Third Sector AfME article -a clarification

[Guest guest]

From: Suzy 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-membershi\

p-row/

The article on the Third Sector website: " Action for

ME in membership row " by Third Sector journalist,

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 , 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.