Third Sector: Action for ME in membership row, 07.05.08


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.

Third Sector, 7 May 08

[There is a comments facility]

Website version


Action for ME in membership row

By Paul Jump, Third Sector, 7 May 2008

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.

The charity, which supports people with ME – also known as chronic fatigue syndrome – said that its 7,673 fee-paying members were not entitled to vote at AGMs because they were not members in a  legal sense.

A Charity Commission spokeswoman said it had dismissed a number of complaints on the issue between 2003 and 2005. “We were satisfied that there had been a misunderstanding,” she said.

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.

“Only by re-establishing the democratic link between AfME and its membership will AfME gain a mandate to speak and act on behalf of us,” said Ciaran Farrell, a member of AfME. “Filling in a questionnaire is not the same as being able to vote on policy or elect trustees who see things your way.”

Richard Evans, trustee and company secretary of AfME, said the charity’s website made it clear that “being a member of AfME, the organisation, is not the same as being a member of Action for ME, the company limited by guarantee, as a company law matter”.

He said the charity’s latest AGM had been held in February and that trustees, who are the only legal members, had been invited.

A spokeswoman added that AfME required the majority of its trustees to have had ME, and that all but two of the current 10 board members were either sufferers or carers. She said the disgruntled group had been campaigning against AfME for many years.

Governance expert Judith Rich said charities should hold regular meetings with their memberships regardless of whether it was legally required. “That is the only way charities can be sure they are truly representing the views of their members,” she said.


From Third Sector article comment section:

Suzy Chapman, 7 May 2008, 08:23

Many of the estimated 250,000 ME sufferers in the UK lost confidence in Action for ME (AfME) years ago and have terminated their memberships; this is reflected in their falling membership figures. They have become disillusioned with the way in which Action for ME operates and with its lack of transparency and are critical of the charity’s relationship with government and with bodies such as NICE and the MRC. They do not believe that Action for ME effectively represents their needs as sufferers of a disabling and debilitating illness.

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


Gus Ryan, 7 May 2008, 13:06

Just to clarify things, the RSM protest was about the psychiatric bias of the “Chronic Fatigue Syndrome” conference – not about AfME’s governance. I was the organiser of the protest.


Ciaran Farrell, 7 May 2008, 21:31

I am very disappointed in the way this story has been written up, Gus Ryan is right the RSM protest was about the psychiatric bias of the conference about CFS as opposed to ME held at the Royal Society of Medicine.

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 without 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 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 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 serious legal issues that I do not consider were dealt with in a proper or serious 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 whether 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


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s