Wake up to Action for ME: Response to Pelham PR

Wake up to Action for ME: Response to Pelham PR
by Ciaran Farrell Email Ciaran Farrell

To: Pelham PR Pelham PR
Sent: Tuesday, March 04, 2008
Subject: Wake up to Action for ME

Dear Pelham PR,

I read the InterAction [Action for ME magazine for members] ME news today, Oh Boy! About 3 lucky PR Blonds who want to make the PR Grade, but I think they really come from Stepford, so I thought I would like to wake you up to the real Action for ME by taking a leaf out of their book of using “guerrilla marketing techniques”, but I would not go as far as “viral campaigns” for reasons that will become apparent in my 6 bullet points about Action for ME as follows :-

1] Action for ME is a charity company charity Reg no 1036419, and it is also a company limited by guarantee with no share capital etc which permits its registration under the heading of “social work without accommodation” in the Companies House Register of Companies with a Company no of 02906840. Charity companies are those that are formed for exclusively charitable purposes and they must obey both charity and company law, and in particular the charity company must obey its defining or governing document, its Memoranda & Articles of Association, which serve as its constitution. Any breach of the rules contained in the Mem & Arts is termed “a breach of trust” by the Charity Commission.

2] Action for ME has not held an Annual General Meeting since 1996 in clear defiance of its Mem & Arts, charity and company law, and refuses its members, who are members of both the charity and the company Action for ME, the opportunity to engage in any constitutional processes and procedures as defined within Action for ME Mem & Arts, for example, the opportunity to elect members to the Board of Trustees/Directors of the charity company, as well as refusing the membership an opportunity to vote on policy issues. Therefore policy is decided by the select few who currently run Action for ME from its boardroom, and they do not and will not consult their membership on policy or on the strategic direction of the charitable company that they run.

3] The World Health Organisation classifies Myalgic Encephalomyelitis under the heading of Post Viral Fatigue Syndrome, PVFS at G93.3 in the Neurological Chapter of the International Classification of Diseases, ICD 10 which is the version currently in force. PVFS is itself classified under the heading within the Neurological Chapter for Diseases of the brain & spinal cord. Chronic Fatigue Syndrome, CFS is indexed to PVFS at G93.3 for viral onset. In other words, the WHO consider that ME, PVFS and CFS are equivalent terms for essentially the same illness and they use the technical term “synonyms” for this within their classification system. What the WHO mean by the classification of ME is that the cause is thought to be viral and it is a virus that causes damage through infection of the body in general and to the brain & spinal chord in particular. Action for ME consider that there are 5 MEs which range from the mostly physical in which there is a significant psychological component to ME through to ME being virtually “all in the mind”. This is wrong and it is false to say so as the Diagnostic and Statistical Manual of the American Psychiatric Association which categorises mental and behavioural disorders alongside the WHO classification system contains no entry for ME, PVFS, CFS or anything that is deemed to be in any way equivalent to them. Therefore Action for ME misunderstands and deliberately misrepresents the nature of ME as an illness in which psychological factors are significant, dominant or defining and causative when this is simply not the case.

4] Action for ME works in partnership with those in the medical and academic arenas to conduct research into ME on a predominantly psychological basis in accordance with what is termed the “biopsycosocial model” of ME as being some kind of composite of all these causative and psychological ‘maintaining’ factors in defiance of the WHO classification and the interests of ME sufferers, carers and most particularly the membership of Action for ME who are predominantly ME sufferers and carers. One example of this is Action for ME’s active participation in the PACE/FINE Trials in which psychological treatments are being tested against each other in order to see which one of them is a better ‘cure’ or rehabilitation technique, when it is bad, wrong and false to try to cure or rehabilitate people with a physical disease through psychological methods that assume a predominantly psychological causation and maintained of a predominately psychological illness.

Another example is the so termed Action for ME National ME Observatory that is conducting epidemiological research into ME on this basis using a Patient Questionnaire that asks if patients were “happy” and “active” throughout their lives and when they first experienced generalised non descript chronic Fatigue or “the tiredness symptom” instead of using the WHO classification system to define who has ME so that the number of people with ME can be counted for the purposes of the study.

5] Action for ME conducted surveys of its membership which show that Graded Exercise Therapy and Cognitive Behaviour Therapy, two of the controversial therapies involved above either had little or no effect or caused significant or very significant damage to the ME patients concerned, but Action for ME refuse to take on board the results and message of their own surveys, which are a very loud and clear message from Action for ME’s membership that these psychological approaches do not work and that the membership want to see them dropped. However Action for ME continues to promote these therapies to government and to their membership as an answer, a rehabilitative methods and ultimately a cure for ME despite the fact that it is simply not true.

6] The members of Action for ME cannot change any of the above because the Board of Trustees/Directors of Action for ME is a self selecting clique and they refuse members their legal and constitutional right to change the polices and personnel of the Board of Trustees/Directors in order to reverse current polices. In other words, there is a large and growing concern with the ME community that Action for ME is part of the problem for people with ME and their carers, and not part of the solution.

Ciaran Farrell
Action for ME Member and Severe ME sufferer

Mr Farrell has also written to The Ultimate Pillow Fight League 

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