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🎰Can you imagine spinning a slot machine and this is what it lands on? For many with fibromyalgia, these are combi… https://t.co/oEdBaE95QZ

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New Secretary for FAPPG
Nick Palmer, MP for Broxtowe, has resigned from the post of Secretary due to pressure of work.  We would like to take this opportunity of thanking Nick for steering the FAPPG though its launch and re-launch and for the tremendous work he has done on our behalf.  Thank you Nick.

In her new role as Secretary of the FAPPG, we would like to welcome Jane Griffiths, MP for Reading East and look forward to working with her in the future.  Welcome Jane.

At the end of a parliamentary term of office, all APPGs have to be disbanded and relaunched under the newly elected government.  Due to the general election in May the APPG was re-launched on 23rd October 2001 at the House of Commons.

There is now a Medical Advisory Board (MAB) attached to the FAPPG and one of their tasks will be to look into research on fibromyalgia.  There is a lot of competition for research funding and the MAB will be meeting with the Medical Research Council (MRC) to discuss this.
Malcolm Wicks, MP - Parliamentary Under Secretary, Dept. for Work and Pensions addressed the meeting and spoke on the assessment process for disability benefits.  Mr. Wicks said that he did not pretend to be a great expert on FM, but that he had come to listen and learn more about the condition and people's experiences of it, especially how it affects employment and benefit issues.  He introduced his colleague, Dr. Moira Anderson.

However, Mr. Wicks is aware of the very serious way in which chronic fatigue syndromes affect people, and he suspects that there is some overlap between chronic fatigue syndrome and fibromyalgia and says that scientifically that is likely to be the case.  He said he has been told that there are at least 30,000 people suffering from such syndromes but that others will put the estimate far higher.  Whatever the number, it's too many.

Although there is more awareness of this medical condition, Mr. Wicks thinks there are still many uncertainties about it and, therefore, much controversy.  Some doctors in the past have regarded it as a purely psychological phenomenon and, at worst, it's all in our heads; he hopes this is now changing.  Others, including some sufferers, feel that it might be a purely physical phenomenon.  His guess would be that we could argue about this but there is no scientific evidence to argue back, we need a more multi-functional approach; what people would call a bio-psycho-social model to understand the syndromes of this kind.  In other words we need to relate physical to behavioral to societal factors.

Mr. Wicks and Dr. Anderson's interest within the Department for Work and Pensions, which was the old Department of Social Security plus the Employment section, is two-fold and these two things are linked.  One is benefit entitlement; the other is the prospect of people being able, despite the condition, to continue with paid work or to re-enter the labour market.  He estimated that some 50% of sufferers are able to continue some kind of remunerative employment and he thinks that is quite an important statistic.

The Minister went on to explain that the medical services who will meet us to assess our benefit entitlement and capacity to work, do benefit from a continuous professional education and his medical services regularly write to doctors with information about fibromyalgia and conditions that may be related to it.

Mr. Wicks re-emphasised that his concern, as Minister of the department, is that people suffering from fibromyalgia should get their full benefit entitlement where that is appropriate.  But, equally where appropriate, and he emphasised the words 'where appropriate', he is concerned that sufferers get the best possible advice too about the ability to continue with work or to return to work in the future.  He said that we do need to be suspicious of any approach to policy in this kind of area that says, ok someone has a medical condition and that means that they have no chance of being able to work.  As he said, 50% of people with fibromyalgia are in employment and we really need to be quite tough minded about those who say that disability always means that people are not able to seek employment.  Where it is possible he thinks they should be on the side of the person who wants to get back into work.

The Minister was asked a number of questions relating to work and benefits and the fact that it is so difficult for FM sufferers to be awarded benefits such as DLA and that the DSS doctors are not always understanding of the implications of FM and how it affects our lives.  The Minister said that he is aware that our condition varies from day to day and his department will be putting together packages to support people who wish to return to work.

Replying to concerns that the visit by DSS doctors, especially for DLA, is not long enough to assess how well a person can cope; the doctor is less than sympathetic and sometimes does not seem to know much about FM, the Minister advised us to bring these cases to his attention by routing our concerns through our MPs.

Another message to come out of this meeting was that sufferers should try to involve their local PCTs as their function is to promote best practice and best knowledge.  We also need to raise awareness of FM across all disciplines including GPs, nurses, physios, O.T.s as well as Primary Care Trusts.

It is very encouraging to know that the government is aware of Fibromyalgia and there is a Department of Health document on fibromyalgia.  

It was the hard work, persistence and determination  of groups and individual members who lobbied their local MPs that made the formation of the APPG possible.  It was only by everyone working together that we have a voice. 

We will keep you informed of any developments in this area. 

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