FibroAction News Feed

WEGO Health do Interview with FibroAction Founder

Fri, 23 May 2008 12:00:00 +0100

WEGO Health have done a Spotlight interview with FibroAction founder, Lindsey Middlemiss. Click here to read the interview.

WEGO Health is a online resource connecting health activists and empowering them to help others. Health Activists are group leaders and forum moderators, bloggers and book authors, coaches and caregivers; a community of people who care deeply about others, with a passion for sharing knowledge and experience for the greater good.

WEGO Health Activists are devoted to a broad range of conditions and causes, including diabetes, Migraine, Alzheimer's Disease, Diet, Fitness and Fibromyalgia Syndrome (Fibro). One of WEGO Health's first projects has been to make online health information more useful and easily accessible by everyone, by identifying, ranking, rating and organising web pages with just the most useful health content across a wide range of health topics. So far, nearly 30,000 pages have been identified and ranked. FibroAction will be working with WEGO Health to improve their information on Fibro

FibroAction Website Gets Upgraded

Sun, 01 Jun 2008 12:00:00 +0100

The FibroAction website upgrade has finally been implemented! We hope you like the new look site and will benefit from the extra information and tools we have added.

As well as making use of all the information on the site, you can now sign up for FibroAction's free e-newsletter, bringing all the latest news, research and articles straight to your inbox every month.

More sections will be added to the website over time and the Research section, Patient section, Healthcare Professionals section and News will have new content each month. If you prefer getting updates through feeds, then RSS (Really Simple Syndication) feeds are available for all frequently updated content - subscribe to the feeds on the pages you want to stay up-to-date with.

You can help us to continue to improve the website in a number of ways:

Let us know what you think! If there is something that you think is missing from our website, contact us and let us know your suggestion.
Remember that FibroAction wants to encourage awareness raising events and activities. If you are organising an event, contact us and let us know all about it. We may be able to help and can publicise the event in our Awareness section.
Contact us and let us know if you get any local press done on Fibro or if you see anything in the press about Fibro. FibroAction tries to keep an eye on the media coverage, but we can't read every single newspaper in the country! The more media coverage Fibro gets, the more journalists are likely to realise that Fibro is a story that isn't going away, and one that is of interest to a large number of people
If you run a support group, contact us with details and we will help to publicise the group by adding it to our Support Group Directory. If you are a group member, encourage the group leader to contact us.
If you know of a healthcare professional who has a good understanding of, and treats, Fibro, then recommend them for the Health Professionals List.

We hope you enjoy using the website!

Tried and Tested project launches today

Thu, 05 Jun 2008 12:00:00 +0100

The Tried and Tested launch event is today!

If you are in the Reigate, Surrey area today. come along to the event, which starts at 2pm

FibroAtion founder and chair, Lindsey Middlemiss, will be there to give a brief talk and to support this awareness raising event, organised by Caroline Hinkes, a member of the Surrey and Sussex Support group.

The Tried and Tested project aims to get volunteers with Fibro to try out complementary therapies for free so that a guide can be compiled with people’s experiences, enabling other sufferers to make targeted decisions about how they spend their money.

The Tried and Tested project is being launched with an event at 2pm on Thursday 5th June in Reigate. Presentations will be made about the various therapies on offer with the project and ice cool healthy smoothies have kindly been sponsored by Urban kitchen for attendees to try. £5,000 worth of products for Fibromyalgia will be made available for volunteer Fibro sufferers to take home for free and test. Volunteers will then be able to keep many of the products.

Website downtime

Wed, 11 Jun 2008 12:00:00 +0100

Apologies if the website's downtime today has been an issue for you. The servers in the States were recently updated and there may still be some "bugs". Hopefully the issues have now been sorted and we should be back to normal.

Website issues

Sun, 15 Jun 2008 12:00:00 +0100

Apologies if you tried to access the website over the week and found it offline. We've been experiencing further issues with our service provider, and are now changing providers which should hopefully solve the problems.

PolkaDotGals Calendar available to preorder

Mon, 16 Jun 2008 12:00:00 +0100

The PolkaDotGals Calendar for Fibromyalgia Awareness is now available to pre-order from the PolkaDotGals Ltd website.

The PolkaDotGals Campaign for Fibromyalgia Awareness was founded by former model Bianca Embley, a long-term Fibromyalgia Syndrome (Fibro) sufferer. The main focus of the PolkaDotGals Campaign has been the PolkaDotGals Calendar for 2009, which has been shot by renowned London photographer, Luke Varley. The tasteful and artistic part-nude calendar features Fibro sufferers and celebrities such as model Danni Wells, championship hurdler Sara McGreavy, America's Cup sailor David Carr and Coventry City footballers Elliott Ward and Michael Doyle. Amusing and yet informative quotes about Fibromyalgia are featured on each page of the calendar to add to its impact in raising awareness of the condition.

For more information see the National Awareness Events and Activities page.

To pre-order the PolkaDotGals Calendar, go to www.polkadotgals.com.

FibroActions Useful Links Directory updated

Wed, 18 Jun 2008 12:00:00 +0100

The Useful Links Directory on the FibroAction Website has been expanded and now contains more links that may be of use to people with Fibromyalgia Syndrome (Fibro).

The Useful Links Directory has been sorted into categories:

Medical and Medication Information

General Support and Information

Information about conditions that may be related to Fibro

UK Fibro Awareness

UK Support Groups

UK Doctors and Clinics that specialise in Fibro

International organisations relelvant to Fibro

Other organisations relevant to Fibro

International Doctors and Clinics that specialise in Fibro

If you have a suggestion of a link to be included in the Useful Links Directory, then do contact us.

Disclaimer: FibroAction aims to include links to websites that provide relevant and useful information for people living with and interested in Fibromyalgia Syndrome (Fibro). We will not knowingly provide links to sites that contain illegal, offensive or misleading information. Links will be provided based on the above criteria and at the discretion of FibroAction. Although we endeavour to check sites for high quality, accurate and appropriate information, FibroAction does not endorse nor accept any responsibility for the content of other websites. However, any concerns should be raised with the website admin team.

Professional Advisory Board Launch

Fri, 20 Jun 2008 12:00:00 +0100

FibroAction is proud to announce the launch of our Professional Advisory Board.

The Professional Advisory Board (PAB) will advise FibroAction's trustees/directors and it consists of professionals who have an interest in Fibromyalgia Syndrome (Fibro).

The founding members of FibroAction's PAB are:

Professor John E Davies MRCS D.Phys.Med FFSEM, a consultant Rheumatologist and Professor in Sports Medicine, who leads the NHS FMS Clinic at Guys Hospital, London and has been specifically treating Fibromyalgia Syndrome and Myofascial Pain patients for over a decade at his private clinics in London and Bristol.

Daniel Austen BSc, the Clinic Manager for the London and Bristol FM Clinics, headed up by Professor John E Davies. Daniel has a long history of setting up new or cutting edge medical treatments in the UK in both the NHS and Private sectors and he has Fibromyalgia Syndrome himself.

Dr Kim Lawson, BTech (Hons), PhD, of the Biomedical Research Centre, Sheffield Hallam University, is a research pharmacologist with an international reputation in Drug Discovery Research. Dr Lawson has research interests in the identification of novel targets for the development of drugs for the treatment of Fibromyalgia Syndrome.

Dr David Middlemiss, PhD, a Medicinal Chemist by training with 40 years experience in the Pharmaceutical industry. Dr Middlemiss is founder of XaviaPharm, an independent consultancy, which specializes in Medicinal Chemistry, Drug Discovery and strategic analysis. He is also a co-founder and Director of Theradeas Ltd., and Pharmadeas Ltd.

For more information, please see the Professional Advisory Board (PAB) Members section.

Website Move Completed

Sat, 21 Jun 2008 12:00:00 +0100

FibroAction has just completed its move to a new website hosting provider with higher bandwidth, allowing more website traffic, and the capacity to cope with greater user numbers than our previous provider.

We are confident that this will mean the intermittent interruption in service that we have been experiencing should be a thing of the past. Thank you for your patience whilst we resolved these issues.

We would like to thank our internet development team for the work they have done in developing FibroAction’s website and with moving website hosting provider.

Fibro at the EULAR Congress of Rheumatology

Mon, 23 Jun 2008 12:00:00 +0100

The recent EULAR 2008 Annual European COngress of Rheumatology took place from 11th to 14th June in Paris and 93 abstracts discussing Fibromyalgia Syndrome were submitted to the congress.

EULAR (the European League Against Rheumatism) defines rheumatology as "including rheumatic diseases of the connective tissue, locomotor and musculoskeletal systems" and EULAR addresses regional pain syndromes, such as RSD, and widespread pain syndromes, such as Fibromyalgia Syndrome (Fibro), as well as the more usual rheumatological conditions, such as the different forms of arthritis and autoimmune conditions. Last year, EULAR released their evidence based guidelines for the management of Fibromyalgia Syndrome, which were the first such guidelines to be published for Fibro.

According to EULAR, the aim of the annual congress is "to provide the best forum of the highest standards for scientific (both clinical and basic science), educational and social exchange among professionals involved in rheumatology, with links to patient organisations, in order to achieve progress in clinical care of patients with rheumatic diseases."

The congress included scientific sessions organised by EULAR and satellite sessions organised by various companies and there were also a large number of companies and organisations exhibiting at the Congress, including the American National Fibromyalgia Association.

A total of 93 abstracts of scientific papers that discussed Fibro were submitted to the Congress and presented there, demonstrating the good level of interest in and research into the condition.

There were also 6 satellite symposia relating to Fibro, sponsored by various pharmamceutical firms including Lilly, whose drug Cymbalta (duloxetine) was recently approved by the treatment of Fibro by the American FDA (Cymbalta approval article) and Pfizer, whose drug Lyrica (pregabalin) was FDA approved for Fibro last year.

The amount of discussion of Fibro at the Congress reflects the large and increasing amount of interest in the condition internationally, and the volume of research being done into Fibro. This is all goes to show that despite the low level of awareness generally in the UK, great steps are being made in knowledge of the condition.

Software upgrade tonight

Mon, 14 Jul 2008 12:00:00 +0100

The FibroAction website is having a software upgrade tonight, which may cause some interruption to the FibroAction website service.

The work will begin at 11pm BST on Monday July 14th.

FibroAction helps NHS Direct update Fibro topic

Mon, 14 Jul 2008 12:00:00 +0100

FibroAction is delighted to announce that NHS Direct have updated their website information on Fibromyalgia Syndrome (Fibro).

Following input from FibroAction, the editorial team at NHS Direct fully reviewed and updated all sections of the Fibro topic and the updated information was published on July 10th.

The NHS Direct website is the first port of call for many patients, medical professionals and media and the much expanded and improved Fibro topic will help to raise awareness of the realities of the condition.

FibroAction's website, including our entire About Fibro section, was referenced in the updated NHS Direct topic. We are pleased and proud that the information we have produced is considered worthy of reference on such a high profile website as NHS Direct.

Because the NHS Direct website information is used so often, this update could have a great impact on awareness of the condition. Here at FibroAction, we consider this to be an important step forward in our work to raise awareness of Fibro and make accurate, up-to-date information easily accessible.

FibroAction will continue to work with NHS Direct, and other organisations, to make sure that the information about Fibro that is available to patients, medical professionals and media is as good as possible.

To see the improved article, please see the NHS Direct website article on Fibro.

USA FDA seeks warning for anticonvulsants

Mon, 14 Jul 2008 03:00:00 +0100

The American Food and Drug Administration (FDA) announced last week that it will be seeking to get "black-box warnings" on all anti-epileptic drugs, including Neurontin (Gabapentin) and Lyrica (Pregabalin) which are also used for neuropathic pain and Fibromyalgia Syndrome (Fibro).

The warnings, which will appear in a black box on the medication boxes in the USA, will be to alert prescribers and patients about an increased risk of suicidal thoughts and behaviors, or suicidality associated with these medications.

Last year, Lyrica became the first medication to get FDA approval for its use as a treatment for Fibro. Lyrica is often considered to be a more modern alternative to Neurontin, which is sometimes prescribed for Fibro, despite being "off-label" or unapproved.

In January of this year, the FDA issued a warning that Lyrica, Neurontin and other anti-epileptic drugs (anti-convulsants) could cause increase a patient’s risk of suicidal thoughts and behaviors.

The FDA carried out meta-analyses of 199 placebo-controlled trials of the 11 drugs in question in 2005, after one firm indicated that their results showed an increase in the incidence of suicidality. The trials involved 27,863 treated patients and 16,029 given placebo. The FDA's analyses showed that patients taking those medications have about twice the risk of suicidality compared with placebo, although they also showed that the relative risk for suicidality was higher in the patients with epilepsy compared with patients given one of the drugs for psychiatric or other conditions, such as Fibro.

The higher risk of events for the drug-treated patients was observed as early as one week from starting treatment until at least 24 weeks, the FDA said, adding that after 24 weeks, it was not possible to draw conclusions due to the lack of data.

Regulators in the USA are calling for the black-box warning to be added to the labeling for all antiepileptic drugs, even though there was no signs of increased risk of suicidality detected for three of the 11 medications.

Russell Katz, director of the FDA's Division of Neurology Products, is reported to have said that there seemed to be no good reason to ignore "what appears to be a very clear empirical finding of an increase in suicidality, despite no obvious explanation for this finding."

Mr Katz also noted that at least one firm, has come to a different conlusion than the FDA having performed additional analyses of the data for its own drugs. This firm and others will have to submit their own information to the FDA committee for review.

FibroAction would like to remind Fibro patients that stopping any medication suddenly may be dangerous in itself. If you have concerns about taking any medication, please see your doctor before changing anything.

Updated Fibro Info on NHS professionals website

Tue, 15 Jul 2008 12:00:00 +0100

The updated information on Fibromyalgia Syndrome (Fibro) that was recently published on the NHS Direct website is also available on the NHS Clinical Knowledge Summaries website.

Following input from FibroAction, the editorial team at NHS Direct fully reviewed and updated all sections of the Fibro topic and the updated information was published on July 10th. It has since been brought to FibroAction's attention that this updated information is also available on the NHS Clinical Knowledge Summaries (CKS) website

the NHS CKS are a reliable source of evidence-based information and practical 'know how' about common conditions, aimed at healthcare professionals working in primary care, from GPs and Accident & Emergency staff to nurses and pharmacists. CKS is a central resource of the National Library of Health (NLH) which is part of the NHS Institute.

Despite the high numbers of Fibro sufferers, awareness of the condition, and the knowledge and treatments available for it, is very low, even amongst medical professionals. There are a number of common misunderstandings about Fibro, such that there is nothing that can be done for it.

The updating of the NHS CKS information on Fibro, as well as the NHS Direct website, means that healthcare professionals now have better information available on their own NHS information sources.

If, as so often happens, a GP tells a Fibro patient that there is nothing that can be done to help the condition, then those GPs can now be referred to their own CKS service for more up-to-date information.

The information can be printed out as a patient information leaflet and is available from the CKS Library.

Doctors to get yearly appraisals

Wed, 23 Jul 2008 12:00:00 +0100

All doctors in the UK are to undergo more appraisals in the future, according to plans set out by the Chief Medical Officer today.

Chief Medical Officer Sir Liam Donaldson's report 'Medical Revalidation: Principles and Next Steps' outlines how senior doctors will be appointed to assess the competence of GPs and hospital consultants in their area to ensure that patients’ lives are not being put at risk.

The new system will make annual appraisals of all doctors mandatory. These appraisals will cover the full range of performance factors, including prescribing habits, interaction with patients and personal problems such as alcohol or drug misuse. GPs, private practitioners and hospital consultants will also have to have their medical licences reissued every 5 years.

The General Medical Council (GMC), which was founded in 1858 to regulate doctors’ fitness to practise, recommended continuing reviews of doctors’ credentials ten years ago, after a series of scandals over medical incompetence. Calls for further appraisals were renewed after the case of GP Harold Shipman, who murdered up to 250 of his patients.

The GMC said today that it had dealt with 5,168 complaints about doctors last year – 1,300 more than in 2000 – but only about 1 in 3 led to an investigation, and fewer than 5% of complaints to a hearing. A total of 60 doctors were struck off.

Sir Graeme Catto, President of the GMC, described today's report as a “wake-up call” for doctors and local NHS organisations.

Critics of the scheme have said that the new system could lead to doctors having less time to spend with patients because of extra bureaucracy, something that the Department of Health has denied.

However, Claire Rayner, president of the Patients Association, has said that she is delighted by the new plans:

"It's a complicated business, medicine, to say the least, and it is much too easy to say: 'All you have to do is get your qualification, shove up your plates, and get on with the job'."

Dame Carol Black, President of the Academy of Medical Royal Colleges, has also welcomed the new plans, describing revalidation as a “unique opportunity” for all doctors to demonstrate to patients, the public, their employers and peers their competence to provide high-quality medical care.

The new system may give Fibromyalgia Syndrome (Fibro) patients more recourse to demand that their doctors do not refuse to diagnose and treat them, and better response to complaints if a bad experience is had with a doctor. Some doctors still refuse to believe in the validity of the Fibro diagnosis, despite the increasingly large volume of research that demonstrates the condition is very real. Others may diagnose patients and then tell them there nothing they can do, despite there now being many treatment options (both pharmacological and non-pharmacological) known about and available for Fibro patients. The new system may help prevent doctors failing their Fibro patients in this way.

The system is planned to be drawn up and piloted over the next 18 months.

Let Us Know Your Awareness Week Plans

Sat, 26 Jul 2008 12:00:00 +0100

UK Fibro Awareness Week 2008 will be from 7th to 13th September and FibroAction would like to hear if you are involved with an awareness raising event or activity for the week.

A number of events are planned around the UK to celebrate the Awareness Week and FibroAction would like to hear from you if you are organising an event. Email us details at info@fibroaction.org.

Awareness events planned include:

The FollyPogs Dinner & Fun Evening

Jeanne Hambleton, of the blog FMS Global News and FaMily magazine, is organising a dinner & fun evening in aid of Fibro awareness and research. The Folly Pogs Dinner and Fun evening will take place on Friday 12th September, from 6.30pm at the Chichester Park Hotel, West Sussex, UK. The evening will include dinner, cabaret, comedy and charity auction. More more information, see the Folly Pogs Dinner & Fun evening page.

An Open Meeting in West Berkshire

The West Berks ME & Fibro Group is having an Open Meeting at the West Berkshire Community Hospital, Newbury, on Monday 8th September. The meeting will include refreshments, information stands and an opportunity to meet with group members and chat, before a talk on Fibro and how it can be treated by Daniel Austen, Clinic Manager for Prof John E Davies of the private UK FM/ME Clinics and the NHS FM Clinic at Guy's & St. Thomas' Hospital, London. The West Berks ME & Fibro Group will also have an informative display up in the hospital lobby throughout UK Fibro Awareness Week. For more information, see the West Berkshire Open Meeting page.

Other ways in which you could raise awareness:

Organise an event of your own. This can be as easy as announcing, via your local support group or in your local paper, that you would like to meet fellow sufferers for coffee.
Get your local paper and radio to do a piece on UK Fibro Awareness Week. If you need help with how to go about this, contact FibroAction.
Make sure your doctor has up-to-date information about Fibro. Print off information from this website, or ask your doctor to either look at this website, or the NHS Direct or NHS Clinical Knowledge Summaries websites which were recently updated. This would also be a great thing to do with physiotherapists, OTs and complementary therapists of all kinds. If you have a great doctor or other healthcare professional, why not recommend them for FibroAction's Recommended Healthcare Professionals List?
Buy FibroAction merchandise from the Spreadshirt shop and make people aware that yellow and black means Fibro - and what Fibro is. Even better, be very organised and order some early Christmas presents.
Order a copy or copies of the PolkaDotGals Calendar for Fibromyalgia Awareness, available from polkadotgals.com. Another great Christmas present!

Pharmaceutical firms give mixed reports

Sun, 27 Jul 2008 12:00:00 +0100

Some of the world's biggest pharmaceutical firms issued a mix of both positive and negative financial reports this week, with restructuring being a common theme.

Pharmaceutical firm Eli Lilly have announced that their net income for the 2nd quarter of this year soared up 44%, partly driven by the sales of which recently got FDA approval for Fibromyalgia Syndrome (Fibro).

In June, Lilly announced that the US Food and Drug Administration (FDA) has approved their medication Cymbalta for the treatment of Fibromyalgia Syndrome (Fibro). Cymbalta (Duloxetine hydrochloride) is only the second drug to be approved by the US FDA specifically for the treatment of Fibro. It is a selective serotonin and norepinephrine reuptake inhibitor (SSNRI or SNRI) and the first SNRI proven in studies to reduce pain in patients with Fibro.

Fibro is the fourth condition for which the US FDA has approved Cymbalta as a treatment. In addition to Fibro, Cymbalta is approved for the management of diabetic peripheral neuropathic pain and the treatment of major depressive disorder and generalized anxiety disorder, all in adults age 18 years and older.

Lilly announced that sales of Cymbalta alone increased by 26% to $654.4 million in the 2nd quarter of this year. However Lilly’s best-selling drug continues to be the schizophrenia drug Zyprexa (olanzapine).

However Lilly lowered its 2008 earnings guidance on how much its shares will be worth, as a result of costs related to plant closures and job eliminations. Financial analysts were not overly-excited by Lilly's 2nd quarter results as many of them are waiting to see whether a bloodthinning drug Lilly and Daiichi Sankyo are producing will be approved by the US FDA.

