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FMA UK October 09 Newsletter

The Board of Trustees of Fibromyalgia Association UK have recognised the need to keep Regional Coordinators and members of local support groups updated with information about the work that they are undertaking on behalf of people with fibromyalgia and their carers.

This will take the form of a Newsletter which will be published twice a year and circulated to all local groups via their own Regional Coordinators. Below is an outline of what has been happening since the Group Leaders’ Meeting in May, 2009.

Board Of Trustees

Currently there are 5 trustees:

  • Pam Stewart MBE Chair
  • Des Quinn Vice Chair and Webmaster
  • Janet Horton Benefits Helpline
  • Roger Leadbeater Treasurer
  • Gerry Crossley National Helpline coordinator

Unfortunately, Betty Farron resigned in August due to ill health. Betty worked tirelessly at her role of funding and fund-raising, and we shall miss her input tremendously. The trustees thank her for all her hard work.

Fibromyalgia Media Coverage

BBC 1 Panorama Programme
FMA UK and many FM sufferers were incensed when Panorama (The Trauma Industry – 27th.July), used a fibromyalgia patient to illustrate benefit fraud, saying “…and like other new psychological disorders (Chronic Pain Syndrome, Somatoform Disorder, Fibromyalgia,) it’s almost impossible to disprove". The patient in question fraudulently claimed £8,000 in benefits. FMA UK penned a strong criticism to the BBC, who acknowledged their error and posted an apology on their website, but the programme was not edited in the BBC i-player, and no apology was broadcast. The statement from the BBC said:

“In response to representations made by FMA UK, FibroAction and numerous fibromyalgia sufferers the BBC propose to add a comment to the programme and on BBC I-player as follows:

Two organisations representing sufferers of fibromyalgia syndrome have objected to how it was represented in Monday's programme, The Trauma Industry.

The film referred to it simply as a psychological condition, which is inaccurate. While some in the legal profession regard it as a controversial diagnosis and it is listed under psychiatric disorders in the Judicial Studies Board Guidelines, the NHS terms it a physical condition which causes pain to sufferers.

Fibroaction and FMA UK say the syndrome should be termed a neurological-related condition or a "condition, with an increasing body of evidence to show that it is a Central Nervous System related disorder".

The programme questioned whether sufferers of Post Traumatic Stress Disorder (PTSD) and other conditions that are difficult to test for should sue for compensation and included an example of a fraudulent claim by someone claiming to have fibromyalgia syndrome.

However, it was not the programme makers intention to imply that sufferers of any such condition are not genuine and apologise if any distress was caused to anyone in pain. "

Daily Mail Article
FMA UK were contacted by the Daily Mail, asking if we could suggest a doctor they could interview for an article on fibromyalgia. We suggested they contact Dr. Tom Gilhoully. The article turned out to be a full page interview with Maria Roberts.

FMA UK Publications

Children's booklet
The Children’s information booklet has been a long term project, involving Kathy Longley and all the trustees, which has finally reached a conclusion. This is a booklet written for young persons with fibromyalgia, with a pullout section for parents and pages for teaching staff, and we think it will be popular and useful to young sufferers. The Office now has a stock of these and they will be distributed free of charge on request.

Medical Booklet for Medical Professionals
The Medical Booklet has been revised by the Medical Advisory Board, in consultation with the trustees, and is now almost ready to go to the printers. This booklet is distributed free, directly to medical practitioners on request. People with fibromyalgia can contact FMA UK office and request that a copy is sent to their own medical care team by supplying the name of the medical professional and their surgery details.

 

 

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