‘Murky Disease” – FMA UK reponds to AP story

From the Fibromyalgia News Desk of Jeanne Hambleton

The Fibromyalgia Association UK
responding to the controversial ‘Murky Disease’ article published by Associated Press on February 9, 2009, wrote:

Many charities and nonprofit groups around the world have been struggling to raise awareness of fibromyalgia for over 20 years. Even before it was given that name, people were concerned that the symptoms were causing great distress and hardship to people who were inexplicitly in pain and suffering from profound bouts of fatigue.

One thing people with fibromyalgia are certain about is that the symptoms they feel are real and cannot be dismissed as “a murky illness” as this article suggests. Fibromyalgia was given validity long before the drug companies started their trials to find out if drugs they had developed could alleviate the symptoms. Most of the research into this disease would not have happened if it were not for drug companies supplying funding.

The organisations fighting for swift diagnosis and treatment for fibromyalgia have had very few allies. Certainly the medical services from government level to the doctors and nurses have not initiated plans for improving the situation. Long before the drugs approved in the USA were mooted as possibly bringing relief for people with fibromyalgia we had been seeking funding to help with the campaign for improvement. So this has not been pharma led, but in some cases pharma enabled.

In our case we had funding to print postcards for a campaign that we initiated to bring fibromyalgia to the attention of MPs and MEPs. These were offered to individuals who wanted their representatives to be more aware about the problems they are facing. It made it easier for people to invite their MPs to a coffee morning and the MEPs to a presentation for the recently passed European Written Declaration on Fibromyalgia.

We do not have any approved drugs in the UK or even Europe for the treatment of fibromyalgia. Indeed there are not even any official guidelines for its diagnosis and treatment. We have enquiries from the public and medical professionals asking us for information because they find this is not available when they are faced with a fibromyalgia patient.

We fundraise to be able to afford to print and distribute information and are very grateful to one sponsor who at present prints our general information booklet. This means we do not have make a charge for sending this out to people, which is especially appreciated by those who may have lost their income because of fibromyalgia. We would still publish and send this out without sponsorship: it would mean working harder at raising money instead of putting our energies into raising awareness or cutting back on other publications and support we provide.

If the drug companies did not help raise awareness of the disease and possible interventions, many more people would be left in pain, with a wretched quality of life. Fibromyalgia is not considered a life threatening illness, but we know of people that preferred to end their life rather than go on suffering the pain and fatigue for the rest of their lives. Would we rather that happened than funding was supplied from pharmaceutical companies to help?

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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