Third Sector AfME article: Comment 4 and 5

Clarification:

The article on the Third Sector website: Action for ME in membership row, 07 May 2008, has erroneously presented the RSM Protest as though it had been a protest against Action for ME. The RSM Protest, organised by Gus Ryan, which took place outside the Royal Society of Medicine on the afternoon of 28 April was attended by individuals, some of whom were members of Action for ME and who hold strong views about Action for ME’s governance, modus operandi and policies. However, the Protest was organised, promoted and supported as a protest against the psychiatric/psychological bias of the presenters at the “CFS” Conference and not as a protest against Action for ME, per se, or against Action for ME’s participation in this conference.

For Third Sector article and comments 1, 2 and 3 see:

https://meagenda.wordpress.com/2008/05/07/third-sector-action-for-me-in-membership-row-070508/

Two further comments have been added to the Third Sector article:

http://www.thirdsector.co.uk/Channels/Management/Article/807171/Action-membership-row/

Action for ME in membership row

By Paul Jump, Third Sector, 7 May 2008
Third Sector, 7 May 08
Website version

Comment 4

Gus Ryan, 8 May 2008, 21:41

The Third Sector article, that has been linked to on this list, has erroneously stated that:”Action for ME has defended itself after a public protest from a group of disgruntled  members who believe they are being denied full membership rights.”

and

“The dissident members claim that the charitable company, which broke away from the ME Association in 1994, is acting unconstitutionally because it does not hold AGMs or represent members’ views.

A group of about 16 demonstrated last week outside a conference at the Royal Society of Medicine,  where the charity’s chief executive, Sir Peter Spencer, was due to give a speech. They claimed the board of AfME had become dominated by people who believed ME was a psychological condition. Most ME sufferers, they said, believed it was physical.”

1) The protest outside the RSM was never about AfME. The protest was about the mental health bias of their conference on “Chronic Fatigue Syndrome”. This was stated on various lists more than once and advertised on YouTube.

2) The two open letters presented to Jo Parkinson of the RSM, again published on M.E. lists, did not refer to AfME’s governance.

3) I, being the organiser of the protest and therefore present, am not a member of AfME.

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Comment 5

Ciaran Farrell, 9 May 2008, 17:52

Again Gus Ryan is absolutely right! The problems with the article flow from the way Third Sector investigated and organised the material for the article in that it was not thought pertinent to want to know about or understand the physical / psychological debate, so to use a military analogy, battlefield, thus it was not possible for Third Sector to distinguish between different actions carried out on the same battlefield for the same reasons, but over different though linked issues.

The RSM protest was about the psychological bias of the conference, the linkage to AfME was that AfME were representing the patient’s perspective at the conference by giving a presentation to the conference from the patient’s perspective. This presentation in the view of the ME community ought to have been given by patients, not the CEO of a charity who is not an ME sufferer or a carer.

AfME’s perspective on ME is that ME is a “biopsychosocial” illness with large to very large psychological and social components and a small to very small physical component, which is the prevailing view in government circles, as opposed to a purely physical disease. This biopsychosocial model of ME is unacceptable to the ME community as the ME community believe that ME is defined by the World Health Organisation as a physical neurological disease, and that government, the NHS and the medical profession ought to respect the WHO classification.

Many in the ME community therefore see AfME as having the same kind of psychological bias against the physical nature of ME that the main speakers at the conference have in that AfME is seen as a an undemocratic and non transparent charity whose policy is made behind closed doors by a self selecting clique who work with government to retain a broadly psychological type of status quo, rather than seeking to change that psychological status quo into a physical status quo as AfME members and the ME community want.

Therefore to put it bluntly, it was a matter of birds of a certain psychological feather flocking together at a conference for medical and other health professionals to discuss patients without actually allowing any patients into the conference, and where the patient’s voice would not be properly heard, if it was to be heard at all.

Thus the RSM protest was about presenting a physical presence outside the RSM in protest about the way in which ME was going to be depicted at the conference in a psychological light despite the massive biomedical research evidence base establishing ME as a physical disease, and the sidelining of the patient’s voice which would have spoken out against the psychological representation of ME at the conference if only there had been any opportunity for patients to actually have a voice.

The protest and the postcard campaign have brought home to the RSM that ME sufferers and carers believe that ME is a physical disease and not some sort of mental health condition and that so many mental health professionals of one sort or another speaking at a conference about ME is unacceptable to the ME community, and that patients and carers ought to be given an opportunity to have a say on the matter which is why the RSM will be holding a “Medicine & Me” type of meeting for patients and carers on ME. The RSM would not have done this if it were not for the protest

Ciaran Farrell, RSM protest Steward

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Comment 6

Sue wheeler, 11 May 2008, 08:54

I resigned my membership from AFME because they no longer represent the best interests of their members. They are ever increasingly joinging forces with those who support the theory that ME is a psycho-social disease and favour psychiatric treatments for it. This is unacceptable when there are over 4000 respected medical reports proving the physical existence of ME. There is also now proof that some 88 different genes are malfunctioning in people with ME and they deserve better. Because of these people they do not receive proper care or support. I deliberately left out the word treatment as the MRC steadfastly refuses to fund anything that could lead to treatment for ME sufferers and has confirmed under the freedom of information act that so far several million pounds has been spent on psychiatric treatment research. They say, AFME included, that there are no tests for ME. This is a lie.

There is no simple blood test yet granted but there are a range of tests which conducted together can physically prove the existence of ME in a patient. These tests include Spect and PET scans, now ok these are expensive but compared to keeping people unwell and on benefit (once they have fought to get them) they are cheap. Not one person with ME wants to live the life they do yet they are mis represented and portrayed as skivvers who are simple ‘tired.’ The abuse is staggering – can you imagine what would happen if someone with cancer for example had to endure this and were told to ‘talk’ themselves better? Outrageous. And this is what AFME are aligning themselves to. For the record, they never gave me the decency of a response.

As for the RSM conference protest, the small number is indicative of how difficult it is for people with ME to do things. I wanted to go but the journey alone would have made me ill for several days, and of course there is the expense as despite being very limited in my activities I don’t qualifiy for any other benefit except incapacity benefit and I only got that because the DWP decided i have “moderate to severe mental ill health.” I don’t and never have had. I have moderate to severe ME.

The term CFS is an insult to all of us with this devastating condition and reflects the contempt with which we are treated by the medical profession.

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