General Articles
A list of articles involving FM
Well done Rugby FM Support Group
The Rugby Fibromyalgia Support Group held an Awareness Day event at the Benn Hall, Rugby on 12th May. It was the first ‘open day’ they had run and they invited 20 other voluntary and support groups to open stalls at the event, including ME, Mind, Pension Service, Guidepost Trust, Rugby Credit Union, Rugby Disability Group, to name but a few. They had a large turn out and were very busy with many prospective new members turning up for information and staying to chat for quite a while. The FM table couldn’t really be missed with it’s brightly coloured yellow with black polka dot table cloth on.
Special mentions and thanks go to the following for their help and support: Mary Clarke, Jackie Hart (Joint chairs) Sue and Richard Drage, Carol, Terri and Eric Stevenson, Pat Webb and Marcia Phillpott. Photos were taken by Maurice Clarke.
International Fibromyalgia Awareness Day 12th May 2009
A year has passed and what has changed?
In Brussels, the Written Declaration on Fibromyalgia won a majority of votes. This asks for all member states to recognise fibromyalgia and ensure diagnosis and treatment is available. It also states that research funding should be awarded for fibromyalgia. It is likely to be some time before we see the results of this as it is a slow process.
In the UK, the recommendation for guidelines for the treatment of fibromyalgia were not considered to be a priority by the National Institute of Clinical Excellence (NICE). This rejection by NICE which is independent from the government is a blow for UK fibromyalgia sufferers.
The annual report from the Government’s Chief Medical Officer Liam Donaldson, which included a whole section on pain and especially chronic pain, gave hope that at least this area of fibromyalgia might be given some attention but it is only part of the range of symptoms and cannot be treated in isolation.
Read more: International Fibromyalgia Awareness Day 12th May 2009
Medway Group's Fibromyalgia Awareness And Drop-in Day On 9th May
On 9th May Fibromyalgia Support Group (Medway) held an Awareness and Drop-in Day at Greenacre School in Walderslade in celebration of International Fibromyalgia Awareness Day on 12th May. We were extremely pleased that the event was so well attended with well over 100 people coming through the door.
It was good to see a large number of our present members, and it was great that all the publicity that had been done for this event paid dividends, in that it brought along a large number of people who had Fibromyalgia but who had not previously heard of this support group.
Read more: Medway Group's Fibromyalgia Awareness And Drop-in Day On 9th May
Survey of Five European Countries: prevalence of fibromyalgia.
It was also submitted to all outpatients at 8 participating hospitals. Those who met one of 2 criteria either:
- having a 4 pain criteria or
- 4 pain and 2 fatigue
Read more: Survey of Five European Countries: prevalence of fibromyalgia.
International Fibromyalgia Awareness Day 12th May 2009
This is the day we can at least get the word fibromyalgia to as many people as possible. To start with the easiest, “don’t have to leave the comfort of my own home” methods, what about a call to your favourite radio station asking for a request to all those with fibromyalgia. It could be something soothing and relaxing to help chill out those in pain or something lively to cheer people up. If you feel up to it you could even ask to be interviewed to tell your story. The local press can also offer the opportunity to tell your tale. They prefer to have a personal story rather than the dry facts and may even send a photographer.
For those of you who are more adventurous how about requesting posters (available free from the office) to be displayed in local shops, clinics, hospitals, libraries etc.? Some people arrange to have a display in busy places like shopping centres and hospitals and give out flyers (also available free from the office). If you do this, don’t overdo it. Limit your time and make sure you have somewhere to sit down, so that you are not going to be too exhausted afterwards. If you want to really make a splash we have t-shirts, bunting, balloons and spotty material available from here, but there is a charge for these. This sort of display can also make a good photo opportunity for the media. You could also join in with using our "fibro duck" in your awareness activities.
Read more: International Fibromyalgia Awareness Day 12th May 2009
John Hopkins: New Option for Fibromyalgia
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
National Pain Care Policy Act of 2009
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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