FIBROMYALGIA: FIRST STEP FORWARD IS EU RECOGNITION SAY MEPS

FROM THE DESK of Jeanne Hambleton – October 27 2008

Just imagine what would happen if the word ‘fibromyalgia’ was casually dropped into conversation. Chances are there would be a lot of blank faces staring back. So just think what its like for the 14 million people in the EU, whose condition, fibromyalgia, is at the moment not even recognised as a disease.

It is hoped by sufferers that this is all set to change, as Members of the European Parliament sign up to a petition for recognition of fibromyalgia across the European Union. Even though the World Health Organisation has formally recognised the condition – whose symptoms includes chronic musculoskeletal aches, pain and stiffness in addition to soft tissue tenderness, general fatigue and sleep disturbances – since 1992, fibromyalgia is not yet recognised at an EU level.

Euro-MP for the North East Fiona Hall warns that this lack of recognition not only hinders a formal diagnosis and treatment of the condition, but also limits research into the causes of the disease and new treatment methods.

Says Fiona,

“Recognising fibromyalgia as a disease is the first step towards making life that little bit easier for those suffering from the condition. A formal recognition would also provide comfort to those sufferers, who have for many years, been met with blank stares when trying to discuss the condition.

“Hand in hand with this, there is still little understanding of the disease in terms of both cure and effective treatment available at the moment. More research facilities are needed to try to determine the cause and effect of fibromyalgia and I am confident that putting a name to the disease would allow this to happen.

“A formal recognition of fibromyalgia could also make it easier for patients to apply for Disability Living Allowance. Holding a regular job is hard for people suffering from the condition. Fibromyalgia is a real disease and should be treated as such.”

UK sufferers such as Gemma Rouston, who was diagnosed in 2007, support the MEP’s actions and calls for more widespread understanding of the disease.

Gemma, who is membership secretary of the Liberal Democrat Disability Association (LDDA) said,

“It was such a relief to be told that I was not imagining things. However, I was not given any real idea of how to cope with the condition apart from taking painkillers and exercise.

“It is very difficult to cope with fibromyalgia; it varies everyday and every hour. I am in my early forties, and have to use a walking stick. I have two disabled children, who I am supposed to care for, but they look after me.

“Even if you get a formal diagnosis, the Department of Work and Pensions are reluctant to help out financially. Fibromyalgia makes it difficult to do any work on a regular basis. No employer will be willing to be as flexible as I need them to be, especially the way that things are at the moment.”

“Having fibromyalgia means that my family are restricted in what we do and where we go. I cannot really plan what I will do each day, even if it is just myself.”

Ends

Lucy Towers

Press Officer to Fiona Hall MEP
Regional Media Co-ordinator for the Liberal Democrats in the North East

55a Old Elvet
Durham
DH1 3HN
0191 383 2269 / 07776 256333
lucy@fionahallmep.co.uk

http://www.fionahall.org.uk

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About jeanne hambleton

Journalist-wordsmith, former reporter, columnist, film critic, editor, Town Clerk and then fibromite and eventer with 5 conferences done and dusted. Interested in all health and well being issues, passionate about research to find a cure and cause for fibromyalgia. Member LinkedIn. Worked for 4 years with FMA UK as Regional Coordinator for SW and SE,and Chair for FMS SAS the Sussex and Surrey FM umbrella charity and Chair Folly Pogs Fibromyalgia Research UK - finding funding for our "cause for a cure" and President and co ordinator of National FM Conferences. Just finished last national annual Fibromyalgia Conference Weekend. This was another success with speakers from the States . Next year's conference in Chichester Park Hotel, West Sussex, will be April 24/27 2015 and bookings are coming in from those who raved about the event every year. I am very busy but happy to produce articles for publication. News Editor of FMS Global News on line but a bit behind due to conference. A workaholic beyond redemption! The future - who knows? Open to offers with payment. Versatile and looking for a regular paid column - you call the tune and I will play the pipes.
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