Pharmaceutical firm Bristol-Myers Squibb Co. also posted good 2nd quarter results, but announced further job cuts as part of their ongoing restructuring.

This news comes in the same week that pharmaceutical giant Pfizer reported a 26% increase in income for the 2nd quarter of this year, despite many analysts having forecast that the firm faces further challenges, having been hurt by steady declines in U.S. sales and not having any major drug approvals coming up.

In the 1st quarter of this year, Pfizer reported an 18% drop in profits, but the loss of US sales has been more than compensated for in the 2nd quarter with an increase in worldwide sales. Last year, Pfizer's Lyrica (Pregabalin) made Fibro history when it became the first drug approved for the treatment of Fibro.

GlaxoSmithKline (GSK), the world's second largest pharmaceuticals group, announced this week that they would be restructuring the firm, following a fall in profits for the 2nd quarter of this year, compared to both the 1st quarter of this year and the 2nd quarter of last year.

GSK now plans to operate more like a group of small biotech firms and hopes that its new approach will lead to more drugs being developed by the company that go on to earn a modest amount, instead of the group depending on sales of a few "blockbuster" drugs. The company also plans to get more advice from organisations like the National Institute of Clinical Excellence (NICE), which helps to decide which drugs the NHS pays for, in order to make sure that GSK's drugs will be cost-effective and sufficiently unique so that they are made available to more patients.

Dr Jacob Teitelbaum to visit the UK

Wed, 13 Aug 2008 12:00:00 +0100

Renowned Chronic Fatigue Syndrome (CFS) and Fibromyalgia Syndrome (Fibro) expert Dr Jacob Teitelbaum will be visiting the UK next week and will appear on national TV and radio, as well as giving a talk in Glasgow.

Dr Teitelbaum is the author of 'From Fatigued to Fantastic!' a popular book on managing chronic fatigue, and of 'Pain Free: 1-2-3'. He quite frequently speaks on chronic fatigue, Fibro and on the use of supplements to manage these conditions, and has previously appeared on CNN, FOX News and the Oprah and Friends Show with Dr. Oz in the US.

On Thursday 21st August at 1.30pm, Dr Teitelbaum will be speaking at the Pearce Institute in Govan, Glasgow. Anyone is welcome to attend. He will speak about his personal experience of dealing with Fibro and his research into chronic fatigue, with the theme 'Tired All The Time', a phrase doctors commonly hear and abbreviate to TATT.

Dr Teitelbaum also has a busy schedule of media appearances lined up for his visit. An interview with him is scheduled to be on BBC Radio 5 this Saturday evening. He will be then appearing live on ITV's This Morning show on Monday 18th August. On Wednesday 20th August, he will appear on the evening show for STV (Scotland), before being on the late show with Radio Clyde. And then on Thursday 21st August, Dr Teitelbaum will be on Steve Wright In The Afternoon with Richard Allinson on BBC Radio 2.

During his visit, Dr Teitelbaum will also be meeting with a number of UK doctors, researchers and clinic managers, as well as training doctors and nutritionists at complementary health centres such as The Essential Health & Wellbeing Centre in Glasgow and The NutriCentre in London.

No Medications UK Licensed for Fibro

Wed, 13 Aug 2008 12:00:00 +0100

The MHRA, the UK medications licensing agency, has confirmed that there are currently no medications or medical devices currently licensed specifically for use for treating Fibromyalgia Syndrome (Fibro) in the UK.

Some confusion was caused when, after FibroAction's input led to NHS Direct updating their information on Fibro, NHS Direct included a page that gave the impression that a number of medications were already licensed for Fibro in the UK.

NHS Direct removed the medicine guides for corticosteroid medications Methylprednisolone/Lidocaine and Prednisolone from the list after FibroAction pointed out that, according to the EULAR Evidence-based Recommendations for the Management of Fibromyalgia Syndrome, corticosteroids are not recommended for Fibro. Medicine guides for Amitriptyline, Fluoxetine, Ibuprofen and Diazepam were left on the NHS Direct website.

FibroAction has now had a definite response from the Medicines and Healthcare products Regulatory Agency (MHRA), the UK medicine licensing agency, saying that there are no medications or medical devices currently licensed specifically for use for treating Fibro in the UK. We hope that this clears up the confusion and FibroAction continues to work with NHS Direct to ensure that the information they provide is as accurate as possible.

A number of medications are in the pipeline to get approval to be licensed for use in treating Fibro in the UK. FibroAction hopes that we will soon see a number of medications licensed for use in treating Fibro in the UK as this will help to bring recognition to this often neglected condition. However, we would also like to remind patients and healthcare providers that there are a number of medications that can be use in treating Fibro and that patients should not be left to suffer unnecessarily.

Dr Jacob Teitelbaum joins FibroAction advisory body

Sun, 17 Aug 2008 12:00:00 +0100

Dr Teitelbaum is a board certified internist (a medical doctor who specialises in the care of adults) in the USA, and he is Medical Director of the American National Fibromyalgia and Fatigue Centers, Inc.

He is the author of 'From Fatigued to Fantastic!' a bestselling book on managing chronic fatigue, and 'Pain Free: 1-2-3', a step-by-step program to help identify the source of pain and understand how to alleviate it.

Dr Teitelbaum lectures to patient, physician and research groups internationally. He also speaks in the media on chronic fatigue, Fibro and on the use of supplements to manage these conditions, appearing on, among others, CNN, FOX News and the Oprah and Friends Show with Dr. Oz in the US and This Morning on ITV and STV in the UK.

He is the lead author of “gold standard” research on effective treatment for CFS and Fibro, which was published in the Journal of Chronic Fatigue Syndrome, volume 8, number 2 in 2001. In April 2002, he was editorialized in the Journal of the American Academy of Pain Management, where his integrative treatment protocol was recognized as “standard of practice” for chronic pain conditions. His latest study, published in the Journal of Alternative and Complementary Medicine, focused on the effects of a 5-carbon sugar called D-ribose on Fibro patients.

Dr Teitelbaum also knows CFS/Fibro as an insider - he contracted Chronic Fatigue Syndrome when he was in medical school and had to drop out for a year to recover. In the ensuing 25 years, he dedicated his career to finding effective treatment.

For more information on Dr Jacob Teitelbaum, see his website www.endfatigue.com. On this website, you can also sign up for his newsletter, as well as checking out the free short online program which will analyze your symptoms and history using the same assessment criteria that Dr. Teitelbaum uses.

Return to the PAB page

IASP 12th World Congress on Pain

Wed, 20 Aug 2008 12:00:00 +0100

The International Association for the Study of Pain®'s (IASP's) World Congress on Pain is being held in Glasgow this week. FibroAction founder and Chair, Lindsey Middlemiss, attended the first day of the Congress, along with FibroAction Professional Advisory Board (PAB) member Daniel Austen, and Jo Fisher, the development officer for the Surrey & Sussex Support Group.

The IASP World Congress on Pain is a biennial, international and multidisciplinary event that attracts experts in pain from around the world. The 2008 event, being held at the Scottish Exhibition & Conference Centre (SECC) in Glasgow, has around 5,000 delegates, with Fibromyalgia Syndrome (Fibro) being widely acknowledged and well represented.

The highlight of the IASP World Congress on Pain for the Fibro community was a talk on Monday by leading Fibro expert, Daniel Clauw MD, discussing 'Stress and Chronic Pain: Lessons Learned from Fibromyalgia'. Dr Clauw is Professor of Medicine at the University of Michigan, USA, and has authored over 100 papers relating to Fibro, as well as a number of book chapters.

In his 30 minute talk, given to a full room in the 3,000 seat Clyde Auditorium, Daniel Clauw MD discussed Fibro from its causes to its treatments. A full review of Dr Clauw's talk will be published shortly.

As well as Dr Clauw's talk, there were also a workshop and a number of poster presentations being given on Fibro. The topical workshop on Monday was on the subject 'Myalgia: Are Myofascial Trigger Points and Tender Points of Fibromyalgia the same or different phenomena?'.

One of the posters presented on Monday was 'Fibromyalgia: Impaired Top-Down Control during Anticipatory Pain Relief', describing a study by Canadian researchers showing that, although anticipating pain can lead to greater perceived pain levels, the physical pain response in patients with Fibro is extreme, maintained and unaffected by whether patients think that something will hurt or not. The researchers concluded that:

"...[the pain reading in Fibro] cannot be reduced to a psychological epiphenomenon, but rather suggests a true neurological disturbance."

This is more proof that Fibro is a real condition that causes increased levels of pain physically.

Other posters concerning Fibro that were presented on Monday included:

'Plaintiff and Expert Credibility: What Judges Look for in Fibromyalgia Claims'
'Personality traits, anxiety and depression levels among patients suffering from Fibromyalgia'
'Psychoendocrine Stress Response and Pain Perception in Patients with Fibromyalgia Syndrome'

Further poster presentations on Fibro will be made during the week, including one from leading Fibro expert Patrick Wood MD on 'The Analgesic Capacity of Mesolimbic Dopamine D2 Receptors: Indirect Modulation of Thalamocortical Drive'.

The coverage of Fibro at an event of the size and importance of the IASP World Congress on Pain shows how seriously Fibro is beginning to be treated by the international community of doctors and researchers concerned with pain.

Daniel Clauw MD and Patrick Wood MD join FibroAction PAB

Wed, 20 Aug 2008 10:00:00 +0100

FibroAction is delighted to announce that Dr Daniel Clauw MD and Dr Patrick Wood MD have both agreed to join the FibroAction Professional Advisory Board (PAB).

Dr Clauw and Dr Wood are both world class experts on Fibromyalgia Syndrome (Fibro) and their addition to the FibroAction PAB is of huge significance to us.

Dr Clauw is Professor of Medicine at the University of Michigan, USA, and has authored over 100 papers relating to Fibro, as well as a number of book chapters. He spoke this week at the International Association for the Study of Pain®'s (IASP's) World Congress on Pain in Glasgow, where he met with FibroAction founder and chair Lindsey Middlemiss, along withFibroAction Professional Advisory Board (PAB) member Daniel Austen, and Jo Fisher, the development officer for the Surrey & Sussex Support Group.

Dr Wood is a respected authority on the cause and treatment of Fibromyalgia Syndrome who has been twice recognized by the American National Institutes for Health for his innovative research. He is also the originator of the Dopamine Theory of Fibromyalgia and has spearheaded the use of advanced imaging technologies including Positron Emission Tomography and Magnetic Resonance Spectroscopy to investigate fundamental changes within the central nervous system that result in the development of Fibro. He is presenting a poster this week at the International Association for the Study of Pain®'s (IASP's) World Congress on Pain in Glasgow.

FibroAction joins Chronic Pain Policy Coalition

Thu, 28 Aug 2008 12:00:00 +0100

FibroAction is proud to announce that it is now a member of The Chronic Pain Policy Coalition.

Established in 2006, the Chronic Pain Policy Coalition (CPPC) brings toegther professionals, parliamentarians and patients who operate at a policy level in order to develop an improved strategy for the prevention, treatment and management of chronic pain and its associated conditions. The CPPC seeks to improve the lives of the 7.8 million people in the UK who live with chronic pain, which will also bring substantial economic and social benefits for society as a whole.

Part of this is their campaign to make pain the 5th vital sign in the UK. Whilst it is common for health service professionals to measure the temperature, blood pressure, respiratory and pulse rates of their patients on a regular basis and at the earliest opportunity, pain is not measured with the same level of importance or frequency. The CPPC is campaigning for pain to be included as the fifth vital sign to be measured on a regular basis and at the earliest opportunity, using a simple 10 point scale.

Dr Beverly Collett, Chair of the Chronic Pain Policy Coalition, has been quoted as saying:

"If pain were routinely assessed with the same priority as the other vital signs, then a great deal of unnecessary suffering, stress and anxiety could be avoided."

This campaign could be of great importance to people with Fibro, not only because they can go to hospital with no other symptom than pain, but also because their pain can be out of proportion to any injury or illness and this is rarely taken into account.

You can help by "signing" their online petition here.

Raising Awareness in September

Fri, 29 Aug 2008 12:00:00 +0100

September is a busy month for awareness of Fibromyalgia Syndrome (Fibro) and other chronic, invisible and painful conditions.

UK Fibro Awareness Week runs from the 8th to 14th September. Fibro support groups around the UK are planning a variety of activities, including:

On Monday 8th September, the West Berks ME & Fibro Group is having an Open Meeting with refreshments, information stands and an opportunity to meet with group members and chat before a talk on Fibro and how it can be treated by Daniel Austen, Clinic Manager for Prof John E Davies of the private UK FM/ME Clinics and the NHS FM Clinic at Guy's & St. Thomas' Hospital, London. Daniel Austen is a member of FibroAction's Professional Advisory Board and a Fibro sufferer himself. For more information, click here.

On Friday 12th September, Jeanne Hambleton, of the blog FMS Global News and FaMily magazine, is organising a dinner & fun evening in aid of Fibro awareness and research. The Folly Pogs Dinner and Fun evening will take place at the Chichester Park Hotel, West Sussex, UK and the evening will include dinner, cabaret, comedy and charity auction. For more information, click here.

Even if you have nothing yet planned, there's still time to arrange something to celebrate UK Fibro Awareness Week and raise awareness of Fibro.

Hold a coffee morning and have it announced on local radio.
Ask your local paper if they will do an article on Fibromyalgia Syndrome for UK Fibro Awareness Week.
If you have a blog, raise awareness by blogging about Fibro during the Awareness Week.
Write to or go and see your MP and ask them to question your local NHS trust as to why specialist services for Fibro are not provided.
Ask your MP to attend the next meeting of the All Party Parliamentary Group (APPG) on Fibromyalgia and ask them to get your MEP to sign the declaration on Fibro being presented to the European Commission in September.
You could also write to your MEP yourself.
Even just asking your GP to read the updated information on Fibro now available on the NHS Direct, NHS Online and NHS Clinical Knowledge Summaries (formerly PRODIGY) websites will help raise awareness.
Or, for ultimate ease, buy a FibroAction t-shirt, hat or tote bag at the FibroAction Spreadshirt Shop and raise awareness simply by getting about! T-shirt slogans include: 'With Fibro even a butterfly touch could hurt' and 'Fibro sucks!'.

If you are organising anything for UK Fibro Awareness Week, then FibroAction wants to know! Email details of your event or activity to the admin team at info@fibroaction.org.

Invisible Chronic Illness Awareness Week runs from the 8th to 14th September as well. It is an American event but much of the week's activity is carried out online, with international participation not only possible, but encouraged. A number of people will be guest blogging over at the Invisible Illness Blog in the run-up to and during Invisible Chronic Illness Awareness Week. This week, FibroAction founder Lindsey Middlemiss takes a turn, choosing the topic of ‘Do You Think of Yourself as Sick?’ discussing whether, with a chronic invisible illness, you think of yourself as sick, disabled, or just someone who happens to have health issues. Check it out at the Invisible Illness Blog.

September is also National Pain Awareness Month in the USA and whilst this is not a UK event, you can can still do your bit. The Chronic Pain Policy Coalition, of which FibroAction is a member, is leading a movement to develop an improved strategy for the prevention, treatment and management of chronic pain and its associated conditions. Part of this is their campaign to make pain the 5th vital sign in the UK. You can help by "signing" their online petition here - wouldn't you want your pain levels to be amongst the first things checked when you go into hospital?

Fibromyalgia Syndrome declaration for European Parliament

Mon, 01 Sep 2008 12:00:00 +0100

Five Members of the European Parliament (MEPs) will today present a written declaration on Fibromyalgia Syndrome (Fibro) at the European Parliament.

The declaration, which will be presented by Ms Jolanta Dickute (Lithuania), Ms Kathy Sinnott (Ireland), Ms Frieda Brepoels (Belgium), Mr Nicolae Vlad Popa (Romania) and Mr Adamos Adamou (Cyprus), calls on the Commission and the Council to:

Develop a Community strategy on fibromyalgia in order to recognize this condition as a disease.
Help raising awareness of the condition and facilitate access to information for health professionals and patients, by supporting European and National Awareness campaigns.
Encourage Member States to improve access to diagnosis and treatment.
Facilitate research on fibromyalgia through the work programmes of the EU 7th Framework Programme for Research and future research programme.
Facilitate the development of programs for collecting data on fibromyalgia.

Around 380 MEPs need to sign the declaration in order for it to be presented formally to the European Parliament. The declaration will be available for MEPs to sign for 3 months from today (1st September 2008).

Fibro sufferers around Europe are being encouraged to write to their MEPs asking them to sign the declaration. A list of MEPs for your area can be found on the website of the UK Office of the European Parliament.

Fibromyalgia Syndrome on BBC Radio 4 Womans Hour

Tue, 02 Sep 2008 12:00:00 +0100

BBC Radio 4's Woman's Hour programme is planning to do a piece on Fibromyalgia Syndrome (Fibro) on Monday 8th September as part of UK Fibromyalgia Syndrome Awareness Week.

Details have yet to be confirmed, but FibroAction have been assisting the Woman's Hour producers to make contacts and gather information. Woman's Hour producers learnt of Fibro and the need to raise awareness of the condition through contact from Jo Fisher, the Development Officer of the Fibromyalgia Support group for Surrey and Sussex. Eminent rheumatologist Dr Ernest Choy has agreed to talk on the programme, which is likely to also contain input from a patient and someone with helpline experience.

The Woman's Hour programme has been broadcast for over 60 years, first on the BBC's Light Programme (now called Radio 2) and then on Radio 4. In its current format, the first 45 minutes of the programme consists of reports, interviews and debates on health, education, cultural and political topics, with the last 15 minutes being taken up with short-run drama serials. Apparently, research consistently shows that approximately a third of the programme's listeners are male!

A consultant Rheumatologist and Director of Research and Development at King's College Hospital, Dr Choy is also Reader and Director of the Sir Alfred Baring Garrod Clinical Trials Unit in the Academic Department of Rheumatology, King’s College London. Dr Choy is currently chairman of the Arthritis Research Campaign Clinical Trials Collaboration and a member of the European League Against Rheumatism (EULAR) Committee Standing Committee for International Clinical Studies Including Therapeutic Trials. He chairs the EULAR Taskforce on developing recommendations for management and classification criteria for Fibromyalgia Syndrome, which last summer produced a set of evidence based recommendations for the management of Fibromyalgia Syndrome. These were the first guidelines on the treatment of Fibromyalgia Syndrome to be produced in Europe. For more details on these, see here.

If you miss the piece on Fibro on Monday (when it is currently scheduled to be broadcast), then you we be able to listen again via BBC Radio 4's Woman's Hour website here.

FibroAction launches an About Fibro Patient Leaflet

Tue, 09 Sep 2008 12:00:00 +0100

FibroAction has produced a downloadable, printable 'About Fibro' leaflet for patients based on the 'About Fibro' information on this website.

The leaflet covers all the topics in the 'About Fibro' section of the website, including:

What Is Fibro?
What Are the Symptoms of Fibro?
How is Fibro Treated?
Lifestyle Adaptations to help manage Fibro
Medications for Fibro
What Is Fibro?

The leaflet can be viewed online or printed off and it comes in a number of formats, from a full colour high quality PDF or XPS leaflet, to a printer friendly PDF or XPS leaflet with little colour or graphics that is faster to download. It will be updated frequently so as to provide up-to-date and accurate information - keep this in mind if you print it out.

Download the leaflet here.

The publication of the online 'About Fibro' leaflet for patients is part of FibroAction's activities for UK Fibromyalgia Syndrome Awareness Week, 8-14th September 2008.

Temporary Website disruption possible on Saturday evening

Fri, 12 Sep 2008 12:00:00 +0100

The FibroAction website server is having a software upgrade, which may cause some interruption to the FibroAction website service.

Any interruption should take no longer than 5 minutes and may occur between 9pm and 11pm BST on Saturday 13th September 2008.

We apologise for any inconvenience that this may cause.

NHS Choices updates information on Fibromyalgia Syndrome

Sat, 13 Sep 2008 12:00:00 +0100

FibroAction is delighted to announce that, last month, NHS Choices updated their website information on Fibromyalgia Syndrome (Fibro).

This follows the updating of information about Fibro on both the NHS Direct and NHS Clinical Knowledge Summaries websites.

NHS Direct reviewed and updated its online information on Fibro in July, following input from FibroAction. FibroAction's website, including our entire About Fibro section, was referenced in the updated NHS Direct topic.

The updated information was then made available on the NHS Clinical Knowledge Summaries (CKS) website. The NHS CKS are a reliable source of evidence-based information and practical 'know how' about common conditions, aimed at healthcare professionals working in primary care, from GPs and Accident & Emergency staff to nurses and pharmacists. CKS is a central resource of the National Library of Health (NLH) which is part of the NHS Institute, and was formerly known as PRODIGY.

FibroAction continued to work with the editorial team at NHS Direct over the summer to improve the information provided, particularly as regards the medications information. Although the wording of the Medicine Guides section is still rather confusing, as it gives the impression that medications are licensed specifically for Fibro - rather than for symptoms people with Fibro might experience - detailed information is now provided on a large number of medications that could be recommended for Fibro.

