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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.
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Good and Bad news for sufferer's this week |
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The last week of April was a good news bad news week. First of all this was the week we learned that there was to be a Westminster Hall Debate on Fibromyalgia. Something we had been working towards with our supportive MPs for some time. And then we got the bad news. NICE finally replied after 22 months to our application to have guidelines issued for the treatment of fibromyalgia.
Your topic has now been assessed against the NICE topic selection criteria and has not been prioritised as a topic to be considered further for the NICE work programme.
This was doubling disappointing as Sir Liam Donaldson (Chief Medical Officer) in his annual report had said, Up to 5% of the population are affected by chronic widespread pain of unknown cause, including diagnoses such as fibromyalgia.
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Westminster Hall Debate on Fibromyalgia |
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 FMA UK is pleased to announce a Westminster Hall Debate, on Fibromyalgia at the House of Commons on Tuesday 5th May 2009 (9.30 - 11.00am)
We have learned today that Rob Wilson, MP for Reading East and Chair of the All Party Parliamentary Group on Fibromyalgia, has managed to secure a Westminster Hall Debate on Fibromyalgia.
This is fantastic news and we are grateful to Rob and fellow MPs for offering to take our concerns and raise awareness of fibromyalgia.
If your MP has been supportive to our cause in the past, please let them know about the debate and ask them to attend and give their support.
Please use this opportunity to contact your MP; I’m sure we can actually reach every single one. They have all been contacted by us in the past so are well aware of fibromyalgia. Let’s raise the profile by just one little telephone call to your local MP’s office, it’s as easy as that.
You can watch it from the beginning by clicking on the link below.
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Chief Medical Officer recognises impact of fibromyalgia |
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FMA UK are pleased to see that Chief Medical Officer Liam Donaldson has recognised the impact of fibromyalgia and its prevalence in the number of people in the UK with chronic pain in his 2008 annual report.
Sir Liam commented, Chronic
pain reduces the quality of life more than almost any other
condition. The impact of pain on people's lives is significant,
bringing emotional and financial burdens to patients and their loved
ones. A major initiative to widen access to pain services is badly
needed.
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European medical approval for Lyrica refused |
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 The drugs company Pfizer have been refused marketing approval for
Lyrica (also known as Pregablin) as a treatment for Fibromyalgia within the Europe Union. The Committee for
Medicinal Products for Human Use (CHMP) will publish the reason for its decision to give a negative opinon in this case at a later date.
This decision follows the refusal to
grant a marketing approval for Cymbalta as a treatment for Fibromyalgia in
October 2008. There are no treatments for Fibromyalgia which have European Marketing Approval at present. We have no doubt that this decision represents a significant setback for people suffering from fibromyalgia in Europe and will only increase the frustrations of sufferers as they continue to fight for recognition and proper treatment of their condition.
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Doctor appointed Government Pain Champion |
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 Irene Logan and Des Quinn attended the Cross Party Group on Chronic Pain in the Scottish Parliament on the 22nd April. At this meeting there was the opportunity to meet many clinicians from across the UK, several MSP's, representatives of voluntary groups such as ourselves and patients as well.
It was at this meeting that the announcement that Dr Pete MacKenzie was to be Scotland's Pain Champion and lead clinician on chronic pain in Scotland. He has been appointed to spearhead efforts to improve care for the thousands of Scots who suffer from chronic pain. His role is is to ensure sufferers get improved access to treatment. Recent research commissioned by the Scottish government in 2004 found that almost one in 5 adults in Scotland lived with chronic pain.
Dr MacKenzie said Patients tell us they need their pain to be taken seriously at an
early stage so that it can be treated and they can overcome any related
work or family problems.
Dr MacKenzie's new role was announced by Public Health Minister Shona Robison. He will be spending 2 days a week on the role which will involve the evaluation of existing facilities and treatments and reporting back to the parliament. He will still be carrying out his clinical duties at the coal face in the Southern General pain clinic.
He also said As a country we have begun some excellent and innovative work to help
patients and to recognise chronic pain as a condition in its own right.
Through working together to invest in services and education I'm
confident we can do much more.
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 Are antidepressants really any good at treating fibromyalgia? This is the question we home in on this month as we look at some of the latest research studies, get opinions from expert medical advisory board member, Dr Kim Lawson, and ask various people with fibromyalgia about their own experiences with the different types of available antidepressants..
It is also that time of year again when we get to put forward the names of the people in the FM community who have impressed us with their dedication and support of others for the FMA UK volunteer awards.
With best wishes,
Kathy Longley (FMA UK Editor)(Subscribe to FaMily Magazine to get more of these articles)
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