Action for ME in membership row

Suzy Chapman Chapman, 7 May 2008, 08:23

Membership of this patient organisation carries with it no voting rights and therefore no ability to participate in trustee election processes; no ability to put oneself forward for election as a trustee through a ballot of the membership at an AGM, or to nominate others to stand for election in AGM elections; no ability to attend AGMs or EGMs held by AfME and no ability to make proposals at AGMs or to call for an EGM. Although AfME issues very occasional invitations for expressions of interest for prospective trustees, via its magazine, trustees are selected by the existing trustees, not via a ballot of the membership through a democratic election process.

So although AfME claims on its website that "...our direction and policies are informed by the voices of people with M.E." it is only those voices to which AfME chooses to listen, since the membership, itself, plays no part whatsoever in the selection of its trustees who "...guide, advise and support the Chief Executive to implement the charity's strategy".

When AfME's members become disillusioned with the organisation's policies, with its lack of transparency and with its general view of ME as a biopsychosocial condition as opposed to a physical neurological disease, as defined by the World Health Organisation, and feel that it continually fails to represent their best interests, they are disenfranchised from influencing its governance, its policies and direction because they have no vote. All they can do is vote with their feet.

Suzy Chapman, Dorset

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Gus Ryan, 7 May 2008, 13:06

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Ciaran Farrell, 7 May 2008, 21:31

The linkage to Action for ME was simply that the CEO of AfME Sir Peter Spencer was speaking for ME patients at this conference. The point is that he had no mandate to do so since Action for ME make policy behind closed doors with out reference to us their members. They refuse to acknowledge that we, the members of AfME, have any constitutional rights and therefore we have absolutely no say whatsoever in AfME policy or policy making.

AfME have backed the psychological treatments for ME, Cognitive Behaviour Therapy, CBT and Graded Exercise Therapy, GET which most members of the ME community consider are either of no use or value, or make them worse, as has been demonstrated in AfME’s own surveys of its membership. However AfME continue to promote these therapies as the answer to ME by way of a rehabilitative “cures”, and they have worked with government to help set up a series of nationwide centres at which these therapies are delivered as the “treatments of choice” for ME patients. AfME have even promoted these self same therapies to their membership as well, totally ignoring the results of their membership surveys.

This is just one example of a very great many of a policy that is bitterly resented by those whom AfME claim to serve and represent, but who are given no say in what AfME policy is, and this is why many within the ME community consider that AfME is part of the psychological bias against ME that the ME community are fighting. AfME gain their finance from membership subscriptions, but the bulk of it comes from government and Lottery funding, and again members of AfME have no say in the what the charity applies for grants for, or the work the charity undertakes on behalf of its members who are the beneficiaries of the charity.

The view of the ME community Online was clearly expressed on internet message boards that AfME ought not to condone or legitimise the conference by their presence, and the fact AfME were speaking for patients at the conference when AfME refuse to allow any of its members to have a say in the policy or running of AfME which claims to “be run by and for people with ME” as Trustee Ondine Upton said in the recent Radio 4 series on ME is simply not the case, as AfME are run by an unelected clique, for an unelected clique who refuse to allow people with ME to have a say in the charity that is supposed to represent us, is the height of hypocrisy.

There are series legal issues that I do not consider were dealt with in a proper or series way, and the question I would put to all those at Third Sector is this, ‘who are membership charities actually for, their members / beneficiaries who want a say in the organisation and its policy making with the ability to elect a Board of Trustees, or a self perpetuating oligarchy of the self selecting elite who dispense funds from the public purse to pursue their Victorian vision of “charity” to the poor and needy without reference to those they claim to be helping or representing in any way?”

This raises the issue of wheatear the concept of “charity” is being undermined, and whether the structure of a “charity” who can do such things as AfME appear to be able to get away with render the legal form, function and operation of “charity” as a vehicle for representing the needs of a community, and seeking to provide help and resources from the public purse for a community in need.

Ciaran Farrell

ME sufferer and Steward at the RSM protest

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Gus Ryan, 8 May 2008, 21:41

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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Ciaran Farrell, 9 May 2008, 17:52

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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