The updating of the NHS Choices information on Fibro is another important step forward in raising awareness of Fibro, by making the information about Fibro, that is supplied to both patients and healthcare professionals, more accurate and up-to-date.

If, as so often happens, a GP tells a Fibro patient that there is nothing that can be done to help the condition, then those GPs can now be referred to the NHS's own websites for more up-to-date information.

NHS Choices is the main NHS online information source at www.nhs.uk. It draws together the knowledge and expertise of the National Library for Health, NHS Direct, the Information Centre for Health and Social Care, the Healthcare Commission and many other organisations.

To see the improved information, please seethe NHS Choices website.

FibroAction Becomes a Registered Charity

Mon, 22 Sep 2008 12:00:00 +0100

FibroAction is pleased to announce that it is now registered as a charity with the Charity Commission for England and Wales.

FibroAction (registered charity number 1125957), is a national charity registered in England and Wales, but also working in Northern Ireland and Scotland. As an Incorporated Charity, FibroAction is also registered as a charitable company with Company House. The dual status of Incorporated Charity will enable FibroAction to carry out far more activities without contravening Charity Commission guidelines.

FibroAction has the following Objects or aims:

To promote and protect the physical and mental health of sufferers of Fibromyalgia through the provision of financial assistance, support, education and practical advice.
To advance the education of the general public in all areas relating to Fibromyalgia Syndrome, where the general public includes - sufferers of Fibromyalgia Syndrome; their friends, family and carers; medical and healthcare professionals and the public at large.

FibroAction founder and chair, Lindsey Middlemiss, said:

"I am delighted that the registration of FibroAction as a national charity has been possible so quickly after our incorporation as a charitable company.

We hope that the registration of FibroAction as a national charity will enable us to get even more done to raise awareness of Fibro, educate people about the condition and support sufferers.

In the six months since FibroAction was started, a lot has already been achieved, from the setting up of our website to the updating of information about Fibro on NHS websites. The coming year should be an exciting time for Fibro awareness in the UK and we look forward to making a real difference to the millions of people with Fibro in the UK."

The Charity Commission for England and Wales is established by law as the regulator and registrar of charities in England and Wales. Whatever their size or purpose, an essential requirement of all charities is that they operate for the public benefit and independently of government or commercial interests. The Charity Commission's job is to ensure this happens.

Patients with long term conditions to get free prescriptions in future

Fri, 26 Sep 2008 12:00:00 +0100

Patients with long-term conditions will get free prescriptions in the future under plans announced by the Prime Minister.

Gordon Brown told the Labour Party conference that prescription charges for cancer patients will be scrapped from next year, with other conditions to follow afterwards.

Prescription charges were scraped in Wales last year and are in the process of being phased out in Scotland. A few medical conditions, such as epilepsy and some forms of diabetes already get free prescriptions, with exemptions also available for children, pensioners and people on certain benefits.

The cost of the measure is expected to be paid for by making savings in the overall drugs budget. Savings are expected to be made by more bulk-buying of drugs and increased use of cheaper generic versions rather than branded ones.

Each prescription item in England currently costs £7.10 and prescription charges raise over £400 million for the NHS, even though the range of exemptions already in place mean that only 12& os precsriptions are currently paid for.

Mr Brown said that:

"Because we know that almost every British family has been touched by cancer, [Health Secretary] Alan Johnson and I know we must do more to relieve the financial worry that so often goes alongside the heartache, so our plan is next year to abolish all prescription charges for everyone with cancer.

And this is not the limit of our commitment to a fair NHS.

In the long-term, as the NHS generates cash savings in its drugs budget, we will plough them back into abolishing charges for all patients with long-term conditions."

It is to be hoped that the scrapping of prescription charges will not make it more difficult for patients with long-term conditions to obtain expensive medications, especially branded versions which can sometimes be better tolerated or more effective. The scrapping of the prescription charge in Wales has already led to some GPs being less willing to prescribe drugs.

In the meantime, patients who pay for more than 3 prescription items in 3 months, or 14 items in 12 months can save money by obtaining a pre-payment prescription certificate (PPC). A 3-month PPC will cost you £27.85 and a 12-month PPC £102.50. For more information or to order a PPC, see the Prescription Pricing Authority website here.

GPs under pressure to not use branded medications

Fri, 26 Sep 2008 01:00:00 +0100

A recent poll of GPs has shown that they feel under too much pressure to use cheaper drugs as part of a NHS cost-cutting drive.

The poll of 401 GPs by Pulse magazine found that two thirds felt under pressure and a third said this had started interfering with care.

The NHS drugs bill doubled in the past decade to over £8bn a year and the increased use of generic medications is part of a NHS plan to make savings in the overall drugs budget. Nearly all NHS trusts in England have set up schemes to get GPs to use generic versions of drugs which are cheaper than branded alternatives.

But the government said doctors were free to use their clinical judgement, with a Department of Health spokesman adding that:

"Cost-effective prescribing releases resources for more patients to receive treatment."

However, we expect GPs to exercise their clinical judgment to ensure that their patients are prescribed the most suitable product available.

There is nothing to prevent branded prescribing if a doctor considers it in the patient's best interests to receive a specific product."

Dr Richard Vautrey, of the British Medical Association, said GPs felt caught between the "devil and the deep blue sea" over the issue.

Branded medications include new medications that are still under patent. Branded versions of medications can sometimes be better tolerated or more effective than generic versions.

Savings in the overall NHS drugs budget are where the money will come from to fund a scheme to enable first cancer patients and then patients with all long-term conditions to receieve free prescriptions. However, if this means that certain drugs become less available, it may be more problematic for patients with long-term conditions in the future.

Patricia Fennell joins FibroAction Professional Advisory Board

Fri, 26 Sep 2008 01:00:00 +0100

FibroAction is delighted to announce that Patricia Fennell MSW LCSW-R has agreed to join the FibroAction Professional Advisory Board (PAB).

Patricia Fennell is an innovator in the field of the psychology of chronic illnesses, most notably Chronic Fatigue Syndrome and Fibromyalgia Syndrome (Fibro), as well as multiple sclerosis, cancer, trauma and other conditions. She created the internationally recognized Fennell Four-Phase Treatment (FFPT)™ approach for understanding and treating chronic medical and mental health conditions, which has been translated into several languages and is used by clinicians, researchers, and patients worldwide.

She is the author of several scholarly and popular books and articles, including The Chronic Illness Workbook, Managing Chronic Illness Using the Four-Phase Treatment Approach, and Handbook of Chronic Fatigue Syndrome.

Ms Fennell was invited to serve as a scientific advisor to the U.S. Secretary of Health and was asked to participate as a peer reviewer for the American Pain Society. She was also appointed to serve on an allied health care advisory committee for the U.S. Centers for Disease Control and Prevention (CDC). In addition, the instrument she developed for assessment of patients with chronic syndromes, the Fennell Phase Inventory (FPI)™, is used in a variety of medical research projects.

Ms Fennell has received numerous professional and community honours and serves on the boards of several other medical and professional organizations, including the Editorial Board of the Journal of Chronic Fatigue Syndrome, the Board of Directors of the International Association for Chronic Fatigue Syndrome and ME, the Medical Advisory Board of the US National Fibromyalgia Association, and the Medical Advisory Panel for the Fibromyalgia Support Group for Surrey and Sussex.

Ms Fennell has an active clinical practice and regularly supervises other clinicians.

For more information, see Ms Fennell's website here.

US Expert Andrew Holman giving UK Lecture this Christmas

Thu, 16 Oct 2008 12:00:00 +0100

FibroAction is delighted to announce that the American rheumatologist and Fibromyalgia Syndrome expert Andrew J. Holman MD will be giving a lecture on Fibromyalgia Syndrome on Monday 22nd December, from 7pm to 8.30pm, at St. Thomas' Hospital, London.

The lecture title is: 'Fibromyalgia in 2009: What It Is. What It Isn't. And What To Do About It.'.

Dr Holman has kindly agreed to give the lecture during a short visit to the UK. The lecture is being hosted by Prof John E. Davies, who leads the Fibromyalgia Syndrome clinic at Guy's Hospital. This Christmas lecture presents a rare opportunity to hear and ask questions of an expert who is leading the way into new avenues of knowledge and treatment regarding Fibromyalgia Syndrome.

Dr Holman holds three concurrent positions as Chief Scientific Officer at Inmedix, LLC; President and Clinical Rheumatologist at Pacific Rheumatology Associates and Pacific Rheumatology Research, Inc.; and Associate Clinical Professor of Medicine at the University of Washington. He has participated in numerous pharmacologic and nonpharmacologic trials studying the role of the autonomic nervous system in Fibromyalgia Syndrome and other conditions, and was instrumental in the initial discovery and further development of treatment of Fibromyalgia Syndrome using dopamine agonists. After 15 years of clinical practice focusing on Fibromyalgia Syndrome and Rheumatoid Arthritis, Dr Holman currently maintains a research practice to develop new diagnostic and treatment modalities. Recent research has included evaluating a new type of pain related to intermittent, positional cervical spinal cord compression commonly found among patients with Fibromyalgia Syndrome.

The lecture is open is open to all, but is designed to be useful for healthcare professionals, including physicians, medical students, nurses and physiotherapists. Healthcare professionals who attend will get 1.5 CPD points*. If patients know of doctors with an interest in Fibromyalgia Syndrome, please make sure that they know about this event.

Discounted rates are available for medical students, nurses, physiotherapists and other non-physician healthcare professionals, with further discounts for patients and patient group representatives.

St. Thomas' Hospital is conveniently located in central London, next to Westminster Bridge and very close to Waterloo Station. Why not combine the lecture with a trip to London for Christmas shopping and to see the lights? Tickets are limited, so make sure you register early to avoid disappointment.

This lecture is being organised by FibroAction in conjunction with Prof Davies and the Fibromyalgia Syndrome clinic at Guy's Hospital.

Further details and the application form are available on the FibroAction website here.

*accreditation applied for from the Royal College of Physicians.

Severe blow for millions of Fibro sufferers as European Medicines Agency rejects first drug approval

Mon, 27 Oct 2008 12:00:00 +0000

The millions of Fibromyalgia Syndrome sufferers across Europe have this week received a severe knock-back with the announcement that that the Committee for Medicinal Products for Human Use (CHMP) at the European Medicines Agency (EMEA) has rejected the application of the first medicine, Duloxetine hydrochloride, trying to get approval as a treatment for Fibromyalgia Syndrome (Fibro) in the EU.

Earlier this year Duloxetine was the second medicine to get approval by the Food and Drug Administration (FDA) in the USA for the treatment of Fibro. Pfizer’s Lyrica (Pregabalin) was the first drug to get FDA approval in the USA for the treatment of Fibro in 2007.

Duloxetine has been authorised by the EMEA since December 2004 and is used for the treatment of adults with episodes of major depression, pain due to diabetic peripheral neuropathy, generalised anxiety disorder and stress urinary incontinence.

Pharmaceutical companies Eli Lilly and Boehringer Ingelheim (who would market the drug as Cymbalta and Xeristar respectively) applied for a change to the marketing authorisation so that Duloxetine could be officially indicated as a treatment for Fibromyalgia Syndrome and marketed for this purpose.

The CHMP refused this change, citing as reasons that they were concerned that the effectiveness of Cymbalta/Xeristar (Duloxetine) in treating Fibro had not been shown sufficiently, and that at that point in time, they were of the opinion that the benefits of Cymbalta/Xeristar (Duloxetine) in the treatment of Fibro did not outweigh its risks. The CHMP stated that their concern about the lack of effectiveness of the drug was because the “modest effects” could be due to the medicine’s effect of improving the patients’ mood. However a number of trials of Duloxetine as a treatment for Fibro have concluded that the drug’s effect on Fibro symptoms is independent of its effect on depression (Russell et al, 2008; Arnold et al, 2005; etc). The conclusion of multiple trials was that the drug was safe and efficacious in reducing symptoms of Fibro.

The European Network of Fibromyalgia Associations issued a press release yesterday saying that “it is suspected that the misperception, even among some medical professionals, in Europe that [Fibro] is not a real medical condition must have contributed to the decision”.

Despite an increasing body of evidence that Fibro is a real, physical condition that is not psychosomatic in nature, but is related to Central Nervous System (CNS) dysfunction, there are still medical professionals who refuse to admit the evidence and say that Fibro is a not a real condition.

Fibro is a debilitating, chronic condition whose main symptoms are widespread chronic pain, hypersensitivity to pain and chronic fatigue. Despite the high numbers of sufferers (between 1.2 and 2.7 million people in the UK alone), awareness of the condition, and the knowledge and treatments available for it, is very low, even amongst medical professionals, and many patients are left to suffer alone.

The EU marketing approval for Duloxetine and future drugs to apply is needed because, without it, pharmaceutical companies are unable to promote their products as treatments for Fibro. This product promotion has been seen in the USA to significantly raise awareness of the condition, and of the fact that there are treatments available for it, something that is desperately needed.

“FibroAction are disappointed to learn of the refusal by the CHMP to allow the clinical indications of Duloxetine to be extended to include Fibromyalgia Syndrome” said Lindsey Middlemiss, founder and chair of FibroAction. “We hope that outdated views of Fibromyalgia Syndrome were not a factor in this decision and that the evidence was considered without an unfair bias. The millions of people with Fibromyalgia Syndrome across Europe desperately need the help that a properly approved drug would bring and we hope that the CHMP will shortly be indicating a positive opinion about other treatments for the condition.”

The negative response from the CHMP is likely to perpetuate the myth that because no drugs have marketing approval in the EU for Fibromyalgia Syndrome, there are no treatments available for the condition. Because Duloxetine already has EMEA authorisation, it is available on prescription if a doctor considers that it is an appropriate treatment. This is also true of many other treatments for Fibro, some of which are already widely used.

References:

Russell, IJ, et al. Efficacy and Safety of Duloxetine for Treatment of Fibromyalgia in Patients With or Without Major Depressive Disorder: Results From A Six-Month, Randomized, Double-Blind, Placebo-Controlled, Fixed-Dose Trial, Pain. 2008.

Arnold, L, et al. A Randomized, Double-Blind, Placebo Controlled Trial of Duloxetine in the Treatment of Women with Fibromyalgia With or Without Major Depressive Disorder. Pain. 2005; 119 (1-3): 5-15

Arnold, L, et al. A Double-Blind, Multicenter Trial Comparing Duloxetine with Placebo in the Treatment of Fibromyalgia Patients With or Without Major Depressive Disorder. Arthritis Rheum 2004; 50(9):2974-84.

Andrew Holman Lecture to be held at Guys Hospital

Thu, 30 Oct 2008 12:00:00 +0000

The lecture by Andrew Holman MD will now be held at Guy's Hospital, London instead of St. Thomas' Hospital, London. This alteration has been made at the request of the Fibromyalgia Syndrome clinic at Guy's Hospital. Guy's Hospital and St. Thomas' Hospital are part of the same NHS Trust and are located near each other in south-east London.

US rheumatologist and Fibromyalgia Syndrome expert Andrew J. Holman MD will be giving a lecture on Fibromyalgia Syndrome on Monday 22nd December, as part of a short visit to the UK. The lecture will be hosted by Prof John E. Davies, who leads the Fibromyalgia Syndrome clinic at Guy's Hospital, and it is being organised by FibroAction in conjunction with Prof Davies.

This Christmas lecture presents a rare opportunity to hear and ask questions of an expert who is leading the way into new avenues of knowledge and treatment regarding Fibromyalgia Syndrome.

For more information and to register, see the FibroAction Events page.

ENFA Petition Needs Your Support

Thu, 30 Oct 2008 12:00:00 +0000

ENFA (the European Network of Fibromyalgia Associations) and the European Federation of IASP Chapters have joined together to produce a petition calling for a European Union in which the rights of the 14 million people affected by Fibromyalgia Syndrome are recognized.

ENFA is hoping to reach their goal of 10,000 signatures by Friday 14th November 2008. If they reach this goal, the petition will be able to be used as leverage to get the remaining signatures needed on the European Parliament Written Declaration about Fibromyalgia Syndrome.

If you haven't yet put your name to the petition, please do so on the ENFA website here.

Patient UK updates their Fibromyalgia Syndrome information

Mon, 03 Nov 2008 12:00:00 +0000

FibroAction is pleased to announce that, following our input, Patient UK has updated their online information on Fibromyalgia Syndrome (Fibro).

Patient UK prides itself on providing information that is "The same health information as provided by GPs to patients during consultations" and it is a widely used resource for information on health conditions, used by both patients and their GPs.

FibroAction has been working with Patient UK over the last couple of months after we became aware that the information on Fibro they provided needed updating. A full review and update has now taken place and the information supplied is much improved, with the treatment section drawing heavily from the 'EULAR evidence-based recommendations for the management of fibromyalgia syndrome'.

FibroAction founder Lindsey Middlemiss said today:

"I am delighted that Patient UK has reviewed and updated their information on Fibro. Research into Fibro has discovered so much over the last few years and information sources need to be updated regularly to keep up with the pace of the knowledge acquired.

Patient UK's information is now far more accurate, and better reflects current knowledge of both Fibro and the treatments available for it."

The Patient UK update following FibroAction's input is the latest in a series on information updates that FibroAction has contributed to. During the summer, NHS Direct, the NHS Clinical Knowledge Summaries (formerly PRODIGY), NHS Choices and the BBC were among the organisations that updated their online information on Fibro following FibroAction's input. FibroAction aims to make up-to-date and accurate information about Fibro easily accessible for both patients and doctors and encouraging the updating of other online information sources is a key part of this.

The Patient UK update means that it is even more unlikely that, when a GP goes to look up information on Fibro to give to their patients, they will find inaccurate or out-of-date information.

Patient UK started as a directory of UK websites which provided information of health, disease and related issues. In December 2002, Patient UK was re-launched as a joint venture between PiP (Patient Information Publications) and EMIS (Egton Medical Information Systems), with considerably more content being added. The core team behind Patient UK are GPs, with other doctors and pjarmacists contributing to content.

The Patient UK information on Fibro is available here.

FibroAction teams up with the Charities Aid Foundation to enable online donations

Mon, 03 Nov 2008 12:00:00 +0000

You can now easily support FibroAction by making a secure online donation through the Charities Aid Foundation (CAF).

FibroAction is run entirely by volunteers and costs are kept down as much as possible, but funding restrictions still limit how much can be acheived.

"There is so much to be done to help the millions of Fibro sufferers in the UK" says FibroAction founder Lindsey Middlemiss, "and although I'm delighted with how much progress we have made over the last 6 months, we could get so much more done if we only had the time and funds.".

FibroAction has been running since April 2008 and acheived registered charity status in September 2008.

Despite only having been running for 6 months with very limited funding options because of the time needed to acheieve registered charity status, FibroAction has been managing to make a difference already.

Highlights of FibroAction's first 6 months include:

NHS Direct updating its online information on Fibro in July following FibroAction's input. NHS Choices and the NHS Clinical Knowledge Summaries (formerly PRODIGY) subsequently also updated their information.
The formation of a Professional Advisory Board (PAB), which now numbers eight, including Prof John Davies of the NHS Fibro Clinic at Guy's Hospital, London and renowned American experts such as Patrick Wood MD and Daniel Clauw MD.
The IASP World Congress on Pain in Glasgow, which FibroAction founder Lindsey Middlemiss attended. Daniel Clauw MD gave a talk on Fibro to around 2,500 delegates.
Producing our first 'About Fibro' leaflet for patients. The downloadable printable format of the leaflet saved FibroAction considerable funds and means that it can be easily updated without incurring much cost at all.
Acheiving registered charity status despite current Charity Commission restrictions.
The announcement that US Fibro expert Andrew Holman MD will be giving a Christmas lecture in the UK. The lecture, organised by FibroAction in association with Prof Davies of the Guy's Hospital Fibro Clinic will be held at Guy's Hospital, London on December 22nd and CPD approval is being sought from the Royal College of Physicians for this event. For more information, see the events page.
Patient UK updating their information on Fibro following FibroAction's input.

To help FibroAction continue to work to raise awareness of Fibro in the UK, perhaps you could make a small donation via CAF - click here if you can help us in this way.

For other ways in which you can support FibroAction's work, see the Support FibroAction page.

If you are interested in volunteering for FibroAction, please email us at info@fibroaction.org.

Why donate through CAF?

It’s fast, secure, and you can make a donation straight from your credit or debit card. You can even increase the value of your gift by up to 28% with Gift Aid – no strings attached.

CAF (Charities Aid Foundation) is a registered charity itself. It makes no profits and it saves charities like FibroAction money by reclaiming Gift Aid on our behalf. This means that not only can tax that you paid on the amount you donate be added to your donation through GiftAid, but you know that this money is not being wasted in administration costs.

If you’re a higher rate tax payer, you can print a receipt to use in your tax return, and claim back the difference between basic and higher rate tax in personal tax relief.

You can make your gift anonymously, dedicate it to a loved one with Fibro or even request that it be used for a specific ongoing or planned FibroAction project.

Penalties Scrapped for NHS Top Up Fees

Tue, 04 Nov 2008 11:00:00 +0000

Patients who pay privately for extra medicines will no longer have their right to NHS care taken away, Health Secretary Alan Johnson announced today.

The Department of Health said it was also looking to ensure more drugs were available on the NHS.

Current rules have meant that if patients choose to pay for treatment that is not freely available, they should be excluded from the NHS. However, some NHS trusts have chosen to ignore this advice and NHS trusts have also made different decisions about which treatments are available on the NHS, leading to a postcode lottery for some patients.

