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About FMA UK

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Category: Documentation
Published on Monday, 05 September 2005 00:00
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Fibromyalgia Action UK is a registered charity run primarily by unpaid volunteers. The majority of volunteers are also fibromyalgia sufferers who work extremely hard, despite their condition, in order to forward the cause of fibromyalgia.  FMA UK was established in order to provide information and support to sufferers and their families. In addition, the charity provides medical information for professionals and operates a national helpline.

We aim to encourage NHS and other funding sources for new research projects. At present there is very little research being carried out in the UK and sufferers are told there is no cure. We hope that will be a statement of the past.

Mission Statement

 

To improve the lives of people with fibromyalgia by increasing awareness of the condition throughout the UK and elsewhere, and improve the awareness of, and access to treatments for fibromyalgia.

 

Our History

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 150 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. On the 1st July 2015 FMA UK and Fibroaction merged to produce Fibromyalgia Action UK. 

What does FMA UK do

FMA UK operates as a signpost to information and resource for people who are affected by fibromyalgia. From our initial beginnings we have seen the range of services and resources increase. What we can offer is closely tied to the level of donations we receive and other funding sources.

Below is a short list of some of the services or resources that we offer:

  • National Helplines on fibromyalgia and benefits issues
  • An online support forum that is available 24/7 with office bearers of the charity being available to help e.g. our benefits advisor helps with benefits queries and sends information regularly.
  • UK wide system of support groups
  • Only fibro charity that helps create and provides resources to support support groups at creation and through their operation
  • Providing the insurance cover required for registered fibromyalgia support groups to operate
  • Email support system where Regional Coordinators answer questions and refer people to local support
  • Signposting to legal support
  • Awareness event support including awareness items including posters, leaflets, tshirts and many more items with many being offered free or at cost
  • Fundraising support
  • Sending of free patient information packs from the office
  • Sending medical professional booklets to medical professionals from the charity on behalf of patients.
  • Trustees and RCs attending conferences, support groups, medical professional and governmental meetings.
  • Supporting regional and national conferences
  • We represent fibromyalgia sufferers at various levels and to various organisations. A recent example of this was our response to the Panorama programme.
  • Organise and take part in European Activities through ENFA
  • Provide medical information for sufferers and medical professionals through its Medical Advisory Board of experts. Our latest booklets include “Young People with Fibromyalgia” and our updated "The Fibromyalgic Pregnancy and Beyond" booklet.
  • Update information in other organisation's publications e.g. ARC and BUPA
  • Provide information and interviewees to media
  • Provide participants for surveys and research projects
  • FMA UK sets the date for the UK fibromyalgia awareness week and organises events with groups to raise awareness of our condition
  • Organise events for International Awareness day on May 12th. 

About 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 the 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".

There are treatments available which can alleviate some of the symptoms but the majority of these are in the private sector and as most sufferers are forced into early retirement, or cannot work at all, the cost of such treatment is prohibitive. More info on fibromyalgia can be found here.

Charity Registration Details

Our Charity Registration number is:  1042582
Our HMRC Reference number is: available on request
Company Registration number is: SC492045

Name & Registered Office:
FIBROMYALGIA ACTION UK LTD
12 SEEDHILL ROAD 
3006 MILE END MILL 
PAISLEY 
RENFREWSHIRE 
SCOTLAND 
PA1 1JS 

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