FMA UK - UK's National charity for fibromyalgia

Largest Genetic study of fibromylagia ever!

Thank you to all those who have signed up for this study. The 2000 target has now been reached. CALLING PEOPLE WITH FIBROMYALGIA WE NEED YOUR HELP TO COMPLETE THE LARGEST GENETIC STUDY OF FIBROMYLAGIA EVER!

The study can be completed at your local GP practice!

We need to reach our target of 2000 people taking part in this study and we are 60% of the way there! With YOUR help we will have enough people in the study to allow scientists to tease apart the genetic factors contributing to the development of fibromyalgia.

We have spoken to many people with fibromyalgia and have heard their frustration at the poor treatment options available to those living with chronic pain. The team working on this study includes scientists and doctors convinced that we will be able to devise better therapies only with improved understanding of the biology of pain.

Thank you to the 1200 of you who have already enrolled in the fibromyalgia study – your support and effort is invaluable. If you have already received a blood donation kit we should be grateful if you would kindly arrange this by the end of April 2013. If you have received a blood donation kit but are unable to take part in the study, please return the kit to FREEPOST address: Admin Team, Department of Twin Research, St Thomas’ Hospital, FREEPOST LON7776, London, SE1 7YY (no stamp required)

Sad News of the passing of Christine Craggs-Hinton

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We have recently learned of the sad news that Christine Craggs-Hinton has passed away at the age of 60 at Tenerife’s Hospiten Rambla. Christine leaves a husband, David, sons Mark, James and Mathew, her mother, Mabel and a brother, Glenn.

Born in Bradford, and lived there for most of her life, Christine was forced to take early retirement from the Inland Revenue in 1992 because of her health after contracting fibromyalgia. Involved with the West Yorkshire fibromyalgia support group including writing its newsletter, she went on to write a self-help and information book on fibromyalgia, based on her experiences, and found a publisher in 1999. It was published in 2000 and became the first British book on the subject. To date, it has sold over 50,000 copies. She has since written several books on fibromyalgia with her latest book just being published.

a fantastic cycle ride to raise awareness and funds for Fibromyalgia

Jignesh Sutar completed a fantastic cycle ride to raise awareness and funds for Fibromyalgia. We would like to publicly thank him for this tremendous effort and for all those people that sponsored him and made this such a success raising £1373.71 in total.

He has written this account of his challenge.

First 4 days were great, I was cycling in beautiful sunshine, temperatures reaching above 30+. Each day I was questioning why I was carrying the additional weight of full body thermals, skiing gloves & a balaclava(!) in my backpack. So eventually on day 5 I ended up parceling 2.5kg of my gear to Santiago. And then, what happened on day 5 evening? It rained for the first time and the temperature just dropped!

All the warm clothes I parceled away were everything I desperately needed now! I was doing 100+ km almost each day now and made it a point to continue to do so simply to be reunited with my gear again! I ended up reaching Santiago on day 8 of the 14 days I gave myself which then gave me the opportunity to go to Finisterre and Muxia also. The days of cycling after reaching Santiago to do the Finisterre-Muxia Way were cycling in torrential down pour, where waterproofs were no longer waterproofs. The last day of cycling, I ended up having to cycle with a balaclava and in deep fog, so somewhat a contrast to my first day!

Shared Decision Making

Shared Decision Making (SDM) is a process in which patients choice is encouraged by their health professional to participate in selecting their appropriate health treatments or care management options. This site explains how this should work and helps the patient get the most form their health provider.

http://www.advancingqualityalliance.nhs.uk/sdm

Improvement through exercise (especially in males) in Gloucester

Please see the article below for a study relating to excercise and fibromyalgia:

The aim of this project is to see how exercise can help fibromyalgia. In particular we are interested in male sufferers. Research to date suggests that there is a real lack of evidence based interventions especially using strength and conditioning exercises and in male subjects.

A large group of males and females is needed.

We are also seeking self-funded students wishing to research for a MSc/MPhil/PhD in the area of FM/ME/Exercise Biochemistry

https://sites.google.com/site/fibromyalgiaexerciseresearch/

Solicitors win record breaking settlement for fibromyalgia sufferer

“Brian Barr Solicitors have won a record breaking £1.5milion settlement for a fibromyalgia sufferer. Further details will follow.”

FMA UK Head office to move to Scotland

We are pleased to announce that the Head Office of FMA UK will be moving from Cradley Heath to Scotland during early December 2012 with an aim to be fully operational once more after the Christmas holidays. We have the opportunity at this time to benefit from sharing high quality office space and facilities with some companies that share our belief in the Fibromyalgia cause.

After careful consideration of all options open to the trustees it was decided that for efficient use of funding and effective use of human resources, this was the best option.

In Paisley, FMA UK will benefit from the office having a trustee being able to oversee its operation once more but it was also the benefit of the volunteer pool that is available in the local area and we have already had some positive feedback from local volunteer organisations and the local fibromyalgia support group.

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