In June, the Secretary of State asked Professor Mike Richards CBE, the so-called "cancer tsar", to lead a team to carry out a review examining if, when and in what circumstances patients should be able to purchase additional drugs that are not funded by the NHS.

Professor Richards said in his report that:

"At the heart of the issue is the tension that exists between the principles of equity –that every person should have access to health services based on their need and not on their ability to pay – and personal autonomy – that people should be free to spend their money as they choose. This tension has existed since the NHS was founded 60 years ago, and the issue of unfunded drugs is simply its latest iteration."

The Government set Prof Richards what he called "a deliberately challenging timescale for the Review" and after a 4 month review he has produced a 75-page report, including 14 recommendations for the Government.

Ministers accepted all 14 of Professor Richards' recommendations and the government's proposals are being put out to consultation until the end of January.

FibroAction founder and chair Lindsey Middlemiss welcomed the announcement and was today quoted on independent radio news across the UK saying that patients should not be penalised if they choose to pay for additional healthcare.

Many other national charities and patient groups also welcomed the announcement, but critics said that it could mean a two-tier NHS.

The announcement today means that top-ups will be allowed, but only under strictly regulated conditions if the proposals are agreed to. The package of measures has been designed to ensure that all costs associated with additional top-up treatments - from treating side effects to carrying out extra tests - are paid for by the patient.

The recommendations set out in Prof Richards are as follows:

Recommendation 1: The measures the government is already taking to improve the timeliness of the NICE decision making process are extremely welcome and should be strongly supported. The Department of Health and NICE should publish an update on the timelines for delivering these important commitments.

Recommendation 2: The Department of Health should urgently consider how PCTs can be encouraged to work together to make proactive commissioning decisions. Consideration should be given to whether collaborative processes already developed, such as in the North East for cancer drugs, could be used as a model.

Recommendation 3: The commitment made in the draft NHS Constitution to ensure transparency in PCT decision making, and the resulting work being undertaken by the Department of Health to support PCTs in delivering this, is extremely welcome. The government should set out as soon as possible more detailed plans for how it will achieve the commitment in the NHS Constitution, including the timescale for this work.

Recommendation 4: In developing collaborative arrangements for decision making, the government should also consider how PCTs can be better supported to make decisions on funding off-label drugs, whether as a matter of policy or on an exceptions basis.

Recommendation 5: The Department of Health should work:

...with NICE to assess urgently what affordable measures could be taken to make available drugs used near the end of life that do not meet the cost-effectiveness criteria currently applied to all drugs; and
...with the pharmaceutical industry in the context of the current Pharmaceutical Price Regulation Scheme (PPRS) negotiations to promote more flexible approaches to the pricing and availability of new drugs. This will require partnership working with the pharmaceutical industry and greater flexibility in approach from all parties.

Recommendation 6: The Department of Health should urgently undertake further work to investigate the extent and causes of international variations in drug usage.

Recommendation 7: The Department of Health should clarify the policy on how the NHS should handle situations where a patient wishes to purchase additional treatment. The objective should be to ensure consistency in practice across the NHS.

Recommendation 8: The Department of Health should make clear that no patient should lose their entitlement to NHS care they would have otherwise received, simply because they opt to purchase additional treatment for their condition.

Recommendation 9: The government should make clear that:

...clinicians should exhaust all reasonable avenues for securing NHS funding before a patient considers whether to purchase additional drugs;
...patients should be able to receive additional private drugs as long as these are delivered separately from the NHS elements of their care; and
...providers should establish clear clinical governance arrangements to ensure that patients who do elect to purchase additional private treatment receive good continuity of care.

Recommendation 10: Strategic Health Authorities, working where appropriate through cancer networks, should ensure that local policies are developed to ensure that any revised guidance issued by the government is implemented properly. This might include using a designated hospital with private facilities for all patients wishing to purchase additional drugs, making use of homecare provision or designating an area of an NHS hospital for the delivery of privately funded treatments.

Recommendation 11: The Department of Health should take a lead on commissioning a national audit of demand for unfunded drugs and on the outcome of treatments, working closely with professional organisations and NHS managers.

Recommendation 12:

...Doctors who are likely to have conversations with patients about treatments that are not routinely funded on the NHS should ensure that they have the necessary knowledge and skills to communicate complex information effectively and in a balanced way. This will help patients to make informed assessments about the balance of risk, cost and benefit involved in any potential treatment.
...The Department of Health should commission a training programme for clinicians to enhance the quality of discussion about these difficult issues.
...Relevant Royal Colleges should consider how assessment of communication skills could best be incorporated into recertification processes.

Recommendation 13: The Department of Health should consider how patients could best be given access to balanced written information on the benefits, toxicities and, where appropriate, costs of novel treatments, especially those given to patients near the end of life.

Recommendation 14: In responding to this Review, the government should confirm how situations where patients wish to purchase additional non-drug interventions should be handled.

The full report is available on the BBC website here.

Fibromyalgia Syndrome related E Petition

Sun, 16 Nov 2008 12:00:00 +0000

An e-petition on the Number10.gov.uk website, the offical site of the Prime Minister's Office, needs your support.

The petition, which was started by Fibromyalgia Syndrome sufferer Lisa Manzie says:

We the undersigned petition the Prime Minister to Ease the pressure on fibromyalgia sufferers and the benefits system including medical assistance.

Lisa has asked that we publicise the e-petition as it needs to at least get 200 signatures if it is to stand a chance of getting a reply from Government.

The deadline to "sign" the petition by is 10 December 2008.

You can "sign" the petition if you are a British citizen or resident.

Click here to access the e-petition.

Government and Drugs industry cut deal

Thu, 20 Nov 2008 12:00:00 +0000

The Government and the pharmaceutical industry have cut a deal to reduce the cost to the NHS of new drugs, it was announced yesterday.

The Department of Health said the the deal "means that more patients will benefit from a wider range of innovative drug treatments at a fair price to the NHS".

A flexible pricing scheme has been agreed aiming to ensure that medicines fairly reflect their value to patients, branded drugs will see their price cut, and industry innovations will be encouraged and rewarded.

This should mean that patients will have faster access to new medicines that are clinically and cost effective.

In the announcement, the Department of Health said that:

"[This] agreement with the pharmaceutical industry meets commitments set out both in Lord Darzi's review of the NHS earlier this year and the National Cancer Director's review of access to medicines. It also reflects the Office of Fair Trading's recommendation that value should be better reflected through the Pharmaceutical Price Regulation Scheme (PPRS)."

The headline agreements with industry include:

A cut in the cost of drugs sold to the NHS: a 3.9 per cent price cut will be introduced starting in February 2009, with a further price cut of 1.9 per cent being introduced in January 2010.

Subject to discussion with affected parties, the Department of Health will also introduce generic substitution from January 2010. There would be further price adjustments on January of each year aimed as the proportion of savings from generic substitution varies with time.

Action to support innovation so patients have faster access to new medicines that are clinically and cost-effective.

A new non-contractual voluntary scheme providing stability and predictability in Pharmaceutical Pricing for the next 5 years.

New and more flexible pricing arrangements that will enable drug companies to supply drugs to the NHS at lower initial prices, with the option of higher prices if value is proven at a later date.

The more systematic use of patient access schemes by drug companies to allow access to medicines which have not initially been assessed as cost or clinically effective by NICE.

Secretary of State for Health Alan Johnson said:

"A more flexible approach to pricing is in everyone's interest. It gets clinically and cost effective drugs to more patients - providing cheaper options where clinically appropriate - delivers value for money for the NHS and the tax payer, and creates a better market for the pharmaceutical industry while supporting research and innovation.

Patient access schemes together with flexible pricing of pharmaceuticals will also enable the NHS to offer more patients a wider range of more expensive drugs as recommended by the National Cancer Director Mike Richards in his recent Report on improving access to medicines for NHS Patients."

Send e Cards this Christmas

Wed, 26 Nov 2008 12:00:00 +0000

Save money, save paper and help support FibroAction by sending e-cards for Christmas. FibroAction are one of the charities that can benefit from EveryClick's 'Christmas? Considerate Done' campaign.

Christmas cards generate up to 20,000 tonnes of waste each year (based on data from Defra). Giving through EveryClick means you can send your contacts a menaingful greeting without filling up their recycling bins.

On average, charity Christmas cards give just 10% of their cost to charity (based on data from the Charity Advisories Trust). With EveryClick, 121%* of the amount you donate will get to the charity you choose. This Christmas it really is possible to spend less and give more.

The minimum donation is only £5 and for that you can send a Christmas card to up to 100 recipients.

To take advantage of this scheme, go to EveryClick's Christmas page here.

Help make Christmas 2008 be about spending less and giving more.

Help 2 million plus people in the UK affected by Fibromyalgia Syndrome benefit from your Christmas Cards by selecting FibroAction as the charity recipient of your donation.

* Using Gift Aid means that for every pound given, your charity will receive an extra 28p from HM Revenue & Customs, helping each donation go further at no cost to the donor. For further information please see Everyclick's Terms and conditions.

Merry Christmas

Wed, 24 Dec 2008 12:00:00 +0000

Merry Christmas to all of you from all of us at FibroAction!

A holiday message from FibroAction founder Lindsey Middlemiss

2008 has been an amazing year for FibroAction and we're really excited about how 2009 is going to turn out. This time last year, FibroAction wasn’t even in existence and, in the first nine months, we have achieved more than we thought would be possible in such a short space of time.

We have loads of plans already set in place for 2009 and the new year should see us back refreshed and renewed.

Monday was an amazing night for us as Andrew Holman MD gave a lecture at Guy's Hospital, London that we had organised. Despite the inevitable final minor issues, the lecture went well and everyone I spoke to really appreciated the opportunity to hear from such an expert in Fibromyalgia Syndrome. If you attended on Monday and would like the extra information that was discussed, it will be available in the new year. As I'm sure you understand, everyone who helped out on Monday is still recovering!

The website is undergoing an overhaul and I can't wait till after Christmas to get back to work on improving our content and making the website easier to navigate.

We also have a couple of exciting new projects to unveil in the new year, some to help research and some to help get all of you more involved with the work we do at FibroAction. Watch this space!

Thank you for your support this year – I hope you will continue to support us as we move forward in 2009.

Happy holidays!

~ Lindsey

FDA Approval for Savella

Fri, 16 Jan 2009 12:00:00 +0000

Forest Laboratories, Inc. and Cypress Bioscience, Inc. have announced that Savella^TM (milnacipran hydrochloride), a selective serotonin and norepinephrine dual reuptake inhibitor, has been approved by the U.S. Food and Drug Administration (FDA) for the management of Fibromyalgia Syndrome (Fibro).

This is the third drug to get FDA approval for Fibro, after Lyrica (Pregabalin) and Cymbalta (Duloxetine).

Forest Laboratories is a US-based pharmaceutical company with a long track record of building partnerships and developing and marketing products that make a positive difference in people’s lives. Cypress Bioscience, Inc. is a US-based pharmaceutical company that provides therapeutics and personalized medicine services, facilitating improved and individualized patient care. They aim to address the evolving needs of specialist physicians and their patients by identifying unmet medical needs in the areas of pain, rheumatology, and physical medicine and rehabilitation, including challenging disorders such as Fibro and rheumatoid arthritis. Forest Laboratories, Inc. and Cypress Bioscience, Inc. have been working together to develop Savella^TM (milnacipran hydrochloride) as a marketable medication in the US. The medication was originally developed by the Pierre Fabre group, France’s second biggest independent pharmaceutical laboratory.

The safety and efficacy of Savella^TM (milnacipran hydrochloride) was established in two US pivotal phase III clinical trials involving over 2,000 patients with Fibro. The studies showed that Savella doses of 100 mg/day and 200 mg/day demonstrated statistically significant and clinically meaningful concurrent improvements in pain, patient global assessment, and physical function.

In both studies, a greater proportion of patients in the Savella^TM (milnacipran hydrochloride) treatment arms (100 mg/day and 200 mg/day) as compared with placebo treatment, at 3 months, experienced at least a 30% reduction in pain from baseline and also rated themselves as “very much improved” or “much improved” based on the patient global assessment. In addition, a greater proportion of patients treated with Savella as compared with placebo treatment met the criteria for a treatment response as measured by concurrent improvements in pain, physical function, and patient global assessment. In both studies, some patients who rated themselves as globally “much” or “very much” improved experienced a decrease in pain as early as week 1 of treatment with a stable dose of Savella^TM (milnacipran hydrochloride) that persisted throughout these studies.

The clinical development program demonstrated that Savella^TM (milnacipran hydrochloride) was safe and generally well tolerated. The most frequently occurring adverse reaction was nausea. Other common adverse reactions reported in these clinical trials were constipation, hot flush, hyperhidrosis, vomiting, palpitations, heart rate increased, dry mouth and hypertension. The majority of adverse reactions reported were mild to moderate in nature.

Savella^TM (milnacipran hydrochloride) has not previously been available in the US, but Forest and Cypress expect it to be available in American pharmacies by March 2009. Milnacipran, which is also marketed as Ixel, Dalcipran and Toledomin, is licensed for depression in a number of countries, including Austria, france, Israel and Japan. It is not licensed in the UK but has been used in research studies there.

Dr Daniel Clauw MD, Professor of Anesthesiology and Medicine (Rheumatology) at the University of Michigan and a member of FibroAction's Professional Advisory Board, has said that:

"Fibromyalgia is a complicated chronic pain condition, so it is important that physicians and patients have access to treatments that have been shown to help manage the symptoms that define the experience of fibromyalgia...The introduction of Savella is important because it is the first drug approved to treat the symptoms of fibromyalgia using a composite responder analysis.

Jay D. Kranzler, MD, PhD, Chairman and CEO of Cypress Bioscience explained that:

"Savella is the product of a unique clinical development program, one that considered a patient to be a responder to therapy only if they demonstrated concurrent clinically significant changes in multiple aspects of their fibromyalgia, including pain, patient global assessment and physical function. Savella is the only product approved for the management of fibromyalgia that used this complete responder analysis as its primary endpoint."

Most studies of medications for Fibro use pain scores as the only primary endpoint, although measures of functionality and the impact of the condition are sometimes used as secondary endpoints. The clinical development program for Savella^TM (milnacipran hydrochloride) was unique in its use of a composite responder analysis as the primary endpoint. This endpoint required individual patients to demonstrate concurrent improvement to multiple validated measures, including pain (visual analog scale), patient global assessment (patient global impression of change), and physical function (Short Form-36 Physical Component Summary).

Howard Solomon, Chairman and Chief Executive Officer of Forest said:

“We and our partner Cypress Bioscience are very pleased to receive marketing approval for Savella, following a first-cycle review, from the FDA. Fibromyalgia is a chronic and often debilitating condition with a significant need for new therapies. Savella is a valuable new treatment for patients afflicted with fibromyalgia. Its effectiveness was evaluated based upon the multiple symptoms included in the responder analysis.”

Jean-Pierre Garnier, Chief Executive Officer of Pierre Fabre SA, added that:

"This approval is crucial for Pierre Fabre Laboratories as milnacipran is one of the flagship products of our portfolio and represents another product of Pierre Fabre research registered in the United States”

Although the exact mechanism by which Savella^TM (milnacipran hydrochloride) improves the symptoms of Fibro is unknown, some researchers believe that abnormalities in certain brain neurotransmitters may be central to the condition. Savella^TM (milnacipran hydrochloride) blocks the reuptake of both norepinephrine and serotonin, and laboratory tests have suggested that it blocks the reuptake of norepinephrine most. This may be the mechanism by which Savella acts to improve the symptoms of fibromyalgia.

Important Safety Information from the press release

Savella^TM (milnacipran hydrochloride) is a selective serotonin and norepinephrine inhibitor (SNRI), similar to some drugs used for the treatment of depression and other psychiatric disorders. Antidepressants increased the risk compared to placebo of suicidal thinking and behavior (suicidality) in children, adolescents, and young adults in short-term studies of major depressive disorder (MDD) and other psychiatric disorders. Anyone considering the use of such drugs in a child, adolescent, or young adult must balance this risk with the clinical need. Short-term studies did not show an increase in the risk of suicidality with antidepressants compared to placebo in adults beyond age 24; there was a reduction in risk with antidepressants compared to placebo in adults aged 65 and older. Depression and certain other psychiatric disorders are themselves associated with increases in the risk of suicide. Patients of all ages who are started on Savella should be monitored appropriately and observed closely for clinical worsening, suicidality, or unusual changes in behavior. Families and caregivers should be advised of the need for close observation and communication with the prescriber. Savella is not approved for use in the treatment of major depressive disorder. Savella is not approved for use in pediatric patients.

Savella^TM (milnacipran hydrochloride) is contraindicated in patients taking monoamine oxidase inhibitors (MAOIs) concomitantly or within 14 days of discontinuing treatment of an MAOI or in patients with uncontrolled narrow-angle glaucoma.

Development of a potentially life-threatening serotonin syndrome may occur with agents that inhibit serotonin reuptake, including Savella^TM (milnacipran hydrochloride), particularly with concomitant use of serotonergic drugs (including triptans and tramadol) and with drugs which impair metabolism of serotonin (including MAOIs). The concomitant use of Savella with serotonin precursors is not recommended.

Blood pressure and heart rate should be monitored prior to initiating treatment with Savella^TM (milnacipran hydrochloride) and periodically throughout treatment. SNRIs, including Savella, have been associated with reports of increases in blood pressure and heart rate. Pre-existing hypertension, tachyarrhythmias and other cardiac diseases should be treated before starting therapy with Savella^TM (milnacipran hydrochloride). Savella^TM (milnacipran hydrochloride) should be used with caution in patients with significant hypertension or cardiac disease. For patients who experience a sustained increase in blood pressure or heart rate while receiving Savella^TM (milnacipran hydrochloride), either dose reduction or discontinuation should be considered.

Savella^TM (milnacipran hydrochloride) should be prescribed with caution in patients with a history of a seizure disorder, mania or controlled narrow-angle glaucoma.

Savella^TM (milnacipran hydrochloride) has been associated with mild elevations of ALT and AST (liver function tests). Rarely, fulminant hepatitis has been reported in patients treated with milnacipran. Savella^TM (milnacipran hydrochloride) should be discontinued in patients who develop jaundice or other evidence of liver dysfunction and should not be resumed unless another cause can be established. Savella^TM (milnacipran hydrochloride) should ordinarily not be prescribed to patients with substantial alcohol use or evidence of chronic liver disease.

As with other SNRIs and SSRIs withdrawal symptoms have been observed following discontinuation of milnacipran. A gradual dose reduction is recommended.

Hyponatremia may occur as a result of treatment with SSRIs and SNRIs, including Savella^TM (milnacipran hydrochloride). Discontinuation should be considered for patients with symptomatic hyponatremia.

SSRIs and SNRIs, including Savella^TM (milnacipran hydrochloride), may increase the risk of bleeding events. Patients should be cautioned regarding the risk of bleeding associated with concomitant use of Savella™ (milnacipran hydrochloride) and NSAIDs, aspirin, warfarin or other drugs that affect coagulation.

Male patients with a history of obstructive uropathies may experience higher rates of genitourinary adverse events.

According to the statement released, Savella^TM (milnacipran hydrochloride) is unlikely to be involved in clinically significant pharmacokinetic drug interactions. Pharmacodynamic interactions of Savella with other drugs can occur. Savella^TM (milnacipran hydrochloride) contains FD&C Yellow No. 5, which may cause allergic-type reactions in susceptible persons.

In clinical trials, the most frequently occurring adverse reaction was nausea. The most commonly occurring adverse reactions (≥ 5% and twice that of placebo) were constipation, hot flush, hyperhidrosis, vomiting, palpitations, heart rate increased, dry mouth, and hypertension.

FibroAction Website Survey

Fri, 16 Jan 2009 12:00:00 +0000

As we go into 2009, we would like to get some feedback on the FibroAction website, to help us as we work to improve the website this year.

A short survey has been put together and we ask that you complete the survey so that we can get as representative a response as possible. Your views could really help us make the website even better.

Click Here to take the survey.

Dr Andrew J Holman MD joins the FibroAction PAB

Sat, 17 Jan 2009 12:00:00 +0000

FibroAction are delighted to announce that Dr Andrew J. Holman MD has joined our Professional Advisory Board (PAB).

Dr Holman is a rheumatologist who is leading the way into novel avenues of knowledge and treatment regarding Fibromyalgia Syndrome. After 15 years of clinical practice focusing of Fibromyalgia Syndrome and rheumatoid arthritis, Dr Holman currently maintains a research practice to develop new diagnostic and treatment modalities. He has participated in numerous pharmacologic and nonpharmacologic trials studying the role of the autonomic nervous system in Fibromyalgia Syndrome, chronic widespread pain and autoimmune diseases. He was instrumental in the initial discovery and further development of treatment of Fibromyalgia Syndrome using dopamine agonists and published the first randomized, placebo-controlled trials of these agents, including ropinirole and pramipexole. Recent research has included evaluating a new type of pain related to intermittent, positional cervical spinal cord compression commonly found among patients with Fibromyalgia Syndrome.

Dr Holman gave a lecture, organised by FibroAction, at Guy's Hospital, London UK just before Christmas. A recording of the lecture 'Fibromyalgia in 2009: What It Is. What It Isn't. And What To Do About It' is available here.

