In April 2004, Action for ME’s then Chief Executive, Chris Clark, circulated a commentary via the Co-Cure emailing list. Four years down the line, AfME are still not holding AGMs to which their members are invited to attend, continue to claim that their members are only “subscribers” and 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” [ see: Action for ME in membership row ].
I think it’s worth giving this statement from Chris Clark another airing. This is followed by a response from Ciaran Farrell. See also The AfME Dossier by The ONE CLICK Group.
From April 2004 via Co-Cure:
THE PACE (PACING, ACTIVITY AND COGNITIVE BEHAVIOUR THERAPY: A RANDOMISED EVALUATION) TRIAL
I detect a worrying trend that has crept into this field recently.
The main patient organisations strive to represent people with M.E., almost always led by people who themselves have M.E., and usually staffed by many people with M.E.
Our fight is usually conducted on very limited resources, and our record in attracting publicity and support for our cause is envied by many larger charities.
But behind the scenes a handful of people create a website or chat-room, giving it a fancy name, and instantly claiming (on what grounds?) to “represent the M.E. Community”.
By what rights do they make this claim? Do they have thousands of members?
Do they – as we do- regularly consult our membership?
Have they held AGM’s? – we have.
Are they – as we are- bound by any regulatory framework?
Have they ever put themselves forward as trustees when the organisations have advertised in their journals?
Or are they representative only of themselves and a handful of electronic friends, issuing distorted or malicious attacks on the patient organisations?
The latest twist is quite clever. It consists of:
1. Issue a series of complaints against an organisation to a regulatory authority, which the authority is duty bound to investigate.
2. Announce to the world, that “X Organisation is under investigation”
3. Fail to publicise that the complaints have been rejected or referred back to the Organisation itself.
We at Action for M.E. have experienced this. It has diverted resources away from campaigning for people with M.E. and into answering the complaints.
We now note that the ME Association are now under similar unfounded attack.
May I ask how Co-Cure thinks it is helping the M.E. community by being manipulated in this way?
Action for M.E.
Commentary from Ciaran Farrell
12 June 2008
I really think that I need to clarify one point in these discussions about AfME and the statement by Chris Clark about AGMs.
When Chris Clark, or indeed now possibly Sir Peter Spencer, or anyone else from AfME has mentioned AGMs, they have meant an annual meeting of the Board of Trustees which is also the board of directors of the charitable company, AfME, which is a closed meeting and not open to the membership of AfME, where this committee (which is termed the Council of management in AfME’s Memoranda & Articles of Association) meets and appoints its leaders of one sort or another behind closed doors and without reference to or consulting AfME’s members or the ME community, in any way shape or form.
These so-called “AGMs” are not those specified in AfME’s Memoranda & Articles of Association – AfME’s constitution – because the constitution gives formal constitutional and legal rights to members of AfME to attend AGMs, to vote at them on policy issues, to hold to account the current committee for its actions and administration of the charity over the course of the previous year, including being accountable for the organisation’s finances and approving those finances and the auditor’s report, and electing a committee to be this Council of management for the next year.
Chris Clark and others at AfME have used the term AGM, but they are simply refusing to be accountable because they are pretending that they do not have any members when legally the fact and reality is that they do, and that they have disenfranchised all their members from the constitutional and legal processes of the charity that are set out in AfME’s Memoranda & Articles of Association!
In other words, AfME have fraudulently talked the talk about holding AGMs, but have absolutely refused to walk the democratic walk, or to give their members any say whatsoever in the running of the membership charity, which by any moral, ethical, legal, and any and every other standard I can think of, is an abuse of power and the position of charity trustee.
It is not surprising then that AfME makes its policy behind closed doors and does not, and will not consult their members or the ME community on any policy issues whatsoever, and neither will they respond to correspondence from individual AfME members or the ME community when people ask difficult or contentious questions, or challenge them about the mandate they have for pursuing the psychologically orientated biopsychosocial model of ME.
The leadership of AfME, and its CEOs in particular have championed CBT and GET as well as the PACE/FINE trials and have led the organisation deeper and deeper into the psychological woods in the face of the gritted teeth and opposition of sufferers and carers who have protested against these policies and against AfME’s strategic direction and leadership, but to little effect, as AfME do not see their job in terms of representing the views of sufferers and carers, and neither does AfME consider that it ought to be accountable to its membership or the ME community!
I realise that many readers will know exactly what I’m talking about as this is hardly news to anyone, so something must clearly be done about AfME, perhaps by forcing them to have proper AGMs where members can vote out those currently on the committee, and return the organisation to democratic control, or alternatively setting up some kind of new organisation that would be democratic, and would represent the voice of ordinary sufferers and carers.
Therefore it is simply a question of who is prepared to do what needs to be done, rather than engaging in debate about leaders and leadership, when it is quite apparent that the leaders and leadership of AfME has been disastrous for the ME community. I might add that the leadership of the ME Association has been little better as the MEA has pursued the “-opathy” route in order to curry favour and acceptance with government and the medical profession in a similar way to the way in which AfME have sought the favour of government and the medical profession by accepting the biopsychosocial model of ME. In my opinion, “-opathy” is simply the MEA’s version of the biopsychosocial model.
Therefore the question I would pose at this time, in addition to the one above, is how long are we going to remain scattered and divided as a community instead of getting together and doing something about it – either by major campaigns to reform the existing charities, or to set up an alternative to them?