Fibromyalgia Action is a registered charity administered 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. Fibromyalgia Action was established in order to provide information and support to sufferers and their families. In addition, the Association provides medical information for professionals and operates a national helpline.
In order to raise awareness of Fibromyalgia, an All Party Parliamentary Group (APPG) has been set up to bring greater awareness and education of the illness and related problems associated with the condition. It also aims to encourage NHS and other funding 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.
Fibromyalgia Action 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:
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”.
- 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
- Access 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
- Fibromyalgia Action 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. Normally involves an event at Westmister and the the Fibromyalgia APPG.
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.
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