Click here for more information on Dr Holman.

IBS Patient Expert Heather Van Vorous joins FibroAction PAB

Mon, 19 Jan 2009 12:00:00 +0000

FibroAction are delighted to announce that IBS patient-expert Heather Van Vorous has agreed to join our Professional Advisory Board.

Heather Van Vorous, an IBS sufferer since age 9, is the author of Eating for IBS and The First Year: IBS. Heather is also the company founder and CEO of Heather & Company for IBS, LLC, which owns and operates HelpForIBS.com and Heather's Tummy Care. HelpForIBS.com is the largest IBS organization in the world, with a hugely popular online community.

The website, HelpForIBS.com, originated in 1998 as an email letter Heather sent to other people with IBS, simply sharing what had helped her in the hopes that it would work for them as well. That letter grew to over 200 pages and eventually evolved into Eating for IBS, the only explicit dietary guide and cookbook for people with bowel disorders. Eating for IBS then led to Heather's second book, The First Year: IBS, a comprehensive view of the disorder and every way to successfully manage it. Together, these works have become the two best-selling, best-reviewed IBS books in America. Foreign publication is now in progress as well.

Heather's writing has led to an ongoing Canadian clinical research study of the groundbreaking dietary guidelines in Eating for IBS; this work also led to her inclusion in the 4th edition of Who's Who in Medicine and Healthcare. Today's Dietitian has featured Heather's IBS dietary guidelines, and she regularly exhibits at the international Digestive Disease Week conference to reach gastroenterologists and internists. As a result, Heather has become recognized as the foremost "patient-expert" on IBS in America.

Heather now teach classes on managing IBS through lifestyle modifications, and is planning to work with corporate HR departments to offer employee IBS education programs. She also hosts Heather Cooks!, the television cooking show for good digestive health, and is currently at work on her third IBS book.

For more information, see HelpForIBS.com.

VIP Football Tickets up for auction

Fri, 27 Feb 2009 12:00:00 +0000

Help support FibroAction and get a special day out to see a football match in style!

A VIP trip for 2 to Crystal Palace Football Club is being auctioned in aid of FibroAction by the charity auction site BuyOnceGiveTwice.

Including 2 Directors Box tickets and Executive Lounge tickets passes, the certificate up for auction entitles the bearer to two seats in the Directors Box at a Crystal palace Football Club match of your choice* plus two passes for the Executive Lounge

This is an opportunity to watch a football match as a VIP would. These tickets are not normally sold so their cost is unknown....but two normal tickets for regular seats in the stands would vary from £50 to £100. And this should be far more of a special day out than just going to watch a football match.

And, of course, it's in aid of charity!

Crystal Palace Football Club have home games scheduled with: Wolverhampton Wanderers on Tuesday 3 March; Preston on Saturday 7 March; Reading on Saturday 21 March; Cardiff City on Saturday 11 April; Derby County on Saturday 18 April; and Sheffield United on Sunday 3 May.

Crystal Palace Football Club donated this now-unwanted prize to an auction in aid of the PolkaDotGals Campaign for Fibromyalgia Syndrome awareness. Former model Suzi Walker, girlfriend of Crystal Palace Football Club Chairman Simon Jordan, has been helping raise awareness of the condition. Ms Walker has suffered with Chronic Fatigue Syndrome.

The auction will end on March 10th, so that there is plenty of the season left to take advantage of the certificate. However, if you really want the tickets, there is a Buy Now option.

Click here to access the auction.

* The passes are for a Season 2008/2009 Crystal Palace Football Club home match of your choice, subject to availability and to be confirmed with Crystal Palace Football Club. Please note that the dress code for the director's box is lounge suit, strictly no jeans, trainers or replica shirts.

Looking for help with awareness campaigns

Wed, 04 Mar 2009 12:00:00 +0000

Want to help raise awareness of Fibromyalgia Syndrome (Fibro)? Well, we're looking for some people to take part in awareness campaigns this spring.

We're particularly looking for a young man (20-35) with Fibro and a teenager (14-19) with Fibro. You would need to be able to get to London for the day and the campaign requires that you don't look very sick or disabled as it will be illustrating how FIbro is often an invisible condition.

If you're interested in helping and you think that you're suitable, please click here to email us asap!

If you don't fit the above criteria but you would like to help, then please contact us too.

New Number 10 E Petition for Fibromyalgia Syndrome sufferers

Thu, 05 Mar 2009 12:00:00 +0000

A new petition has been submitted to the Number10.gov.uk website by a UK Fibromyalgia Syndrome sufferer.

The petition reads:

"We the undersigned petition the Prime Minister to address the issue of lack of specialised Fibromyalgia care by the setting up of dedicated Regional NHS Fibromyalgia Clinics or Centres in Scotland, Wales, Northern Ireland and England."

To sign a petition, you must be a British citizen or resident and you will need to give your name, address and email on the form provided. Once you have "signed" the petition, you will receive an email asking you to confirm that you wish to add your name to the petition by clicking a link. Once you have done this, your name will be added to the petition. If the petition receives over 200 "signatures" then a response should be given by the Government.

Click HERE to get to the petition.

A petition asking "the Prime Minister to ensure that doctors are educated about Fibromyalgia and Myofascial Pain", that was submitted by FibroAction founder Lindsey Middlemiss, closed on 21 February 2009 with over 200 signatures - we are waiting to see if a response will be given.

Interested in Journalism or PR

Thu, 12 Mar 2009 12:00:00 +0000

Do you have an interest in PR or journalism? Are you passionate about helping to raise awareness of Fibromyalgia Syndrome (Fibro)?

Well, FibroAction are actively looking for more volunteers to help out with raising awareness of Fibro and we're looking for a voluntary PR coordinator.

No experience is necessary!

The most important thing is that you are passionate about raising awareness of Fibro, but an interest in PR or journalism and being a people lover would be definite advantages.

Training will be given, making this an ideal voluntary post if you would like to get into PR or journalism but need to get relevant skills and experience and build your confidence. The role will also give you an opportunity to learn about the worlds of PR and journalism and build up contacts.

Maybe you're out-of-work because of Fibro and want something to fill that gap in your CV? Maybe you'd just like something to give you an interest? This should be a fascinating and exciting role where you get to make a real difference.

The hours and the role are very flexible, but we would ask that you commit to trying to do a couple of hours a week.

If you have internet access, then location doesn't matter. If you want to work at home in your pyjamas, that's fine by us!

If you are interested in getting involved, please contact us.

Telegraph article

Wed, 18 Mar 2009 12:00:00 +0000

FibroAction founder Lindsey Middlemiss was this week mentioned in the health section of the Daily Telegraph, as part of an article on self-diagnosis using the internet.

Lindsey comments:

"Getting a diagnosis of Fibromyalgia Syndrome can be a very lengthy process and it isn't uncommon for patients to learn about the condition online before they learn about it from their doctor. Patients must always remember that a diagnosis must always be confirmed by a doctor, preferably a specialist, but the internet can help them to get to that stage.

The internet is a tremendous resource for patients and doctors alike and whilst patients have to learn how to best use it, doctors also need to acknowledge that patients usually know their own symptoms very well and that not all information available on the internet is dubious.

The internet can be incredibly useful and FibroAction is proud to be a part of that."

To see the article on the Telegraph website, click here.

Reputable sources of information on Fibromyalgia Syndrome on the internet include:

The FibroAction About Fibro section
The NHS Choices Guide to Fibromyalgia, which FibroAction helped update in 2008

Signs to look out for that suggest a site may be reputable include:

Being the official site of a government organisation, such as the NHS, a reputable and well known organisation, such as the British Medical Association,or a national registered charity, such as FibroAction.
Having references to the medical literature. If there are not references with the information, the organisation should be able to supply them. Be wary of references that just point to a group of websites or a few in-house publications or even publications all by the same doctor. Look for journal names such as The Journal of Pain (often abbreviated J Pain) or the Journal of Rheumatology (often abbreviated J Rheum) and world-renowned expert names such as Daniel Clauw MD, Muhammed Yunus MD and Patrick Wood MD among many others.
When was the information last updated? If this isn't listed, again, ask the organisation. Research on Fibromyalgia Syndrome is coming out all the time, so information that's even a few years old may be out of date.

FibroAction is trying to encourage positive media coverage of Fibromyalgia Syndrome but it is not something that we currently have much resources to devote to. If you would like to help with this, please contact us. No experience is necessary and training will be given as needed - in fact it would be a great opportunity if you would like to get into journalism or PR but could do with some training,experience and confidence boosting! Helping out could just involve an hour a week, working from home.

APPG on Fibromyalgia Syndrome Meeting

Sat, 21 Mar 2009 12:00:00 +0000

On Wednesday 18th March, a meeting of the All Party Parliamentary Group (APPG) on Fibromyalgia Syndrome was held in the Jubilee Room at the Houses of Parliament.

FibroAction founder and charity, Lindsey Middlemiss, attended the meeting, which had been requested by FMA UK in order to ask MPs for their advice in how to raise awareness of Fibromyalgia Syndrome (Fibro).

The meeting was chaired by Rob Wilson, MP for Reading East, who leads the APPG on Fibromyalgia Syndrome. Amongst the MPs in attendance was Richard Benyon, MP for West Berkshire, where FibroAction is based and the Shadow Minister for Agriculture, Fisheries and Wildlife. Richard has been very supportive and it was great that he took time out of his very busy schedule to attend this meeting.

The APPG meeting was a particularly positive and proactive one and it is hoped that a 90 minute debate in the Westminster Hall at the Houses of Parliament will be secured on Fibromyalgia Syndrome. MPs from the main 3 parties will make speeches and a Government minister will have to attend and respond to the debate.

FibroAction will be helping brief the MPs who have volunteered to kick start the debate as they will need accurate and up-to-date information on the current situation. The MPs present were interested to learn of the NHS Fibro clinics, such as the one at Guy's Hospital, and of NHS Direct updating the online information on Fibro last year thanks to FibroAction, as they had previously been unaware that any progress had been made at all.

Hopefully the debate will be secured and supported. Please make sure that you write to your MP, telling them about how you have struggled with Fibro and asking them to support any debate as well as the APPG on Fibromyalgia Syndrome - or even better, go and see them at their constituency office so that they can put a face to the name.

2009 Fibromyalgia Syndrome Awareness Campaign 1 in 50

Sat, 04 Apr 2009 12:00:00 +0100

FibroAction's awareness campaign theme for the 2009 International Fibromyalgia Awareness Day on May 12th will be "1-in-50" focusing on how many people do not realise that they know someone with Fibro, but that as Fibro affects at least 1-in-50 people in the UK, most people will know someone with the condition.

Posters and videos to support this year's campaign are being developed and will be available on the FibroAction website and for use by support groups by May 12th.

There are a number of ways to get involved in the 2009 Awareness Campaign "1-in-50":

Distribute information about Fibro and the 2009 Awareness Campaign "1-in-50" in your local area and on blogs, discussion boards and social network sites, such as Facebook and MySpace.
Host an event yourself or with a local support group and send us the details to publicise over the next month. Click here to email us about your event. Don't forget to send us photos afterwards for a post-event slide show on this website!
Organise a fundraising event with a JustGiving page - you can do this for sporting events, other sponsored activities, for a personal occasion or in memory of someone. The event doesn't even have to take place on May 12th. Click here to set up a JustGiving page.
Make a resolution to be upfront about your Fibro! Having Fibromyalgia Syndrome (Fibro) shouldn't be embarrassing, but many people find it easier to say "oh, I have something like Arthritis" when asked what they have, instead of trying to explain what Fibro is. If we all stop doing this and start telling people about Fibro, they will realise that they know "1-in-50".
Share your personal story with the media. Local papers and radio stations often like to feature local people and the International Awareness Day on May 12th is a reason for them to tell your story. If you don't want to or can't do this, then why not ring up or text a radio show and request a song "for everyone with Fibromyalgia Syndrome as it's our International Awareness Day"?
Go and see your MP and tell them that Fibro affects 1-in-50 as this is something many MPs simply don't realise. Invite them to any events your local support group may be organising. Ask them to join the All Party Parliamentary Group (APPG) on Fibromyalgia Syndrome and support any debates on Fibromyalgia Syndrome.

Check back regularly for updates on International Fibromyalgia Syndrome Awareness Day and the 2009 Awareness Campaign "1-in-50".

Lyrica refused European Marketing Approval

Thu, 23 Apr 2009 12:00:00 +0100

FibroAction has been informed that pharmaceutical giant Pfizer have been refused marketing approval for Lyrica as a treatment for Fibromyalgia Syndrome (Fibro) in Europe.

This follows the refusal of the European Medicines Agency (EMEA) to grant a marketing approval for Cymbalta as a treatment for Fibro in October 2008.

Currently, there are no treatments for Fibro which have European Marketing Approval.

More details to follow shortly.

Response from FibroAction to Lyrica EU Refusal

Thu, 23 Apr 2009 12:00:00 +0100

Press release 23 April 2009

Second blow for millions of Fibromyalgia Syndrome sufferers as European Medicines Agency rejects another drug

European sufferers of a painful chronic condition called Fibromyalgia Syndrome have received a second severe blow with the news that Pfizer’s Lyrica has been refused marketing approval as a treatment for the condition.

This comes after the Committee for Medicinal Products for Human Use (CHMP) at the European Medicines Agency (EMEA) also rejected a similar application for the drug Cymbalta (Duloxetine hydrochloride) back in October.

There are currently no specifically approved treatments for Fibromyalgia Syndrome (Fibro) in Europe.

Lyrica (generic name Pregabalin) was the first drug to get FDA approval in the USA for the treatment of Fibro, way back in 2007. Since then two other drugs – Cymbalta and Savella – have also been approved by the FDA as treatments for Fibro in the USA.

Lyrica has been an EMEA authorised treatment since July 2004 and has marketing approval as a treatment for neuropathic pain (pain from nerve damage), epilepsy in patients who have partial seizures and generalised anxiety disorder.

Pfizer applied for a change to the marketing authorisation so that Lyrica could be officially indicated as a treatment for Fibromyalgia Syndrome and marketed for this purpose. The CHMP refused this change, citing as reasons that they were concerned that the benefits of Lyrica in treating Fibro had not been shown either in the short or long term and that they were concerned that the safety and effectiveness of Lyrica had not been shown in patients from the EU.

FibroAction founder Lindsey Middlemiss commented today:

“FibroAction are disappointed to learn of the refusal by the CHMP to allow the clinical indications of Lyrica to be extended to include Fibromyalgia Syndrome. The millions of people with Fibromyalgia Syndrome across Europe desperately need the help that a properly approved drug would bring.

It is concerning that the CHMP are saying that they will not look at data gathered from outside the EU. This insular view seems extraordinary given that Pfizer presented them with data concerning the use of Lyrica as a treatment for Fibro in over 3,000 patients. Most drug trials for Fibro are done in the US as the climate for research into this complex condition is better over there. Does this mean that no drugs will be able to get approval in the EU as treatments for Fibro?”

This second negative response from the CHMP is likely to perpetuate the myth that because no drugs have marketing approval in the EU for Fibromyalgia Syndrome, there are no treatments available for the condition. Because Pregabalin already has EMEA authorisation, it is available on prescription if a doctor considers that it is an appropriate treatment. This is also true of many other treatments for Fibro, some of which are already widely used.

UK Parliament Westminster Hall debate on Fibromyalgia Syndrome to take place

Fri, 01 May 2009 12:00:00 +0100

FibroAction is delighted to announce that the All Party Parliamentary group on Fibromyalgia Syndrome has secured a Westminster Hall debate on Fibro. Unfortunately, the debate is scheduled for Tuesday morning, leaving very little time.

The debate will be from 9.30am to 11am on Tuesday 5th May (next Tuesday). The time for the debate was only confirmed yesterday, so with the Bank Holiday on Monday, it's meant that preparations are having to be made very fast.

Please take the time today if you can to email or call your MP, explain that you are one of their constituents and that you have Fibro. Ask them to attend the debate on Tuesday. You can find out who your MP is and how to contact them using the Find Your MP website.

Hopefully the debate will be televised - if we get more details on this, we'll let you know.

Westminster Hall debates are also open to the public to attend (but obviously not take part in!). If you can make it to London for Tuesday morning, then it would be great to have some Fibromites there to show the MPs that we're interested in what they say and do about Fibro. For more information on attending Westminster Hall debates, please see the UK Parliament website here. Do please note that getting through security can take some time, so ideally you would arrive at the visitors entrance to the Houses of Parliament by around 8.30am.

Update

You will hopefully be able to watch the debate via the Parliament Live TV Website - click here on Tuesday.

Follow the Parliamentary debate on Fibromyalgia Syndrome on Twitter

Tue, 05 May 2009 12:00:00 +0100

FibroAction founder Lindsey Middlemiss is at Westminster today. Follow her updates on Twitter at http://twitter.com/fibroaction.

First UK Parliament Debate on Fibromyalgia Syndrome

Tue, 05 May 2009 01:19:00 +0100

The first ever UK Parliamentary debate on Fibromyalgia Syndrome took place today.

The Westminster Hall debate on Fibromyalgia Syndrome (Fibro) was secured by Rob Wilson, MP for Reading East and chair of the All Party Parliamentary Group on Fibromyalgia.

MP attendance was negatively affected by the short notice given for the debate and by it being the first debate of the first day back after a Bank Holiday weekend. However, nine MPs turned up, as well as Ann Keen MP, the Parliamentary Under Secretary of State for Health Services, who was there to answer the debate as her responsibilities include long-term health conditions.

FibroAction founder Lindsey Middlemiss was present at the debate, providing updates on Twitter throughout - the first time FibroAction have "tweeted" an event. Click here for the @FibroAction twitter feed. With Lindsey in the public viewing area were Patsy Baker, group leader of the new Guy's London Fibro Support, and Alice Reeves, a Fibro sufferer from Cheltenham, among others.

A more comprehensive report of the debate and its implications will be posted shortly.

You should be able to watch the debate on the Parliament TV website archives here.

Application for a UK NICE Guideline for Fibromyalgia Syndrome is Unsuccessful

Wed, 06 May 2009 12:00:00 +0100

The application for a NICE Guideline on Fibromyalgia Syndrome to be developed has been rejected by the National Institute for Clinical Excellence (NICE), it was revealed at a parliamentary debate yesterday.

The application was submitted by FMA UK and Dr Kim Lawson PhD, a member of the Advisory Boards of both FibroAction and FMA UK, in July 2007. No reponse was forthcoming from NICE until yesterday's Westminster Hall debate on Fibro was announced, when NICE responded to say that the application had been unsuccessful.

Although NICE Guidelines for a condition would usually include a care pathway for diagnosis, which would be of help to UK Fibro sufferers, it must be remembered that the role of NICE is to decide on what approaches are most cost effective.

This was brought up in yesterday's Westminster Hall debate on Fibro and it remains a concern that, while many doctors do not have an up-to-date understanding of Fibro and while there are no medications with marketing approval in the EU specifically for Fibro, a NICE Guideline may be more of a hindrance than a help. This is especially true given the cost implications as some of the newer medications for Fibro are relatively expensive, whereas widely used but not hugely effective old medications, such as amitriptyline, are relatively cheap. At this stage, a NICE Guideline may serve to recommend that the more expensive treatments for Fibro are not tried until there is more European evidence for their cost-effectiveness.

Report on the first UK Parliament Debate on Fibromyalgia Syndrome

Wed, 06 May 2009 12:00:00 +0100

Report by Lindsey Middlemiss

The first ever UK Parliamentary debate on Fibromyalia Syndrome (Fibro) took place in the Westminster Hall at the House of Parliament on Tuesday 5th May 2009.

The debate was secured by Rob Wilson, MP for Reading East, and the Chair of the All Party Parliamentary Group on Fibromyalgia Syndrome. Special thanks to go Rob, and his Parliamentary aides Marc and Gemma, for all the work they did in both securing the debate and preparing for it.

Despite attendance - and preparation for the Minister - being negatively affected by the debate being on the morning of the first day back after a Bank Holiday weekend and it clashing with a number of meetings, 10 MPs turned up. Ann Keen MP, the Parliamentary Under Secretary of State for Health Services attended to answer the debate as long-term conditions are her responsibility at the Department of Health. Speakers included: Rob Wilson, MP for Reading East; Philip Hollobone, MP for Kettering; Martin Horwood, MP for Cheltenham; Roger Williams, MP for Brecon and Radnorshire; Norman Lamb, MP for North Norfolk; Bob Spink, MP for Castle Point; Anne Milton, MP for Guildford

I attended the debate, providing information to MPs and providing updates via Twitter - the first time FibroAction have ever "tweeted" an event!

This debate is an important step forward for the millions of Fibro sufferers in the UK. I felt that Tuesday’s debate was positive, although no definite actions were agreed on. I was able to have a chat with Ann Keen after the debate and hope to be able to meet with her in the near future to discuss ways in which to improve awareness and education relating to Fibro.

Key points

Key points to come out of the debate were:

Fibro is surprisingly common.

Written responses to MPs' questions about Fibro have been unencouraging, with the Government having no plans to improve the treatment of people living with the condition, collect data on the condition or raise awareness of it.

Chief Medical Officer, Sir Liam Donaldson, recognised the impact of Fibro and its prevalence in the UK as a cause of chronic pain in his annual report of 2008.

