News

Meeting Times and Dates for 2011

New meeting times are on the meetings page.

Veronica Clixby is our contact. You can reach her by sending to this email address (note you must copy it by hand for spam-proofing reasons):

Press Release

Wednesday 8th December 2011

News from Fibromyalgia Association UK Royal College of GPs announce chronic pain as clinical priority FMA UK is a member of the Chronic Pain Policy Coalition (CPPC), which was formed to highlight the need for a policy change in the way pain, is considered throughout the NHS. The following announcement from CPPC is welcomed, as it should lead to a change in the way people with pain are treated in all areas of health. We realize it is not the complete answer for Fibromyalgia patients, but it will be a step forward. In September 2009, Dr. Martin Johnson, CPPC executive committee member and chair of the Royal College of General Practitioner’s Pain Committee member and chair of the Royal College, submitted a proposal, fully supported by the CPPC and the All-Party Group on Chronic Pain, to the Royal College of General Practitioners (RCGP) to make pain one of the College’s clinical priorities for 2011-2013. We are pleased to announce that the proposal was successful and that chronic pain will become one of the four RCGP clinical priorities from 2011-2013. This decision will raise the profile of pain management in primary care. This is an important step in ensuring that GPs are well educated and informed about identifying and managing patients with persistent pain in the community and are aware of the importance of working collaboratively with secondary care to optimize patient outcomes by jointly developing referral guidelines and patient care pathways. The Royal College of GPs will now begin the process of developing a remit for the 3-year programme of work, building on the clinical priority proposal, which includes prioritizing pain into the Quality and Outcomes Framework. In autumn 2010, they will recruit a Clinical Champion for chronic pain to prepare for the start date of 1`st January 2011. The CPPC will be actively supporting this exciting piece of work.

Drugs News

Lyrica (pregablin), Cymbalta (duloxetine) and Savella (milnacipran), have not been approved for FM in the UK, because they did not demonstrate adequate efficacy in the management of pain. But it goes a lot deeper than that, with a clear lack of understanding of the complexity of FM from the European regulatory agencies, and even worse, a worry about the cost of providing the drug versus the benefit to the patient and reducing the longer term costs to society. Some doctors in the UK are licenced to prescribed these drugs, see your GP if you want more information. Be careful about ordering drugs over the Internet because some of these companies may not have rigorous hygiene controls when preparing them. News from the FDA about Xyrem. PALTO ALTO, Calif., Oct 11, 2010/PRNewswire via COMTEX/ -- Jazz Pharmaceuticals, Inc. (Nasdaq: JAZZ) announced today that the U>S> Food and Drug Administration (FDA) has sent the company a complete response letter (CRL) regarding the company’s New Drug Application (NDA) for JZP-6 (sodium oxybate, Xyrem) for the treatment of fibromyalgia. The CRL states that the FDA cannot approve the NDA in its present form. In the letter, the FDA discusses a number of topics, including the need for additional clinical studies, the appropriate patient population, methods for ensuring safe use, and the proposed REMS, concentration and trade name for the product.

Want to know more about benefits online?

Benefits and Work have a great wealth of information on everything you wish to know, type in www.ukfibromyalgia.com and scroll down to claiming benefits there are many free fact sheets to download.

www.turn2us.org.uk is benefits site that can help you with information and filling in forms.

www.adviceguide.org.uk is the Citizens Advice Bureau help site or you could go to your local Citizens Advice Bureau they will help with advice and filling in forms.

Sheffield Advice Website: www.advicesheffield.org.uk

Multiple Sclerosis Therapy Centre (S. York’s) Ltd

The charity is self funded and has been running for 25 years. Helen gave me their leaflet that was handed to her at a supermarket, she noticed the Oxygen Therapy as one of the therapies taking place at the centre. I rang the centre to find out the details and was invited to go along and see for myself. I was given a guided tour and was very impressed the centre is everything we fibomites could wish for. Our group has been given permission to use the premises the membership is ₤12 yearly. For more information ring me 01909 565037 or contact the MS Centre 01709 367784.

There is a mini gym with three very good machines perfect for MS sufferers donation of ₤2 towards running costs they are suitable for and we all could easily use.

The oxygen Therapy room has a large tank for 6 people to sit in; it is actually one of those chambers that deep sea divers use to get them breathing properly. One session costs ₤8 but if you have 2 in one week the second is ₤5 otherwise it is ₤8 each week. I have been looking at the oxygen treatment machine that you can use at home costs nearly ₤3,000 to buy. You can have a lot of treatment for that.

For therapies it is an appointment system, the cost is ₤18 - ₤20 which is nearly half price that the Sheffield City Centre therapists charge plus you get longer time with them. Physiotherapy, reflexology, aromatherapy are just three on offer plus more.

Anyone can drop in at any time for a chat and a cuppa.

Anyone with disabilities not able to use there own or public transport the Door to Door Community Transport charge reasonable rates as I will do because there are infrequent buses. Address Bradbury House, 25 St. Mary’s Drive, Catcliffe, Rotherham S60 5TN. The number X15 bus from Sheffield runs hourly and drops you off at the end of St. Mary’s Drive. Ring me if you want to know more. The Centre telephone number 01709 367784 web site www.mstherapysyorks.co.uk

Press Release

Wednesday, 28 January 2009

The European Medicines Agency (EMEA) are to have a consultation with a delegation from the European Network of Fibromyalgia Associations (ENFA) in an attempt to understand the need for medical treatments for fibromyalgia in Europe.

