International Fibromyalgia Awareness Day 12th May 2009

However, the new NHS Evidence website was mentioned by the Under Secretary.  When fibromyalgia is searched for, this has the European League Against Rheumatism (EULAR) guidelines that were sent to NICE as a beginning for official UK clinical guidance.  This is encouraging if medical professionals use this service.  This advocates a multidisciplinary approach for the treatment of fibromyalgia.  There are some centres around the country that use this but we need all PCTs to have the ability to refer patients with fibromyalgia to a multi-disciplinary team of medical professionals for appropriate treatment. It is unacceptable that these specialist clinics are not available on the NHS Choose and Book system thereby denying easy access to sufferers.

We hope this debate will have raised the profile of fibromyalgia but it has highlighted that there is still much more to do.  People in constant pain should have the right to effective treatment.  How can between 1.7 and 2.8 million people living with such a poor quality of life be treated so badly?

For Editors:

 

What is Fibromyalgia?
Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most. 

The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy – as if someone just “pulled the plug”.  Fibromyalgia is a common illness. In fact, it is as common as rheumatoid arthritis and can even be more painful. People with mild to moderate cases of fibromyalgia are usually able to live a normal life, given the appropriate treatment.  

If symptoms are severe, however, people may not be able to hold down a paying job or enjoy much of a social life. The name fibromyalgia is made up from “fibro” for fibrous tissues such as tendons and ligaments; “my” indicating muscles; and “algia” meaning pain. 

Fibromyalgia Association UK
Fibromyalgia Association UK was first established in 1992 to provide information to people with fibromyalgia.  In 1997 it began working also with the 40 support groups around the country providing free information leaflets and books for sale.  There are now over 120 support groups working with FMA UK and a network of regional coordinators who help set up new groups and arrange regional events such as meetings and conferences. The charity is mostly run by volunteers without whom we would not be able to provide the level of service we do.  

Currently we supply information through our website, monthly magazine and professional and patient booklets.  We have a national helpline for general enquiries about fibromyalgia and one specifically for benefit queries. We have also held national and regional conferences with international speakers for both people with fibromyalgia and medical professionals.

Our Medical Advisory Board is comprised of expert medical professionals in various disciplines who provide information for our publications and specific queries. The All Party Parliamentary Group on Fibromyalgia was formed in 2001 and holds regular meetings to inform MPs of the problems surrounding fibromyalgia and possible solutions.

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