A major initiative to widen access to pain services is badly needed, something that Ann Keen MP agreed with, but she was told that she needed to follow through on this.

The application for a NICE Guideline on Fibromyalgia Syndrome has been rejected. There was some debate about whether a NICE Guideline being implemented at this stage could be detrimental, and could just lead to doctors being unable to prescribe some medications already being used as treatments for Fibro. Ann Keen MP emphasised that NICE is independent of the Government, which makes it difficult for her to intervene.

Lengthy diagnosis times is a particular issue for sufferers.

GP education regarding Fibro should be a priority. It is not good enough just to look at the training of new doctors coming through the system. As Norman Lamb MP said, "We need to focus on continuing professional development for those who are already in post and who are all too often failing to give their patients an adequate or accurate diagnosis."

Help from the Government is needed in raising awareness of Fibro.

Effective treatment of FIbro needs to available around the country, on the NHS, and with services signposted by the NHS and not just voluntary bodies. At the moment, although many NHS consultants provide specialist Fibro services, these are not on the NHS Choose and Book system as specialist services and so are difficult to access. It was mentioned that one of the common problems for Fibro patients is that the lack of NHS treatment and understanding means that they need private treatment, and their families build up large debts in their attempt to help. Specialist services already running that were mentioned by name included:

Professor John Davies and the NHS FM Clinic at Guy's Hospital, London;
the pain management service at Russells Hall hospital in Dudley;
the multi-disciplinary team at Bolton (where there is a specialist Fibro course and clinic);
Poole Hospital (where Dr Selwyn Richards provides specialist Fibro clinics);
and the course for Fibro patients being run by Essex community services in conjunction with Basildon University hospital.

People with Fibro often really struggle to access benefits.

More than 60% of all health care occurs in the community these days and one of the biggest challenges facing all Governments in the next 20 or 30 years will be the management of long-term conditions. That will include the management of chronic pain.

The NHS websites have been simplified to NHS Choices, a website for patients, and NHS Evidence, a website for healthcare professionals.

Fibro should fall under the Musculoskeletal Framework. This framework should help to improve diagnosis, management and treatment of Fibro and also supports an 18-week target for the time from referrals from GPs to the start of hospital treatment

Quotes

Highlighted quotes from the debate:

"I believe that the sheer scale of the illness and the suffering that results from it mean that it is high time fibromyalgia was taken seriously as an issue." Rob Wilson MP.

"...too many people are still needlessly suffering in pain while medical professionals struggle to reach a diagnosis." Rob Wilson MP.

"Getting an accurate diagnosis [of Fibro] is difficult, and about half of our GPs admit that the condition is often misdiagnosed." Rob Wilson MP.

"There is only so much that the third sector can do. Is it not time for the Department [of Health] to consider a nationwide awareness campaign to highlight Fibromyalgia Syndrome, and the importance of fast diagnosis and the provision of treatment? Do the millions of people who suffer with the illness not deserve at least that from their NHS?" Rob Wilson MP.

"One of the common problems for fibromyalgia patients is that the lack of NHS treatment and understanding means that they need private treatment, and their families have built up large debts in their attempt to help." Rob Wilson MP.

"Sufferers often have a sense that no one believes them, especially when they have to apply for benefits because they cannot keep their employment. They feel that no one believes that the condition is disabling, so they are left utterly alone. " Norman Lamb MP.

"Its [Fibro's] impact on relationships, social lives and the capacity to work is substantial. It is often the case that conditions such as fibromyalgia, myalgic encephalomyelitis and chronic fatigue syndrome have a greater impact on people’s lives and their capacity to function as human beings than many conditions that attract much greater attention in public discourse and in Parliament." Norman Lamb MP.

"I recognise how distressing fibromyalgia can be to those living with the condition and to their families, and I know that much of that distress is caused by difficulties recognising, acknowledging and accepting the condition and its impact. Like other chronic conditions, fibromyalgia can significantly affect physical and emotional well-being and disrupt work, social and family life." Ann Keen MP, Parliamentary Under Secretary of State for Health Services.

"I pay tribute to the hard work and dedication of the voluntary sector in helping people with fibromyalgia, especially FibroAction and the Fibromyalgia Association UK." Ann Keen MP, Parliamentary Under Secretary of State for Health Services.

Further resources

Click here to see the @fibroaction Twitter feed with its updates throughout the debate.

Watch the video of the debate on the Parliament TV website here.

Click here for the Hansard transcript of the debate.

Launch of the Fibro Support Group Guys London

Fri, 29 May 2009 12:00:00 +0100

A new support group for people living in London or attending the NHS FM Clinic at Guy's Hospital, London, is being launched on Monday.

The Fibro Support Group - Guys London is being launched in Atrium 1 at Guy's Hospital on Monday 1st June.

The launch day will start at 3.30pm with a number of information stands for people to browse and people to ask advice from - including FibroAction. From 5.45pm, there will be talks followed by a showing of the excellent DVD 'Fibromyalgia: Show Me Where It Hurts'.

Membership of the Fibro Support Group - Guys London includes: the helpline service, including pharmacist advice and a benefits advisor; quarterly newsletter & email updates; a friend and buddy system to put people in touch with other people in similar situations. Monthly meetings will also be organised, starting in south London districts.

For more details of the launch, including contact details for the group (note that the website is not yet , click here to download the itinerary poster.

FibroAction founder to speak at pain conference

Sat, 06 Jun 2009 12:00:00 +0100

FibroAction founder Lindsey Middlemiss will be speaking at the 'Brains, Pains & Gains' conference taking place on Thursday 9 July.

The one day conference on pain and pain management is being organised by the West Berkshire Neurological Alliance (WBNA), of which FibroAction is a member, and is for both the professional and the patient.

There are still places available, so if you would like to register, download a registration form and get it off to the WBNA as soon as possible.

The conference, which is the fourth one-day conference organised by the WBNA, looks set to be as good as the previous and highly acclaimed conferences, with an excellent venue and high calibre speakers lined up.

As well as Lindsey Middlemiss, who will be talking about the patient perspective on pain and pain management, speakers include Dr Katy Vincent from the Oxford Centre for the Functional Magnetic Resonance Imaging of the Brain. Functional Magnetic Resonance Imaging or fMRI is used to show how the body responds to stimuli and has been used in research to show the hypersensitivity to pain that is characteristic of Fibro.

The conference will also cover the basic science of pain and the treatment of pain. Lunchtime workshops will cover Tai Chi Chuan, Hypnotherapy and Relaxation and Myofascial Release Techniques.

The conference is taking place at the Arlington Arts Centre, near Newbury, West Berkshire. This state of the art venue is easily accessed by rail or road, being close to Junction 13 of the M4, where it intersects with the A34. Minibus transport is available from Newbury station to the venue and back again in the evening.

The 'Brains, Pains & Gains' conference is currently supported by Greenham Common Trust, Berkshire West NHS Partnership Development Fund, the Mary Hare School, Publicity Projects (Newbury) Ltd, the BG Group Trust and the British Polio Fellowship Berkshire Branch.

The WBNA is currently carrying out a Pain Survey to determine the un-met needs of people living with pain in their area and the results will be presented at 'Brains, Pains & Gains'. This survey is only open to people living with pain who live or work in the Berkshire West NHS areas of West Berkshire, Reading & Wokingham districts. If you live or work in those areas and are living with pain, the anonymous survey is available here.

Click here for the conference programme and registration form.

For more information, see www.wbna.org.uk.

Support UK Fibromyalgia Syndrome sufferers by becoming a Friend of FibroAction

Sat, 06 Jun 2009 12:00:00 +0100

FibroAction are pleased to announce that applications are now being accepted for the Friends of FibroAction scheme.

The Friends of FibroAction scheme is designed to let you support FibroAction and everyone in the UK affected by Fibro through the provision of information, advocacy and awareness efforts, education of healthcare professionals and research. The scheme will enable FibroAction to do even more work, whilst giving our supporters further information and offers.

In recognition of the people who first support us by joining the Friends of FibroAction scheme, a special Founding Friends of FibroAction list is being built.

The founding Friends of FibroAction will:

~ Receive an exclusive limited edition t-shirt.
~ Have their names listed (with permission only) as a founding Friend of FibroAction who helped start a scheme to make a difference to people affected by Fibro.
~ Receive a quarterly magazine Fibro ACTION when the founding Friends of FibroAction list is full.
~ Receive discounts for our online Spreadshirt store.
~ Receive priority notice of events.

Membership of the Friends of FibroAction scheme for supporters in the UK is £25 a year, whilst International Membership for those supporters living outside the UK is £40 a year. Click on the link below to download a membership application form to join as a Founding Friend of FibroAction.

Click here for more details.

Follow FibroAction on Twitter tonight from the Times Cheltenham Science Festival

Sat, 06 Jun 2009 04:00:00 +0100

FibroAction founder Lindsey Middlemiss is hoping to tweet from the lecture Pain at the Times Cheltenham Science Festival tonight. You can follow updates on Twitter by watching or following the FibroAction Twitter account - you don't have to registered on Twitter yourself.

The lecture Pain is being sponsored by Pfizer and will see Professor Robert Winston be joined by neuroscientist Professor Irene Tracey from the University of Oxford fMRI Centre , Michael Heinrich, Professor at the school of Pharmacy, University of London and chronic back pain sufferer Maggie Hayward as they explore living with pain and how it can be managed.

For more information, click here.

The lecture starts at 8pm. Click here for the FibroAction Twitter account.

E Newsletter Editor wanted

Mon, 15 Jun 2009 12:00:00 +0100

FibroAction are looking for a volunteer e-newsletter editor to take on the role of putting together the monthly e-newsletter.

The role simply involves putting the newsletter together and sending it out - although if you would be interested in helping write articles for the website as well, then that's great. Some knowledge of basic HTML would be very useful.

The volunteer e-newsletter editor would need to commit to working on the e-newsletter each month, barring illness, and it could work well as a shared job.

If you think you could help out and take on the role of e-newsletter editor, please do contact us asap.

Events in July

Fri, 26 Jun 2009 12:00:00 +0100

Two exciting events coming up in July:

Fibromyalgia Support Northern Ireland 6th International Conference

Download a conference brochure here.

Organiser: Fibromyalgia Support N. Ireland
Type of event: Conference
When: Saturday 4th July
Where: Lodge Hotel, Lodge Road, Coleraine

Details: Fibromyalgia Support Northern Ireland's 6th International Conference is a one-day conference, with speakers including FibroAction Advisory Board members Dr Patrick Wood MD and Dr Kim Lawson.

Check the Fibromyalgia Support Northern Ireland website for more details.

Brains, Pains and Gains

Download a conference brochure here.

Organiser: The West Berkshire Neurological Alliance
Type of event: Conference
When: Thursday 9th July
Where: Arlington Arts Centre, West Berkshire

Details: The West Berkshire Neurological Alliance's 2009 conference Brains, Pains and Gains will be on pain and pain management.

FibroAction founder Lindsey Middlemiss will be speaking at this event, as will Dr Katy Vincent from the Oxford fMRI Centre (fMRI is the modern imaging technique that has been used to show the hypersensitivity to pain of Fibro).

Groups of 3 or more booking together can get a concessonary rate.

For more details, see the West Berkshire Neurological Alliance website or click here to download a program and registration form.

Please note that as FibroAction are not directly organising these events, any queries shoudl be directed to the conference organisers. FibroAction will however have a presence at both events.

Jacqui Mayes Nutrition and Fibro Talk

Sat, 04 Jul 2009 12:00:00 +0100

Event: Jacqui Mayes: Nutrition & Fibro
Organiser: The Reading Fibromyalgia Support Group
Type of event: Talk
When: Monday 13th July
Where: Prospect Park Hospital, Reading, Berkshire

Nutritionist Jacqui Mayes will be giving a talk on Nutrition & Fibro to the Reading Fibromyalgia Support Group on Monday July 13th, at 6pm.

Jacqui developed Fibro herself Following the birth of her second child and spent 5 years trying many conventional and alternative approaches to find a way of managing her condition. Nutritional Therapy helped her to get control of her Fibro and Jacqui was so impressed with the results that she decided to train as a Nutritional Therapist, completing a BSc (Hons) in Nutritional Therapy at Middlesex University. Her research thesis focused on ‘Fibromyalgia and Food’ investigating the link between foods consumed and Fibromyalgia symptoms. Jacqui published an extended abstract of her research thesis on the FibroAction website in March, which can be viewed here.

Jacqui is a full member of the British Association of Applied Nutrition and Nutritional Therapy (BANT) and the Complementary and Natural Healthcare Council (CNHC). She is also a qualified Dietary Analyst and NLP coach. For more information on Jacqui, see www.jacquimayes.co.uk.

Contact Jo Marsh on jomarsh10@hotmail.com for details of the talk.

Ann Keen MP to address meeting of the APPG on Fibromyalgia Syndrome

Sat, 04 Jul 2009 11:00:00 +0100

The Parliamentary Under-Secretary of State for Health, Ann Keen MP, will address a meeting of the All Party Parliamentary Group (APPG) for Fibromyalgia Syndrome on Monday.

Having the Minister agree to attend the meeting is a significant step forward for the APPG, and follows on from the parliamentary debate on Fibromyalgia Syndrome on May 5th 2009. Click here for the report on the parliamentary debate.

FibroAction are grateful for the amount of work that Rob Wilson MP, chair of the APPG on Fibromyalgia Syndrome, and his parliamentary team have done on the Fibro issue over the last few months.

The meeting on Monday will be at 3.15pm in Committee Room 17 at the House of Commons. There is limited space, but we hope to bring you a comprehensive report of the meeting.

APPG Meeting Cancelled

Mon, 06 Jul 2009 11:00:00 +0100

The meeting of the All Party Parliamentary Group (APPG) on Fibromyalgia Syndrome, scheduled to take place this afternoon has been cancelled. The main speaker, Ann Keen MP, the Parliamentary Under Secretary of State for Healthcare, pulled out of the meeting at short notice.

We will let you know if and when this meeting is rescheduled.

FibroAction shortlisted to win a Charity Times Award

Fri, 17 Jul 2009 12:00:00 +0100

We are delighted to announce that FibroAction has been shortlisted to win a Charity Times Award in the Best New Charity category.

The Charity Times Awards continue to be the pre-eminent celebration of best practice in the UK charity and not-for-profit sector, with 2009 being the tenth year of the awards.

The winners will be announced on Thursday 9th September 2009 at the Awards Gala Dinner, which will be hosted this year by the comedian Chris Barrie.

To see the complete shortlist, please click here.

Swine Flu and Fibromyalgia Syndrome information

Sun, 30 Aug 2009 12:00:00 +0100

The Swine flu pandemic poses a particular challenge to the Fibro community. Fibro sufferers may mistake flu symptoms for a Fibro flare, delaying diagnosis; they may feel more ill with the flu because of the overlap between swine flu and Fibro Symptoms; and some Fibro sufferers may be at higher risk of developing complications. The following information may be of use.

Swine Flu Information

Detailed information on swine flu is available on the NHS Choices website here.

Many of the symptoms are similar to a Fibro flare - fatigue, generalised or joint pain, upset tummy, headache, even feeling feverish. However some, such as a sudden cough developing, are not typical of a Fibro flare. A temperature of 38C or more is the critical sign of possible swine flu.

Prevention

Basic hygiene measures may help protect you from developing swine flu:

• Ensure everyone washes their hands regularly with soap and water.
• Clean surfaces regularly to get rid of germs. This is especially important if someone if your house has swine flu. Anti-bacterial cleaning wipes make it easier to frequently wipe down surfaces.
• Use tissues to cover your mouth and nose when you cough or sneeze,
• Place used tissues in a bin as soon as possible.
• If your partner has swine flu or is developing flu-like symptoms, avoiding hugging and kissing and, if possible, sleep separately.

Avoid unnecessary travel and avoid crowded places if possible. If you can work from home and change doctors appointments to telephone consultations, then do so.

Preparing for Swine Flu

If you do get swine flu, it will be helpful if you have made some basic preparations:

• Get a "flu buddy" who can get you prescriptions, medications and other supplies if you fall ill and cannot leave the house. Ideally this should be someone who does not live with you, but who lives close by, as housemates of sufferers are likely to become ill themselves.
• Make sure you have basic flu medications: paracetamol or co-codamol, decongestants, cough syrup, throat lozenges, etc. Ensure that you know which medications contain paracetamol as it is dangerous to overdose on paracetamol.
• Check that you are not about to run out of any medications you take for your Fibro.
• Stock up on basic supplies such as tissues and toilet paper.
• Stock up on easy to eat foods that require little or no preparation, such as soup.

If you have flu-like symptoms

If you have flu-like symptoms and are concerned that you may have swine flu, the NHS recommends that you:

Read up on swine flu symptoms on the NHS website here.
Stay at home and check your condition at the National Pandemic Flu Service. The National Pandemic Flu Service is a self-care service that will asses your symptoms and, if required, provide an authorisation number which can be used to collect antiviral medication from a local collection point.
You should call your GP directly if: you have a serious underlying illness; you are pregnant; you have a sick child under one year old; your condition suddenly gets much worse; or if your condition is still getting worse after seven days (or five days for a child).

If you develop severe symptoms, such as chest pain or significant difficulty in breathing, then seek medical help straight away.

Treatment

Treatment strategies used to lessen the symptoms of colds and normal flu may help you feel better if you have swine flu - take paracetamol-based cold remedies to reduce fever and other symptoms, drink plenty of fluids and get lots of rest.

If the flu causes a major flare of your Fibro, then other medications may help - for instance if you are unable to sleep or if you get muscle spasms. Talk to your GP if you have a specific problem like this and they may prescribe a short course of an extra medication. Heat and TENS machines may also be helpful. Be aware that joint or muscle pain may be a symptom of the flu itself and may be best treated with paracetamol to reduce your fever.

Fibro should be considered in the high-risk category with regards to swine flu as it is a chronic neurological disorder that can negatively affect the immune system by making you run down. It is therefore likely that if your doctor considers that you have swine flu, they will consider prescribing an anti-viral, most probably Tamiflu.

Information on the anti-viral medications used is available on NHS MedGuides here.

The most common side effects of Tamiflu are nausea, vomiting, diarrhoea, stomach ache and headache. These side effects mostly occur only after the first dose of the medicine and will usually stop as treatment continues. The frequency of these effects is reduced if the medicinal product is taken with food.

However, if you have a mild case, your doctor may decide to not prescribe you Tamiflu. Its use in a mild case will only serve to reduce how long you are sick by a day or so and the side effects may make you feel worse.

Make sure that any doctor you see about swine flu is aware that you have a chronic health condition and knows of any medications you may already be taking.

Edited 30 August 2009

Breaking News Lyrica appeal refused in Europe

Mon, 27 Jul 2009 12:00:00 +0100

FibroAction have just been informed by Pfizer that their appeal to get marketing approval for Lyrica as a treatment for Fibromyalgia Syndrome (Fibro) in the EU has been rejected by the Committee for Medicinal Products for Human Use (CHMP) at the European Medicines Agency (EMEA).

This appeal followed the refusal in April of the European Medicines Agency (EMEA) to grant a marketing approval for Lyrica as a treatment for Fibro in Europe.

Currently, there are no treatments for Fibro which have European Marketing Approval. Lyrica, along with Cymbalta (Duloxetine) and Savella (Milnacipran) are approved by the American Food and Drug Administration (FDA) as treatments for Fibro.

More details to follow shortly.

Panorama apologise for The Trauma Industry error

Wed, 29 Jul 2009 12:00:00 +0100

Following Monday's showing of the Panorama programme The Trauma Industry, which incorrectly referred to Fibromyalgia Syndrome as a psychological disorder, FibroAction have been in contact with the Panorama team to address the issues raised by the show, which upset many Fibro sufferers around the UK.

Panorama have now released a statement on their website apologising and have removed the programme from the BBC iPlayer while it is edited to correct the issue.

FibroAction founder & chair, Lindsey Middlemiss, said today:

"I am delighted that Panorama have taken the steps they have to address the issue of The Trauma Industry incorrectly referring to Fibromyalgia Syndrome as a psychological disorder. My personal thanks go to Panorama's editor Sandy Smith and the programme's director Kevin Toolis for the lengths they have gone to address this mistake.

Hopefully The Trauma Industry will now be able to better highlight the problems faced by people suffering following trauma and address the issues that the process of seeking compensation is open to fraud & may not always be the best thing for the health of genuine sufferers."

Panorama's statement is below and can be viewed here:

"Panorama's response to Fibroaction and FMA UK

Two organisations representing sufferers of fibromyalgia syndrome have objected to how it was represented in Monday's programme, The Trauma Industry.

The film referred to it simply as a psychological condition, which is inaccurate. While some in the legal profession regard it as a controversial diagnosis - and it is listed under psychiatric disorders in the Judicial Studies Board Guidelines, the NHS terms it a physical condition which causes pain to sufferers.

Fibroaction and FMA UK say the syndrome should be termed a neurological-related condition or a "condition, with an increasing body of evidence to show that it is a Central Nervous System related disorder".

The programme questioned whether sufferers of PTSD and other conditions that are difficult to test for should sue for compensation and included an example of a fraudulent claim by someone claiming to have fibromyalgia syndrome.

