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Paul Swanton doesn't have fibromyalgia but does have a friend with the condition. Amazed at the lack of awareness of the condition he decided to get up and do something about it. He's running his 3rd Flora Marathon this year and is using it to raise money for FMA UK.
Last year he managed an amazing 2hrs 48min 7 sec run and hopes to better it this year. He has set up a justgiving website for sponsorship so if you know anyone with a couple of spare pounds in their pocket who would like to give to a good cause please let them know that they can donate here.
We would like to thank Paul for his energetic help, he's running for all of us who can't run for ourselves.As I write this donations are already up to £415... nice one Paul.
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FMA UK receives support from GirlRacers |
 FMA UK is delighted to announce that girlracers have decided to support us and help us raise awareness of fibromyalgia. Their MD, Juli McIlmail, has been diagnosed with fibromyalgia so knows first hand the limitations this causes. “Girlracer is a fast paced company in the competitive motorsport environment where women thrive on the race track, pushing their bodies, physical strength and determination to the limits. The Girlracer Group of companies is run by a very slow paced woman who pushes her body, physical strength and determination to its limits in a very different way. My racers do it to win, I do it to live.”
I met with Julie and racing driver Jayne Snipe to talk about this exciting development and was invited to their stand at the Retro exhibition at the National Agricultural Centre, Stoneleigh. Although this event attracts far more males than females we met two women with fibromyalgia and one who treats several others through reiki.
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 On March 7th members of the European Network of Fibromyalgia Associations (ENFA) gathered in eight European city centres, while normal people were doing their usual Saturday shopping, to reveal their plight as suffering from fibromyalgia.
The theme was ‘Trapped in Pain’ and the women used nets to illustrate the confining pain of FM. This passive demonstration took place simultaneously in Paris, London, Amsterdam, Frankfurt, Brussels, Dublin, Milan, Lisbon and Madrid. Have a look at what they got up to.
It is ENFA's aim to continue to raise awareness of fibromyalgia at both a national and European level. You can help with this by signing the petition at ENFA's website.
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John Hopkins: New Option for Fibromyalgia |
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The FDA in America have already approved Lyrica (pregabalin) for the treatment of fibromyalgia, now they have turned their attention to gabapentin. Gabapentin (neurontin) is a similar type drug to Lyrica, used for epilepsy in higher doses, but one which works on nerve pain in lower doses.
A twelve week study which was published in Arthritis & Rheumatism (Volume 56, page 1336) has shown that gabapentin works well on fibromyalgia patients, sygnificantly reducing both pain and fatigue. In more than 50% of fibromyalgia patients their pain was reduced by at least 30%. The full article from John Hopkins can be seen here
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National Pain Care Policy Act of 2009 |
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Voices for Pain Are Heard in the US
The American Pain Foundation has succeeded in getting approval from the US House of Representative’s Energy and Commerce Committee for a National Pain Care Policy Act. This policy will help to combat pain by allowing the Pain Consortium at the National Institutes of Health in the US to expand their research into the cause and treatments of pain, pain care education and training for healthcare professionals, national public awareness in pain management and authorising an Institute of Medicine conference in pain management. This legislation will now move to the main government house and then the U.S. Senate.
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This month we focus on what people have been up to around the UK for fibromyalgia. Read about the successful launch of the Kettering fibromyalgia support group, the amazing marathon runner, Stephen Roach, who is hooked on marathons as a way of raising money for FMA UK and the crazy things that groups got up to over the Christmas period!
We also take a look a new government scheme called Caring with Confidence, which provides support to carers by offering them a free knowledge and skills based programme which can be accessed online, through self-study workbooks or via face-to-face group sessions.
With best wishes,
Kathy Longley (FMA UK Editor)(Subscribe to FaMily Magazine to get more of these articles)
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FMA UK response to AP article Feb 09 |
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Many charities and non-profit groups around the world have been struggling to raise awareness of fibromyalgia for over 20 years. Even before it was given that name, people were concerned that the symptoms were causing great distress and hardship to people who were inexplicitly in pain and suffering from profound bouts of fatigue.
One thing people with fibromyalgia are certain about is that the symptoms they feel are real and cannot be dismissed as "a murky illness" as this article suggests. Fibromyalgia was given validity long before the drug companies started their trials to find out if drugs they had developed could alleviate the symptoms. Most of the research into this disease would not have happened if it were not for drug companies supplying funding.
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