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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.