However, it was not the programme makers intention to imply that sufferers of any such condition are not genuine and apologise if any distress was caused to anyone in pain. "

Shaping the Future of Care Together Green Paper threatens AA and DLA benefits

Wed, 26 Aug 2009 12:00:00 +0100

A Government Green Paper Shaping the Future of Care Together was presented to Parliament by the Secretary of State for Health on 14 July 2009. This Green Paper proposes a number of changes to the way care in the UK is funded and managed, including the possibility of scrapping disability benefits, such as Attendance Allowance (AA) and possibly also Disability Living Allowance (DLA), and giving the money to social services for distribution in personal budgets instead.

The consultation period for the Green Paper ends on 13 November 2009.

These changes could mean that many people with Fibromyalgia Syndrome were worse off, as how the money from personal budgets was used would have to be agreed with relevant officials, such as a social worker. The money would not be yours to spend as you see fit, as is currently the case with DLA. Many people use DLA to pay for basics such as food, rent or heating, or to use it for private treatments or nutritional supplements. All of these costs can be necessary but hard to meet financially if you are disabled with Fibro or another condition. However, they are not considered to be "care".

You can download the Green Paper and Supporting documents here. The relevant section of the full Green Paper is on page 102-103.

You can respond to the consultation online, by email or by post. Full details on how to do so are available here.

The organisation BenefitsandWork.co.uk is highlighting the potential issues from the Green paper.

You can view BenefitsandWork.co.uk's FAQ on the issue and sign up to their campaign here.

FibroAction will be consulting with MPs and considering our response. The situation is complicated by the fact that MPs are currently on summer recess, when they work in their constituencies, so it is not possible to organise, for example, an APPG meeting to discuss the issue. MPs return to Westminster in October.

Volunteer to help FibroAction raise awareness of Fibromyalgia Syndrome

Sun, 30 Aug 2009 12:00:00 +0100

FibroAction is looking for more people to join our team of volunteers!

FibroAction's team of volunteers are based all over the UK, with most people working from home.

We are interested in getting a range of volunteers with various skills, including both people with Fibro and people without the condition.

Volunteering for FibroAction can help you improve or maintain skills, improve your confidence and improve your knowledge of Fibro and how to control it. If you are bored at home, thinking of getting back to work or even thinking about changing careers, then volunteering for FibroAction may be of help.

We are looking for volunteers who can help on an ongoing basis, but this can be arranged to suit your free time and the constraints of your health. Whether you can commit to doing a certain number of hours a week or would prefer to have no time constraints, but to instead go from one small project to another, taking it at your pace, it's entirely up to you.

We are particularly interested in volunteers with an interest in or experience of:

Graphic design
Writing articles
Research
Fundraising
Politics
Event management
Administration/Organisation

However almost everyone will have something to offer, to help with the work we do to provide information and raise awareness of Fibromyalgia Syndrome (Fibro).

If you are interested in volunteering, please contact us with your name, a contact number and any ideas of what you might be interested in helping with. Someone will call you in the next few weeks to discuss how you may be able to help.

If you have contacted us before and didn't get a response, please do contact us again - we're working to better our organisation of our team of volunteers.

UK Fibromyalgia Syndrome Awareness Week

Wed, 02 Sep 2009 12:00:00 +0100

September 7-13th is UK Fibromyalgia Syndrome Awareness Week. Will you be doing anything to help raise awareness?

The UK Awareness Week was started some years ago by FMA UK as an alternative to the International Awareness Day in May and now numerous support groups around the UK use it as a focus for awareness raising efforts.

Some simple ways to raise awareness:

If your local hospital, surgery or clinic would like flyers on Fibro, contact us.

Download fact sheets from the About Fibro section of the website to print out and give to your doctor.

Buy a FibroAction or Fibro Sucks! t-shirt, bag or badge and wear it with pride! Click here to go to FibroAction's Spreadshirt store for merchandise.

Call your local paper or radio station and ask if they would like to do a piece on you, your local support group, an event you may have organised or just on the fact that it is the awareness week.

Make an appointment with your MP or meet them at a constituency event and ask if they will support efforts to raise awareness of Fibro in Parliament by joining the APPG (All Party Parliamentary Group) on Fibromyalgia.

Make an effort to tell people about your Fibro.

September newsletter now online

Wed, 02 Sep 2009 12:00:00 +0100

The September edition of the FibroAction e-newsletter is now available online. We are continuing to work on the IT upgrade necessary to ensure the security of the e-newsletter. Hopefully "normal service" will be resumed next month! Thanks for all your support.

Click here to view the e-newsletter online

West Berkshire Neurological Alliance extends time limit for pain survey

Thu, 03 Sep 2009 12:00:00 +0100

The West Berkshire Neurological Alliance (WBNA), of which FibroAction is a member, are carrying out a survey of pain and pain management experiences from people in their local PCT area.

The results of the survey may be used to campaign for better services in pain management. At the WBNA conference, Brains, Pains & Gains in July, FibroAction founder and WBNA Executive Committee Member, Lindsey Middlemiss, presented preliminary findings from the survey. Following this event, there has been significant levels of interest in the survey from Berkshire West NHS officials, but also from Department of Health officials. The WBNA therefore decided the extend the survey to enable more people to take part.

To take part in the survey, you must live or work in the Berkshire West NHS districts of Reading, Wokingham and West Berkshire and experience pain, either acute/temporary pain that is expected to resolve or chronic pain.

Click Here to take survey

New advice on over the counter analgesics containing codeine

Thu, 01 Oct 2009 12:00:00 +0100

The Medicines and Healthcare products Regulatory Agency (MHRA) last month announced new advice on over-the-counter (OTC) medicines containing codeine and dihydrocodeine (DHC) to minimise the risk of overuse and addiction.

This follows recent advice from the government’s scientific advisory body, the Commission on Human Medicines (CHM).

The package of measures include clear and prominently positioned warnings on the label and patient information leaflet (PIL) about the risk of addiction, and the importance of not taking these medicines for longer than three days.

The revised guidance on the use of these products will focus on treating moderate pain not relieved by simple painkillers such as paracetamol and ibuprofen. There will also be updated controls on advertising to ensure the new warnings are clearly presented.

Large packs of effervescent codeine containing products will no longer be sold in the pharmacy but will be available on prescription, which further strengthens the voluntary action taken by manufacturers in 2005 on pack size reduction. All packs containing up to 32 tablets remain available for sale through a pharmacy.

MHRA Director of Vigilance and Risk Management of Medicines, Dr June Raine said that taken in the correct manner and for the right purposes, codeine and DHC are very effective and acceptably safe medicines.

“However, these products can be addictive and we are taking action to tackle this risk,” she said.

“The MHRA is ensuring that people have clear information on codeine containing medicines on what they are to be used for and how to minimise the risk of addiction.

“Anyone who has concerns should speak to their pharmacist or a doctor.”

The MHRA’s action is being taken in parallel with the Department of Health’s review of policy on addiction to prescription and OTC medicines.

Charity Times Awards 2009

Thu, 01 Oct 2009 12:00:00 +0100

FibroAction was short-listed as Best New Charity at the Charity Times Awards 2009, but unfortunately we did not win on the night, losing out to Live Life then Give Life, a charity founded by two young multiple organ transplant recipients to raise awareness of the need for organ donation.

Thanks go to Charity Times Awards 2009 sponsor I C Office Solutions who sponsored tickets to the gala dinner to enable FibroAction to have a presence there.

To see the complete shortlist and winners list, please click here.

Government refuses to rule out axing DLA

Fri, 16 Oct 2009 12:00:00 +0100

A senior government minister has confirmed to the House of Lords that axing DLA has definitely not been ruled out, under proposals suggested in the government green paper Shaping the Future of Care Together .

This is despite care minister Phil Hope MP assuring a reporter at the Labour Party conference in September that DLA is not under threat by the care green paper, saying:

""DLA is not under threat and people can be very happy"."

However, the Government failed to then confirm this. Judging by subsequent events, Phil Hope's statement now appears to have been either a slip by a minister who was unaware of his own Government's plans or an attempt to get positive party conference coverage by giving assurances the Government was not going to back.

In a debate in the House of Lords on Tuesday 13 October, veteran disability campaigner, Lord Ashley of Stoke asked which disability benefits the government are ‘considering integrating into the wider social care budget in England’.

Lord McKenzie of Luton, parliamentary under-secretary of state for the Department of Work and Pensions (DWP), replied:

"At this stage, we do not want to rule out any options and so are considering all disability benefits."

Later on in the debate, Lord Low of Dalston asked for clarification, specifically referring to Phil Hope's statement, saying:

"...given the reported statement by the Minister for Care Services that disability living allowance is not under threat, can the Minister confirm that neither component of the disability living allowance, whether paid to present or future recipients over as well as under 65, is being considered as a possible source of funding for social care?"

Lord McKenzie then repeated the Government position, contradicting Phil Hope, replying:

"My Lords, as I said in answer to the first Question, currently no particular benefit is ruled out of consideration. We are conscious of the fact that DLA is overwhelmingly used by people who are under 65, and obviously care needs are overwhelmingly for people who are older."

To see a transcript of the most relevant section of the Lords debate, click here. To view the full transcript on the health debate on Hansard, click here.

Warning over unlicensed herbal valium

Wed, 28 Oct 2009 12:00:00 +0000

The Medicines and Healthcare products Regulatory Agency (MHRA) this month issued a press release warning people of the dangers of taking unlicensed herbal medicines containing aconite.

Aconite has recently been portrayed in the media as ‘herbal valium’, however, it is actually an extremely poisonous plant that is toxic to the heart.

It is also known as monkshood and herbal products containing this ingredient could be fatal or cause serious illness if consumed.

The MHRA has received two reports of suspected adverse reactions to aconite, one where a patient suffered kidney problems and another where the person was hospitalised after suffering dizziness and paresthesia.

MHRA Head of Herbal Policy, Richard Woodfield, said it was vital people did not confuse herbal medicines and homeopathic ones:

“Registered homeopathic products that contain aconite are considered acceptably safe as the active ingredient, aconite, is sufficiently diluted.

Herbal medicines are made from plants and so can have a very significant effect on the body. In certain cases, such as with aconite, the medicine can be extremely potent.

This is a classic case where ‘natural’ does not mean ‘safe’."

Mr Woodfield said recent media attention focused on a celebrity who allegedly took a product containing aconite to calm wedding day nerves.

“With unlicensed herbal medicines, people need to be aware that the standards vary widely and can be poor. However, an increasing range of herbal medicines made to assured standards are available on the UK market.”

Registered and licensed herbal medicines can be identified by the traditional herbal registration (THR) or the product licence (PL) number on the label.

Registered homeopathic products can also be identified by checking the label which should say ‘Homeopathic medicinal product without approved therapeutic indications’, as well as a homeopathic registration number prefixed with the letters HR.

Any side effects to herbal and homeopathic products can be reported to the MHRA via the Yellow Card Scheme http://yellowcard.mhra.gov.uk/.

DLA saved for some

Tue, 27 Oct 2009 12:00:00 +0000

Health secretary Andy Burnham MP has said that he has ‘heard the concerns and worries about disability living allowance’.

He has announced that:

“I can state categorically that we have now ruled out any suggestion that DLA for under-65s will be brought into the new National Care Service.”

However, Attendance Allowance (AA) and DLA being provided for anyone over-65 are still under threat with proposals in the Government's Green Paper on reforming social care.

Although a claim for DLA has to be made before you are 65, if you are awarded it on an indefinite basis, you will currently continue to receive it after 65. The current propsals mean that this could now stop as soon as you reach your sixty-fifth birthday.

It was made clear by Mr Burnham that there will be no transitional protection of existing awards for current claimants. Instead, ‘an equivalent level of support' will be provided by your local authority.

However, this does not take into account that currently DLA can be spent as needed and not just on social care. Many people use it to fund private treatments such as ongoing physiotherapy that reduce their need for social care.

The petition asking the Prime Minister to recognise the vital support that Attendance Allowance (AA) and Disability Living Allowance (DLA) provide to disabled people, and to ensure that these benefits are secured and are not removed as part of any future reform of the social care system in England, now has nearly twnety thousand signatures attached to it.

Click here to sign the petition.

You can download the Green Paper and Supporting documents here. The relevant section of the full Green Paper is on page 102-103.

You can respond to the consultation online, by email or by post. Full details on how to do so are available here.

The organisation BenefitsandWork.co.uk is highlighting the potential issues from the Green paper. You can view BenefitsandWork.co.uk's FAQ on the issue and sign up to their campaign here.

New Campaign for Yellow Card Scheme

Fri, 20 Nov 2009 12:00:00 +0000

The Medicines and Healthcare products Regulatory Agency (MHRA) have launched a new, targeted campaign to increase public awareness of the Yellow Card Scheme.

The Yellow Card Scheme is the UK scheme for the reporting of side effects of medicines. Further information on the Yellow Card Scheme is available on the MHRA website here.

Patient reporting of side effects to the Yellow Card Scheme was officially launched in 2008 and patients have been shown to make a valuable contribution. We are keen to further encourage patients, parents and carers to report side effects using the scheme. All reports are monitored for potential safety issues, so increased reporting to the scheme helps the MHRA protect public health.

The Medicines and Healthcare products Regulatory Agency (MHRA) is the government agency which is responsible for ensuring that medicines and medical devices work, and are acceptably safe.

Yellow Card leaflets have been distributed to GP surgeries and pharmacies across the UK. This is supported by poster displays and the information video below, which is encouraging reporting to the scheme abd is being shown in a number of GP surgery waiting rooms.

June Raine, Director of Vigilance and Risk Management of Medicines said:

“It is vitally important that we continue to raise awareness of the Yellow Card Scheme amongst the public and encourage reporting of side effects. We hope this new, targeted campaign will increase patient and public engagement, and we look forward to seeing the results translated into more effective medicines safety systems.”

Patient, parents and carers are all encouraged to report adverse drug reactions using the Yellow Card Scheme website www.yellowcard.gov.uk, by completing a Yellow Card leaflet, or telephoning freephone 0808 100 3352.

Dangers of buying illegal medications online highlighted

Thu, 19 Nov 2009 12:00:00 +0000

The Medicines and Healthcare products Regulatory Agency (MHRA) has announced that an international week of action targeting the online sale of counterfeit and illicit medicines has highlighted the dangers of buying such medicines online.

Due to an ever-increasing number of websites supplying dangerous and illegal medicines, INTERPOL and the World Health Organisation’s (WHO) International Medical Products Anti-Counterfeiting Taskforce (IMPACT) have this week co-ordinated 24 countries to launch Operation Pangea II.

National medicines regulators, police and customs have extensively collaborated in this global campaign. The MHRA is the government agency responsible for ensuring that medicines and medical devices work, and are acceptably safe.

The operation focused on the three principle components of an illegal website, the Internet Service Provider (ISP), payment systems and the delivery service.

Global awareness campaigns are planned to make sure patients realise that purchasing medicines from unregulated websites significantly increases the risks of obtaining counterfeit, sub-standard and dangerous products.

In the United Kingdom, enforcement officers from the Medicines and Healthcare products Regulatory Agency (MHRA) raided suspected premises in London, Chelmsford, Romford, Bristol, Brighton, Stoke-on-Trent, Leicester and Shrewsbury. Three arrests were made, six websites have been closed down and £300,000 worth of illicit medicines were seized, as well as quantities of controlled drugs.

The types of medicines the MHRA found included those for erectile dysfunction, hair loss, contraception, weight loss, pain relief, asthma, local anaesthesia and steroids.

MHRA Head of Enforcement, Mick Deats, said that what often looked like a professional online pharmacy would turn out to be an illicit website selling fake or illegal medication.

"This week we have recovered a range of different medicines that were being supplied with no prescription and stored in unacceptable conditions by persons unqualified to dispense medicines. ...

These websites often look like the real deal, but if they don’t carry the green cross logo of the Royal Pharmaceutical Society of Great Britain (RPSGB) and have a ‘bricks and mortar’ address, then they are often dealing illegally.

The dangers of purchasing medicines from unregulated websites are that you just don’t know what you are taking. The dosages could be either too high or too low, contain no pharmaceutical ingredient or a totally different ingredient to that stated. Illegal suppliers have no quality control or standards to abide by and people who purchase medicine from these sources will never know where the tablets they are putting in their mouths have actually originated or what they contain.

Mr Deats went on to add that:

“If customers could see the filthy conditions in which some of these medicines were being transported, stored and handled, they wouldn’t touch them.”

If you feel that your medicine may be counterfeit, contact the MHRA’s dedicated 24 hour anti-counterfeiting hotline on 020 7084 2701 or by email to counterfeit@mhra.gsi.gov.uk.

Disability Benefits update

Mon, 23 Nov 2009 12:00:00 +0000

Following the furore over a suggestion in the Government Green Paper, Shaping the Future of Care Together, that Attendance Allowance (AA) and Disability Living Allowance (DLA) should be scrapped to pay for care reforms, ministers finally confirmed last month that DLA for those people of working age would not be scrapped.

You can read more on this decision here.

However, AA and DLA for the over-65s are still under threat. The consultation period for the Green Paper has now closed, but campaigning carries on.

The Mail Online reported last week that a disabled Labour MP is leading a backbench rebellion against Ministers' plans to scrap benefits for needy pensioners. Read more here.

Tory health spokesman Andrew Lansley said he would keep the two allowances if the Conservatives win the general election next year.

The Conservatives are currently running a petition in support of keeping the benefits in place. Click here for more information on this petition.

A petition on the Number10.gov.uk website, submitted by Peter Hand of Mencap, calling on the Prime Minister to recognise the vital support that Attendance Allowance (AA) and Disability Living Allowance (DLA) provide to disabled people, and to ensure that these benefits are secured and are not removed as part of any future reform of the social care system in England, now has over 22,000 signatures. However, this petition will end on 7 December 2009. Click here to sign this petition (British citizens & residents only).

A similar petition on the same website calls for the same thing in Scotland. Click here to sign this petition (British citizens & residents only).

For further information, see:

Help us by Sending E Cards this Christmas

Mon, 23 Nov 2009 12:00:00 +0000

Save money, save paper and help support FibroAction by sending e-cards for Christmas.

FibroAction are one of the charities that can benefit from EveryClick's 'Christmas? Considerate Done' campaign, running for its second year.

It’s really simple: you select a card, add a personal message including an optional image and video clip, make a donation and then book a day to have Santa deliver it to all your friends nearer Christmas. Being able to add a YouTube clip means you can even send video messages to friends & family around the globe!

The minimum donation is only £5 and for that you can send a Christmas card to up to 100 recipients.

To take advantage of this scheme, go to EveryClick's Christmas page here.

Help make Christmas 2009 be about spending less and giving more.

Help 2 million plus people in the UK affected by Fibromyalgia Syndrome benefit from your Christmas Cards by selecting FibroAction as the charity recipient of your donation.

Update on the FibroAction e newsletter

Mon, 23 Nov 2009 12:00:00 +0000

Following our problems earlier this year with the e-newsletter, we're still working on improving the system for getting them sent out. If you have registered for the e-newsletter, you should have received one at the beginning of November.

Some people have contacted us saying they haven't received that e-newsletter. If you didn't get an e-newsletter from us at the beginning of November, please contact us on info@fibroaction.org and let us know.

One change from the old system is that the e-newsletter is now sent in the format as being from "On Behalf of Lindsey at FibroAction [newsletter@fibroaction.org]" so some of you may need to re-set email filter settings.

View the latest e-newsletter online here. Please note that we're still working on the layout with the new system!

If you haven't registered for the e-newsletter and would like to get monthly updates sent to your email account, click on the link on the right to register. Please note that although you need to register a password, the log-in option is currently only for website admins.

UK Fibromyalgia Support Group Directory updated

Fri, 11 Dec 2009 12:00:00 +0000

The FibroAction Support Group Directory has recently been updated. Check out the Support Group Directory on the Patient Section or click the link on the right.

FibroAction are happy to help publicise any local support group for people with Fibro through publishing their details in the Suport group Directory.

If you run a support group for people with Fibromyalgia Syndrome (Fibro) and would like your group's details to be publicised here, please contact the admin team. Include the group's name, the area it covers, a website address if you have one, at least one method of contact and any details (such as of meetings) that you would like listed. We only ask that, if the group has a website with a links page, a link to FibroAction's website is added to that page.

If your local group is not listed, why not make the group leader aware of this free publicity opportunity for the group?

FibroAction takes no responsibility for any actions arising from the listing of contact details and we remind group leaders to be careful about what contact information they supply. FibroAction will endeavor to ensure that contact details are not supplied without the knowledge of the group contact, but this cannot be guaranteed. If, at any time, you would like your details to be edited or removed, please contact the web admin.

FibroAction does not control these support groups and takes no responsibility for their actions. However, any concerns should be raised with the web admin.

Support the Prescription Promise Campaign

Mon, 14 Dec 2009 12:00:00 +0000

The Prescription Promise Campaign is calling on Gordon Brown to keep the promise he made in his speech to Labour Party Conference 2008 to abolish prescription charges for people with all long-term conditions.

As of the 1st April 2009, people with cancer no longer have to pay for prescriptions. This is wonderful news, but many more people in need are still waiting. There is plenty of evidence that many people with long-term conditions currently struggle to afford their prescriptions, and often choose not to fill prescriptions because of the cost.

The Prescription Promise Campaign is currently officially supported by 20 UK charities. FibroAction supports the principles of the campaign and we are waiting to hear whether our public support of the campaign would help at this stage.