Brussels – Following an invitation by the EMEA, the European Network of Fibromyalgia Associations (ENFA) has agreed to attend a consultation meeting with EMEA, where ENFA representatives will share their knowledge and experiences related to the disease of Fibromyalgia that some 14 million Europeans are suffering from. One of the biggest challenges that the patients have been facing is the lack of officially recognized medical treatment options in the European Union whereas there are three drugs in the United States of America approved by the Food and Drug Administration: Cymbalta from Eli Lilly, Lyrica from Pfizer and recently authorised Savella from Forest & Cypress.

The European Declaration 69/2008 on Fibromyalgia that has been recently adopted by the European Parliament, symbolizing the awareness raised around Fibromyalgia, calls for actions on specific issues from European Institutions to improve healthcare surrounding the disease, e.g. investment in research and provision of better diagnosis and treatment. In addition, the European Health Commissioner Ms. Vassiliou’s remarks (E-6262/08EN) on the treatment of Fibromyalgia demonstrates encouraging willingness of the European Commission to address various concerns laid out in the Declaration on Fibromyalgia.

"We hope that this new drive on Fibromyalgia awareness will bring the end to the impasse of medical treatment for Fibromyalgia patients in the EU", said Mr. Robert Boelhouwer, President of ENFA.

Fibromyalgia is a complex disease with a variety of symptoms in addition to the defining symptom - chronic widespread pain. It is estimated that 14 million people in Europe suffer from fibromyalgia and the condition is more prevalent with women (87%). Fibromyalgia imposes large economic burdens on society as well as on affected individuals. The debilitating symptoms often result in lost work days, lost income and disability payments. Due to lack of awareness, on average patients in Europe see 3-4 physicians and take multiple medications over the course of several years before they receive a diagnosis of Fibromyalgia.

Mr. Boelhouwer said, "Increasing awareness of Fibromyalgia among healthcare professionals and patients will bring enormous benefits to patients, healthcare providers and the society in general by managing the burden of the disease." he continues, "Having this in mind, ENFA welcomes the proactive role that both the European Parliament and the European Commission have taken up in raising the awareness of Fibromyalgia."

Contact: European Network of Fibromyalgia Associations (ENFA)
Mr. Robert Boelhouwer
President of ENFA
ENFA is a network of patient association and support groups working in close consultation with the national association in the relevant country.

Our joint missions are to conquer the myths and misunderstandings around Fibromyalgia. The network will help collectively push forward the boundaries which currently exist in understanding, experiencing and treatment of Fibromyalgia. Our main goal is to see fibromyalgia receiving the recognition it deserves across Europe as an illness in its own right.

(Could fibromyalgia sufferers please sign as many petitions as possible addresses can be found in the Winter Newsletter, online pm.gov http://petitions.uk contact-europe.eu and on the FMA UK web site
Your signed petition does make a big difference.

Medical Updates

Fibromyalgia No Longer an "Invisible" Disease
By: Drucilla Dyess
Published: Wednesday, 5 November 2008

The chronic disorder known as fibromyalgia is characterized by extensive muscle pain lasting for at least three months coupled with heavy fatigue. Other symptoms include problems with cognitive function and memory and concentration, as well as sleep disturbances and stiffness. The condition affects between two and four percent of the world's population with most of the victims being women.

Until now, fibromyalgia has been labeled the "invisible syndrome" as it could not be diagnosed through lab tests or X-rays. But a group of French researchers have recently detected abnormalities in the brains of those suffering from the condition.

Dr. Eric Guedj, the study's lead author and a researcher at Centre Hospitalier-Universitaire de la Timone in France explained, "We showed in our study that the functional abnormalities observed were mainly related to disability." Previously, researchers have suggested that the pain associated with fibromyalgia was actually the result of depression. However, Guedj said that the abnormalities found in the brain scans done during the study were unrelated to anxiety and depression levels.

The research included 20 women who had been diagnosed with fibromyalgia and 10 healthy women who were free of the condition, serving as a control group. The 30 women were asked to answer questionnaires regarding their levels of pain and disability, as well as levels of anxiety and depression. In addition, the research group performed brain imaging on the women known as single photon emission computed tomography (SPECT).

The brain scans revealed that the women with fibromyalgia had blood flow abnormalities or "brain perfusion" that the healthy women did not. It was also discovered that these abnormalities are directly connected to the intensity of symptoms and an increase in blood flow was found in the area of the brain that distinguishes pain severity.

Prior studies that included brain imaging have shown that the affected areas of the brain involve pain processing and emotional responses to pain. Dr. Guedj and colleagues believe that, as a result, the new findings indicate that fibromyalgia is a disorder of central pain processing in which pain sensations are heightened.

The National Fibromyalgia Association estimates that about 10 million Americans suffer from fibromyalgia. Although the cause of fibromyalgia is not known, it is believed that it may be linked to physical trauma. Treatments target improved function and pain relief.

According to Dr. Patrick Wood, senior medical adviser for the National Fibromyalgia Association, this new study supplies "further evidence of an objective difference between patients with fibromyalgia and those who don't have the disorder."

The researchers acknowledge that a major limitation of the study was the small number of participants. In addition, although fibromyalgia is usually assessed with general pain scales like the ones used in the study, they plan to discuss whether or not these scales are appropriate for use in this type of research.

The findings were published in the November issue of The Journal of Nuclear Medicine.