#blog award, #health, #Spoonie, Back Pain, CHRONIC PAIN, FIBROMYALGIA, FMA UK, HEALTH

FMA UK FIGHTING FOR FREEDOM FROM FIBROMYALGIA…

FMA UK is a charity fighting for freedom from fibromyalgia. If you are looking for a helpline, forum, support group, booklets and the latest news on fibromyalgia then this charity has it all.

 

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 Association provides medical information for professionals and operates a national helpline.

They 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. They hope that will be a statement of the past.

They want 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.

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 they say would not be able to provide the level of service they do. On the 1st July 2015 FMA UK and Fibroaction merged to produce Fibromyalgia Action UK.

Fibro Exercise DVD

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

Some of the services or resources that they offer are:

  • 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. their 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 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
  • They represent fibromyalgia sufferers at various levels and to various organisations.
  • Organise and take part in European Activities through ENFA
  • Provide medical information for sufferers and medical professionals through its Medical Advisory Board of experts. Their latest booklets include “Young People with Fibromyalgia” and their 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. Normally involves an event at Westmister and the Fibromyalgia APPG.

FMA UK (Fibromyalgia Association)

 

#blog award, #health, #Spoonie, CHRONIC PAIN, FIBROMYALGIA, HEALTH

FIVE GREAT SITES THAT ARE HELPING RAISE AWARENESS OF FIBROMYALGIA…

The Fibro Blogger Directory is a directory of people who blog about Fibromyalgia. Set up by Fibro sufferer Lee Good who says ‘Blogging is a powerful tool and by connecting we can be a stronger voice’.

The aim of the directory is to –

  • Connect fibro bloggers
  • Help raise awareness of Fibromyalgia
  • Provide information to the world wide web and other media about fibro bloggers
  • Offer Directory members support

They promote your sites on Tumblr which has an image from your blog and a link back to your blog for Tumblr visitors to see.
They also promote on Twitter where you can instantly connect to what’s happening in fibro land, as well as follow friends, experts, and get breaking news on fibro and chronic pain.

They have a busy Facebook page which features different bloggers daily.

Fibro Friday is a chance for you to join and help spread Fibromyalgia Awareness. Fibro Friday is a weekly link up by and for people with Fibromyalgia — A place to share and help others understand more about fibromyalgia.

There is also a store where you can buy Fibro books on Amazon 

Head down and join the list of Fibro bloggers and make some great friends in the process. Lee Good works extremely hard to help raise awareness of Fibromyalgia and to connect other fibro sufferers to join the community.

 

FMA UKFMA UK offers many awareness resources

Fibromyalgia Association UK 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.  FMA UK 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.

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.

Head to the FMAUK website to find out more information about the Fibromyalgia Awareness Week and to see how you can help. They say that although awareness is year-long International awareness day is May 12th in 2018, while Awareness Week is the 2nd September to the 9th so you can start planning for your events now.

 

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Fibromyalgia is not just seen in women, men suffer it as well. FibroMen is a website that has been set up to raise awareness of the syndrome and providing information to help men, their families, partners and carers with diagnosis, treatment and coming to terms with the condition.

FibroMen was established by a long-term “FibroMan” who failed to get treatment at the start of his symptoms, who put it down to over-exertion and ended up in hospital on a few occasions and who now has life-long auto-immune conditions on top of fibro – the message is simple “Get Checked Out!” – if it’s fibromyalgia you probably won’t be cured, but you’ll learn how to cope and live with it. FibroMen exists to raise public awareness of fibromyalgia in men and to inform, support and empower sufferers, their families and carers”.

They want you to raise awareness by either writing on their blog  or tell your story for other fellow sufferers to read. You can also find them on their twitter site.

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UK Fibromyalgia was formed in October 2000 and ever since has worked with all groups and all charities to provide an independent overview for Britain’s Fibromyalgia community.

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They have a magazine which is printed monthly and have 21,000 UK Forum Members, 91,000 Facebook likes, and 85 support groups.

Their aims are –

  • That all people with Fibromyalgia in the UK should have access to the mechanisms needed for fast and accurate diagnosis.
  • That all people with Fibromyalgia in the UK should have access to effective, evidence based treatments.
  • That all people affected by Fibromyalgia in the UK should not be subject to discrimination because of the condition, including discrimination by employers, medical professionals or the state.

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Finally, a support group which I only wrote about yesterday Fibro Flare Awareness Group and magazine…

Flare magazine was established in May 2014.  6 months later the support group was founded which then became charity registered in December 2016. All those involved are volunteers who have FM/ME/CFS.

They are committed to doing all they are able to change the misconceptions and stigma associated with FM/ME/CF (SEID), as well as raising funds to enable bio medical research to be carried out to ascertain the cause of these diseases which would hopefully lead to a cure.

This month’s magazine includes articles on ‘How we are treated by our GP’s, ME updates, Benefits of Tumeric, Recipes, May 12th Fibro Awareness Day’, an online shop and lots more.

To mark Fibro Awareness Day the Flare Group meet at the Blackpool Tower for their annual Global Light up the Night where the Tower will once again light up in purple with a blue heart to represent both FM and Me.

If you would like to get involved, visit or donate to any of their events or fundraisers please contact them by clicking here, you can also message them through their social network pages and groups.