The Prescription Promise Campaign is calling on the Government to set a clear timetable for implementing free prescriptions for everyone with a long-term condition before the next election.

You can lend your support to the campaign by emailing your MP and signing The Prescription Promise Campaign petition. To do so, or to get more information, please see the Prescription Promise Campaign website here.

FibroAction supports the UK Fibromyalgia Alliance

Mon, 11 Jan 2010 12:00:00 +0000

FibroAction are proud to support the UK Fibromyalgia Alliance, a new intiative proposed by UK Fibromyalgia, who produce FaMily magazine.

The UK Fibromyalgia community is currently quite complicated. There are two national charities: FibroAction & FMA UK. There is UK Fibromyalgia, producing FaMily magazine. Then there are also over 100 dedicated local & regional Fibromyalgia support groups, working tirelessly to help sufferers and raise awareness. These support groups are all independent charities, whether they are registered charities or not and whether they are working with a national charity, the NHS or completely independently. There are also a number of other commercial organisations, such as the UK FM/ME Clinics, who have been working to raise awareness of Fibro.

UK Fibromyalgia have proposed the set-up of a UK Fibromyalgia Alliance, which they and we hope can become the rallying point for all the various individuals, groups and charities in the UK Fibromyalgia community. If a majority of the UK Fibromyalgia community make a strong commitment to a common set of aims, then politicians and the medical community will have to sit up and take notice of the agenda we set.

The UK Fibromyalgia Alliance will be made up of member organisations, all with their own structure and tasks, but who agree to work together to promote the aims and objectives of the Alliance, within a transparent and accountable structure.

As part of this, The UK Fibromyalgia Alliance Manifesto has been proposed, which is detailed below.

The UK Fibromyalgia Alliance Manifesto

Aims

That all people with Fibromyalgia in the UK should have access to the mechanisms needed for fast and accurate diagnosis.
That all people with Fibromyalgia in the UK should have access to effective, evidence based treatments.
That all people affected by Fibromyalgia in the UK should not be subject to discrimination because of the condition, including discrimination by employers, medical professionals or the state.

Objectives

To create an Advisory Board for the UK Fibromyalgia Alliance made up of Advisory Board Members, advisers and experts from the member organisations, so that all these experts can benefit the whole UK cause and community.
To develop an evidence-based integrated care pathway (ICP) for the diagnosis and treatment of Fibromyalgia in the UK. This would involve organising a task force of Alliance members and Advisory Board members to oversee the development of the ICP. (An ICP is a multidisciplinary outline of anticipated care, placed in an appropriate timeframe, to help a patient with fibromyalgia move progressively through a clinical experience to positive outcomes. Within the NHS, ICPs are published in a consistent form through the Map of Medicine, which all NHS staff will have access to. They will also be available through the NHS CHOICES site.)
To work to get the Fibromyalgia ICP accepted by the UK medical profession and the NHS. This would probably be through a combination of publicity, events, use of current contacts and working with the All Party Political Group (APPG) for Fibromyalgia.
To develop basic evidence-based information on Fibromyalgia that is agreed by the Advisory Board of the UK Fibromyalgia Alliance, that can be published by the Alliance members jointly and that can be used by any advisory members as the basis for their own information packs (i.e. a consensus on Fibromyalgia that can be used so we are all "singing from the same hymn sheet").
To work to get regional Fibromyalgia multidisciplinary clinics set-up across the UK.

If you run a UK Fibro charity, support group or related commercial organisation and your organisation agrees with the principles below, then you can also sign up to the UK Fibromyalgia Alliance through the UKFibromyalgia.com website here.

Principles of the agreement when signing up to the UK Fibromyalgia Alliance
(note: "We" refers to your charity or organisation):

We agree with the Aims of the UK Fibromyalgia Alliance.
As a member of the UK Fibromyalgia Alliance, we will work to promote the Objectives of the UK Fibromyalgia Alliance.
We agree to share relevant, appropriate and non-confidential information with the rest of the UK Fibromyalgia Alliance in order to promote the Objectives of the UK Fibromyalgia Alliance and work towards the Aims of the UK Fibromyalgia Alliance.

Sorry for the recent downtime

Sun, 31 Jan 2010 12:00:00 +0000

Please accept our apologies for the FibroAction website being offline recently.

Our hosting company were having major issues with their servers and the downtime was out of our control. Hopefully everything is now back to normal and we won't have such a major issue again.

We're currently working on a number of projects to improve the information we provide and hope to be able to bring the updated website format to you soon.

Support Group Directory updated

Wed, 10 Feb 2010 12:00:00 +0000

The FibroAction website Support Group Directory has recently been updated.

Details have been added for three more groups:

Lincoln Fibro Support

Fibromyalgia Support Group (North Kent)

Preston & district Fibromyalgia Support Group

Here at FibroAction we're looking to upgrade the Support group Directory over the next few months, so if you run a local support group in the UK for people with Fibro, then now is a good time to get your group details listed on the FibroAction website.

Any UK group can have their details listed in the Support Group Directory - it's just a free publicity opportunity to make it easier for Fibro sufferers to find your group.

FibroAction does not control these support groups and takes no responsibility for their actions. However, any concerns should be raised with the admin team.

UK Fibromyalgia Alliance update

Wed, 10 Feb 2010 12:00:00 +0000

FibroAction, Fibromyalgia Association UK and UK Fibromyalgia agreed at a recent meeting that, although we are all in support of the principles behind the proposed Fibromyalgia Alliance, the practicalities of this initiative would have caused too many logistical issues for all the organisations involved.

However it has focussed a renewed ambition to work more closely, in harmony, towards the aims as laid out by the proposed Alliance.

A consensus to produce an Integrated Care Pathway (ICP) collaboratively and to promote this through the channels of all three organisations, with a view to it being widely adopted, was agreed as the best way forward.

An ICP is a multidisciplinary outline of anticipated care, placed in an appropriate timeframe, to help a patient with fibromyalgia move progressively through a clinical experience to positive outcomes. Within the NHS, ICPs are published in a consistent form through the Map of Medicine, which all NHS staff will have access to. They will also be available through the NHS CHOICES site.

Once we have an approved ICP all three organisations will work to get the Fibromyalgia ICP accepted by the UK medical profession and the NHS. This will probably be through a combination of PCT trials, publicity, events, use of current contacts and the use of the All Party Political Group for Fibromyalgia.

We will update you on the progress of this initiative when we can.

Government Petitions Needing Your Signature

Tue, 16 Feb 2010 12:00:00 +0000

Here is a round-up of the petitions on the Number10.gov.uk website that relate to Fibro that need your "signature".

Any petition that has reached more than 500 signatures by the time it closes will receive a response from the Government, sent by email to all who signed that petition.

You must be a British citizen or resident to sign any of these petitions.

Chronic pain and chronic fatigue cause incapacity for work

Petition deadline: 02 August 2010

Petition: We the undersigned petition the Prime Minister to recognise specifically that chronic pain and chronic fatigue cause incapacity for work.

Details: Sufferers of chronic fatigue syndrome, fibromyalgia, hypermobility syndrome, and other such chronic conditions can go through periods when their ability to function is severely impaired. The current rules for claiming ESA do not recognise the validity of myalgia, arthralgia, malaise or severe sleep disruption. This causes distress and humiliation for sufferers who are often forced to appeal decisions, or to work when unfit thereby causing themselves further health problems. We ask that this family of incapacities be correctly recognised so that people who experience chronic pain and chronic fatigue can claim ESA when they need it.

Click here to sign this petition.

Fibro training for A&E consultants

Petition deadline: 03 February 2011

Petition: We the undersigned petition the Prime Minister to Demand Fibromyalgia flare up training for all A+E consultants in the U.K.

Details: A petition to make sure that all accident and emergency consultants are given better training on Fibromyalgia, and the symptoms a major flare up creates.

We also demand that consultants stop forcibly discharging us from our hospital beds; just because the illness shows on no tests, does not mean the patient is making it up.

If we are brought in to an A+E department, we expect those looking after us to know about our illness.

We do not expect to have to educate the medical profession ourselves, when we're at our sickest and feeling awful.

We do not expect to have to fight for basic care and treatment, just because a consultant has never heard of Fibromyalgia and would rather dismiss us, than seek further knowledge.

Click here to sign this petition.

Make the DLA application process fairer for Invisible Conditions

Petition deadline: 04 February 2011

Petition: We the undersigned petition the Prime Minister to Make The D.L.A. Application and Decision Process Fairer To People With Invisible Illnesses.

Details: Fibromyalgia and Hypermobility Syndrome are amoungst many invisible illnesses that claimants of D.L.A. suffer from. They are as disabling as other conditions, but we are made to go through extrordinary steps to ensure we are 'belived' and they it does not ensure we will be awarded it.

Click here to sign this petition.

Petition to get more disabled models in ad campaigns

Tue, 16 Feb 2010 12:00:00 +0000

Another petition you may be interested in signing...

We the undersigned petition high street retailers in the UK
to involve disabled models in their advertising campaigns

In the special editions of How to Look Good Naked … With a Difference, presenter Gok Wan joined forces with Naked Ambassadors Natasha Wood and Nikki Fox in a mission to convince retailers that disability can sell fashion.

To show your support in getting disabled models to feature in high street advertising, then please take a couple of moments to sign the petition.

Click here to sign the petition

Support Group Directory updated again

Wed, 24 Feb 2010 12:00:00 +0000

The FibroAction website Support Group Directory has recently been updated again.

Details have been added for another new group:

Fibro Support Group N.Surrey

The Fibro Support Group North Surrey is run by Lynn, who some of you may aleady know from her awareness work in London, Surrey & Sussex.

Any UK group can have their details listed in the Support Group Directory - it's just a free publicity opportunity to make it easier for Fibro sufferers to find your group.

FibroAction does not control these support groups and takes no responsibility for their actions. However, any concerns should be raised with the admin team.

Compiling a List of NHS Fibro Clinics

Sun, 28 Feb 2010 12:00:00 +0000

Do you attend an NHS clinic or course for Fibro patients? If so, we'd like to know about it!

There are quite a few NHS Fibro clinics around the UK, often set up by rheumatology departments in NHS hospitals, but we rarely get to hear about many of them. Here at FibroAction we're trying to compile a list of all Fibro specific services available on the NHS. However, there isn't a central database of Fibro specific NHS services and getting information from individual PCTs can be a slow process. So if you know of a NHS service - e.g. a clinic or course - specifically for Fibro patients, that is not listed below, or if you spot anything incorrect in the list below, please contact us with details.

Please note that, at this stage, we're only looking for information on clinics or other services (e.g. condition management courses) that are just for Fibro patients, not general services such as a department that treats Fibro patients mixed in with other patients.

NHS Fibro-specific clinics & services:

Guy's Hospital, London

Run by Prof John Davies.

Poole Hospital

Run by Dr Selwyn Richards

Salisbury Hospital

Run by Dr Richard Smith. Physio, OT & hydrotherapy available in department.

Bolton Hospital

Run by Dr K Adams. Multi-disciplinary course available for Fibro sufferers.

A Common problem with Registering for the E Newletter

Tue, 02 Mar 2010 12:00:00 +0000

We've had quite a few people contact us recently saying they got an error when trying to register for the e-newsletter, only for us to find that it was because they had already registered and were trying to register again with the same email address.

We realise that the error message doesn't make it clear what the problem is and we hope to get this changed as soon as possible.

If you try to register for the free e-newsletter and get an error, please contact us and let us know which email address you were trying to sign up with. We can then check whether you're already registered.

Response to Dr Crippen Guardian article mentioning Fibromyalgia

Thu, 04 Mar 2010 12:00:00 +0000

On Tuesday March 2nd, the "Dr Crippen" column in the Guardian newspaper had an article about the prevalence of whiplash injuries being diagnosed, in which derogatory comments were made about Fibromyalgia Syndrome (Fibro).

The insinuation of the article was that Fibro is not a real condition or a valid diagnosis.

Click here to read the article on guardian.co.uk.

"Dr Crippen" is the pseudonym of an anonymous and often controversial blogger, supposedly a GP principle with 20 years experience working somewhere north of London, just outside the M25. As well as writing the column in the Guardian, he blogs at the NHS Blog Doctor weblog, where his even less restrained articles are usually rants about the NHS and patients.

On Tuesday, he posted about the article in the Guardian, under the title Fibromyalgia : "whatever that is". In this post, he made it clear that his views on Fibro are bigoted and outdated and, having complained about "bad medical science" in the Guardian article, proceeded to "cherry-pick" a selection of Google search results on Fibro to back up his views.

Using a selection of internet search engine results from varying sources, such as Wikipedia, is never a good way to get reputable, evidence based medical information, something that one would hope a GP would be aware of.

In his blog article, "Dr Crippen" refers to the NHS Choices website information on Fibro and then proceeds to completely ignore what is said there, presumably because the evidence based information doesn't agree with his outdated views.

Fibromyalgia Syndrome is most definitely a real condition and this is not something that is genuinely debated by educated and up-to-date healthcare professionals. The increased pain response or hyperalgesia that characterises Fibro has been demonstrated using fMRI* (functional MRI) and this is just one of the many evidence based pieces of information to support our view.

If you would like to complain about the Guardian article, complaints can be sent to the office of the Guardian readers' editor at reader@guardian.co.uk.

FibroAction have sent a complaint and we are waiting on the Guardian to respond (or not) before we escalate this matter to the Press Complaints Commission. The more complaints that are made formally, the more weight our complaint will have so please email in a response rather than just commenting on the website.

* Reference: Gracely RH, Clauw DJ et al. Functional magnetic resonance imaging evidence of augmented pain processing in fibromyalgia. Arthritis Rheum. 2002 May;46(5):1333-43.

Newsletter issue

Fri, 05 Mar 2010 12:00:00 +0000

We are aware that the recent FibroAction e-newsletter was sent multiple times to some recipients. Please accept our apologies for this. We are aware of the situation, but are still trying to work out how it happened.

If you would like to unsubscribe from the e-newsletter service, email newsletter@fibroaction.org with the Subject "Unsubscribe".

Tesco School Vouchers required by Portsmouth Rheumatology Department

Fri, 12 Mar 2010 12:00:00 +0000

The Department of Rheumatology - Portsmouth Hospitals, is once again collecting the Tesco School Vouchers.

Any Tesco School Vouchers can be sent to:

Rheumatology Department, Queen Alexandra Hospital, Cosham, P06 3LY

The equipment obtained with 2010 Tesco School Vouchers will be spilt between the Hydrotherapy Children's group and the Rheumatology Children's Clinic at the Queen Alexandra Hospital, Cosham. The Trust is eligible to collect as a recognised school.

Directory of UK Fibro Support Groups updated

Wed, 07 Apr 2010 12:00:00 +0100

The FibroAction website Support Group Directory has recently been updated again.

Details have been added for another two groups:

Fal Fibro Friends - Support Group

Newcastle Fibromyalgia Support Group

Fal Fibro Friends - Support Group is a new group run by Ali Rowe, whose next meeting is on Monday 12th April. The Newcastle Fibromyalgia Support Group is an existing group, run by Angela Campbell, which meets on the 3rd Monday of each month. Click on the group names above to see further details for each group.

Group details have also been updated for:

Bexhill and Hastings Fibro Support Group

Any UK group can have their details listed in the Support Group Directory - it's just a free publicity opportunity to make it easier for Fibro sufferers to find your group.

FibroAction does not control these support groups and takes no responsibility for their actions. However, any concerns should be raised with the admin team.

International Internet Study seeking participants

Wed, 05 May 2010 12:00:00 +0100

Participants are being sought to take part in a large-scale international internet questionnaire study about understanding and lack of understanding for rheumatic diseases, including Fibro.

Researchers at Universities in Utrecht (The Netherlands), Detroit (USA), Coïmbra (Portugal), Marburg (Germany), Ghent (Belgium), and Barcelona and Jaén (Spain) are collaborating on the study, which is funded by the Dutch Arthritis Association.

Patients with rheumatic diseases report that lack of understanding for their illness is an important issue in their lives. Researchers call this lack of understanding by others ‘invalidation’. The aim of this study is to examine how much understanding and invalidation by others is experienced by people who have a rheumatic disease. The researchers also want to examine the consequences of this understanding or invalidation and compare this between different countries.

Patients with any rheumatic disease can fill out a questionnaire on the internet in their own language, which will take approximately 20 minutes. Participation will be voluntary and anonymous

If you want more information or want to participate, please click on the following hyperlink: www.lackofunderstanding.nl.

May update for the Directory of UK Fibro Support Groups

Fri, 28 May 2010 12:00:00 +0100

The FibroAction website Support Group Directory has recently been updated again.

Details have been added for another two groups:

Aberdeen and District Fibromyalgia Support Group

Walsall ME Link

Walsall ME Link has been running as an ME Support Group since 2000 but as so many members have a Fibro diagnosis as well, the group now offers support for Fibro sufferers as well. Click on the group names above to see further details for each group.

Group details have also been updated for:

Blackburn Fibromyalgia Support Group

Havering and Redbridge Fibromyalgia Support Group

The Blackburn Fibromyalgia Support Group has a new telephone number and a new group leader, Yvonne Booth. The Havering and Redbridge Fibromyalgia Support Group has updated their contact details.

Here at FibroAction we're working on upgrading the Support group Directory, so if you run a local support group in the UK for people with Fibro, then now is a good time to get your group details listed on the FibroAction website.

Any UK group can have their details listed in the Support Group Directory - it's just a free publicity opportunity to make it easier for Fibro sufferers to find your group.

FibroAction does not control these support groups and takes no responsibility for their actions. However, any concerns should be raised with the admin team.

FibroAction News Feed

WEGO Health do Interview with FibroAction Founder

FibroAction Website Gets Upgraded

Tried and Tested project launches today

The Tried and Tested launch event is today!

Website downtime

Website issues

PolkaDotGals Calendar available to preorder

FibroActions Useful Links Directory updated

Professional Advisory Board Launch

Website Move Completed

Fibro at the EULAR Congress of Rheumatology

The recent EULAR 2008 Annual European COngress of Rheumatology took place from 11th to 14th June in Paris and 93 abstracts discussing Fibromyalgia Syndrome were submitted to the congress.

Software upgrade tonight

FibroAction helps NHS Direct update Fibro topic

USA FDA seeks warning for anticonvulsants

Updated Fibro Info on NHS professionals website

Doctors to get yearly appraisals

Let Us Know Your Awareness Week Plans

The FollyPogs Dinner & Fun Evening

An Open Meeting in West Berkshire

Pharmaceutical firms give mixed reports

Dr Jacob Teitelbaum to visit the UK

No Medications UK Licensed for Fibro

Dr Jacob Teitelbaum joins FibroAction advisory body

IASP 12th World Congress on Pain

Daniel Clauw MD and Patrick Wood MD join FibroAction PAB

FibroAction joins Chronic Pain Policy Coalition

Raising Awareness in September

Fibromyalgia Syndrome declaration for European Parliament

Fibromyalgia Syndrome on BBC Radio 4 Womans Hour

FibroAction launches an About Fibro Patient Leaflet

Temporary Website disruption possible on Saturday evening

NHS Choices updates information on Fibromyalgia Syndrome

FibroAction Becomes a Registered Charity

Patients with long term conditions to get free prescriptions in future

GPs under pressure to not use branded medications

Patricia Fennell joins FibroAction Professional Advisory Board

US Expert Andrew Holman giving UK Lecture this Christmas

Severe blow for millions of Fibro sufferers as European Medicines Agency rejects first drug approval

Andrew Holman Lecture to be held at Guys Hospital

ENFA Petition Needs Your Support

Patient UK updates their Fibromyalgia Syndrome information

FibroAction teams up with the Charities Aid Foundation to enable online donations

Why donate through CAF?

Penalties Scrapped for NHS Top Up Fees

Fibromyalgia Syndrome related E Petition

Government and Drugs industry cut deal

Send e Cards this Christmas

Merry Christmas

Merry Christmas to all of you from all of us at FibroAction!

A holiday message from FibroAction founder Lindsey Middlemiss

FDA Approval for Savella

Important Safety Information from the press release

FibroAction Website Survey

Dr Andrew J Holman MD joins the FibroAction PAB

IBS Patient Expert Heather Van Vorous joins FibroAction PAB

VIP Football Tickets up for auction

Looking for help with awareness campaigns

New Number 10 E Petition for Fibromyalgia Syndrome sufferers

Interested in Journalism or PR

Telegraph article

APPG on Fibromyalgia Syndrome Meeting

Sponsored walk for Fibromyalgia Syndrome

2009 Fibromyalgia Syndrome Awareness Campaign 1 in 50

Lyrica refused European Marketing Approval

Response from FibroAction to Lyrica EU Refusal

Press release 23 April 2009

Second blow for millions of Fibromyalgia Syndrome sufferers as European Medicines Agency rejects another drug

UK Parliament Westminster Hall debate on Fibromyalgia Syndrome to take place

Update

Follow the Parliamentary debate on Fibromyalgia Syndrome on Twitter

First UK Parliament Debate on Fibromyalgia Syndrome

Application for a UK NICE Guideline for Fibromyalgia Syndrome is Unsuccessful

Report on the first UK Parliament Debate on Fibromyalgia Syndrome

Report by Lindsey Middlemiss

Key points

Quotes

Further resources

Launch of the Fibro Support Group Guys London