Third Sector AfME article: clarification from Farrell and Chapman

A clarification of factual inaccuracies in the Third Sector article “Action for ME in membership row”

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

The article on the Third Sector website: “Action for ME in membership row” by Third Sector journalist, Paul Jump, published on 07 May 2008*, has erroneously presented the RSM Protest as though it had been a protest against Action for ME. This is not the case.

The RSM Protest, organised by Gus Ryan, who is not a member of AfME, took place outside the Royal Society of Medicine on the afternoon of 28 April. It was attended by individuals, some of whom are members of AfME as well as others who hold strong views about AfME’s governance, modus operandi and policies, but they were not there to protest against AfME, specifically. Those present saw AfME as part and parcel of a larger problem encompassed by the Royal Society of Medicine “CFS” Conference, of which AfME were only a part.

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 AfME, per se, or against AfME’s participation in this conference.

There were a number of separate initiatives made by prominent ME advocates/activists and many individuals who wrote in to AfME, or the RSM, on this precise point. These initiatives were not directly part of the RSM Protest, itself, and the only linkage between them and the RSM Protest was that they arose out of discussion of the RSM Conference on ME internet message boards.

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, or 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 ME sufferers and carers, 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 and NHS 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 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 CFS in relation to ME sufferers’ and carers’ lives without actually allowing any ME sufferers and carers into the conference, and where the voice of ME sufferers and carers 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 biopsychosocial mental health condition and that therefore so many mental health professionals of one sort or another speaking at a conference about ME is unacceptable to the ME community. The RSM has also been left in no doubt that from their perspective 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 sufferers and carers on ME.**

The RSM would not have done this if it were not for the Protest, so this shows that protests do work and can obtain results.

Ciaran Farrell, RSM Protest Steward
ciaran@jfarrell58.freeserve.co.uk

Suzy Chapman, “On a Postcard, please” Campaign Co-ordinator
me.agenda@virgin.net

*A copy of the Third Sector article can also be read at:
http://thirdsectorafmearticle.notlong.com

**Confirmed by Mr Ian Balmer, Chief Executive of the Royal Society of Medicine, on 13 May.

 

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