Wake up to Action for ME: Response to Colin Barton

In response to his mailing: Wake up to Action for ME: Email to Pelham PR published 05 March 2008 Ciaran Farrell has received a missive from Mr Colin Barton.

Mr Barton is Chair of the Sussex ME/CFS Society, but since he does not trouble himself to sign his email it isn’t possible to determine whether he writes to Mr Farrell in a purely personal capacity or as Chair of the Sussex ME/CFS Society. According to its website, the Sussex ME/CFS Society is affiliated to Action for ME (AfME).

The subject line of Mr Barton’s comments is: The very worst of campaigns. Mr Farrell has made the following response to Mr Barton:


From: Mr. Ciaran Farrell 
To: Colin Barton 
Sent: Wednesday, March 05, 2008 9:13 PM
Subject: RE: The very worst of campaigns

Dear Mr. Barton,

In response to your E – Mail I consider that I believe in 2 big things that you apparently consider to be unimportant, and they are firstly, the rule of law in that charities ought to obey their governing document and charity and company law which backs up AfME’s Memoranda & Articles of Association. AfME are breaking their Mem & Arts by refusing to hold an AGM and therefore they are denying their members of whom I am one a democratic voice in electing Trustees/Directors of AfME, and they are also denying me together with their membership a democratic voice in policy making.

Secondly, it is the principal of democracy that I believe in, and by that I mean that a membership charity belongs to its members and ought to be there to serve them as decided through policy making conducted through the ballot box. This end can only be obtained if AfME are prepared to abandon their unconstitutional and illegal management of the charity’s affairs. Therefore this can only be achieved through the rule of law in that the appropriate laws ought to be applied to AfME, perhaps through legal action through the courts as refusing to hold an AGM is a specific offence in Company Law under the Companies Act 1985 for which the Directors of the company concerned can be fined and even disqualified.

In is not simply the fact that the law is being broken, it is also the fact that The AfME Trustees/Directors have no democratic mandate for their policy in this matter or any other because they are not entitled to hold office under the terms of the Mem & Arts without being re-elected, which clearly they have not been since they refuse to hold an AGM to conduct the legally required elections.

Since 1996 AfME have appointed their Trustees/Directors through an undemocratic selection process designed to ensure that only the trusted mates of those currently on the board will ever join the board. Occasionally they place ads in AfME’s InterAction magazine for new Trustees but they are not serious about actually conducting any form of recruitment or selection of actual Trustees, the whole exercise is merely for PR purposes as the last such exercise in 2007 demonstrates. Therefore I find it offensive for Ondine Upton to say on the ‘You & Yours’ Radio 4 series about ME, as she did, that AfME is run by people with ME for people with ME, as she quite clearly has no democratic or legal right to speak for the membership of AfME as a Trustee/Director of the charity.

Due to the fact that the democratic link between the membership and the AfME Board of Trustees/Directors has been broken, AfME consider that they do not need to consider the memberships’ views on policy matters as they consider that they know best, and this has led to conflict between the membership and AfME in the past, and no doubt will do so again.

One recent example of this is the AfME National ME Observatory for which AfME received over £500,000 of public money from the Big Lottery Fund, yet AfME refuse to make available to the ME community and the public the names of those researchers and representatives of other organisations who are responsible for the oversight of this money. Some of the names of the lay members involved were published in InterAction, but none of the others. Even so, this falls a long way short of the public accountability that is required in general for the use of public money and for major grants in particular. AfME did not set up the “Observatory” as they were required to do by the Big Lottery Fund, and the “Observatory” is not a constitutional part of AfME although it is obviously some kind of offshoot, and it has no constitution and no formal legal status. AfME refuse to make any public statement about how the “Observatory” works and how it is managed, and by whom and under what rules the business of the “Observatory” is conducted.

What has, however, come to light is that AfME recruited AfME members to sit on a Steering Group which has been marginalized by the CEO, and a “Reference Group” composed of people who were manoeuvred out of a place on the Steering Group because they were not on AfME’s predetermined slate of preferred candidates, organisations and VIPs. This “Reference Group” is now barely in existence and it is completely tokenistic. The entire “Observatory” project is run and managed from within AfME by the CEO and one or two close aids. The so called “Buddy Scheme” that was supposed to provide a means by which and through which lay members who would have difficulty attending meetings or carrying the workload does not exist.

This is hardly the sort of record of participation and involvement that is acceptable, and only this only came about because AfME were forced by the Big Lottery Fund to include lay members of the charity or “beneficiaries” of the project as the Big Lottery Fund see them because AfME would not include lay members on the Project Steering Group at all, in defiance of the Big Lottery Fund’s Standard Terms and Conditions for projects they fund.

AfME recruited lay members to the Steering and Reference groups on a false premise in that they offered out an opportunity to be able to get involved with the actual research conducted by the “Observatory” and be a part of the design and build of the projects involved, but this was not in fact or reality the actual situation as the projects had been completely set up and had been running for many months before AfME conducted their recruitment exercise.

Therefore there was no input from anyone with ME into the design, build or set up of the “Observatory” and the 6 research projects it is undertaking supposedly for people with ME, and for which AfME obtained a grant of over £500,000 to benefit people with ME.

The actual job itself involves the monitoring of the projects only, and this must be done in such a way as to avoid any comment or proposed action that might impact on either the project budgets, or time table or day to day management of the projects by either AfME or the researchers concerned, which excludes any practical matters since AfME and in particular its CEO interpret any comment made by any lay member to see if it breaches any of his criteria for the making of acceptable comments. He considers that any comment that is less than favourable in his view is negative, and he considers that those who make negative comments ought not to have a place on his team.

Therefore although AfME were forced to include lay members they are not to be listened to because they are only there for decoration, and therefore their presence has been rendered entirely tokenistic.

It is of great concern to me that a grant of over ½ a million pounds is administered in this way, and it is because of the modus operandi of AfME and their CEO in particular that I am concerned about the way in which matters could develop with AfME’s involvement with Fundraising Companies, PR Companies and businesses who act for and with government as government contractors, advisors and management consultants. That is why I chose to make some of those involved aware of some of the issues, as I do not believe that any and all so called inward investment in AfME and therefore presumably by extension the ME community is always necessarily a good thing, because I do not consider that this investment as you perceive it to be ought to be obtained with a blank cheque of loyalty at any price to a charity like AfME who refuse AfME members, myself included, the right to vote on a proposal for such “investment”.

The reason why I chose to write to the PR company concerned instead of taking the matter up with AfME is simply that it is well known that AfME do not respond to members queries, questions, comments or complaints contained in letters , E – Mails and Faxes, and they do not return telephone calls, and this has certainly been my experience of AfME, so I do not consider that I owe any debt of loyalty to those who will not even bother to respond to me whatever means I use to convey my questions, queries, comments or complaints to them about any matter, so I did not consider that it would be worth while on this occasion about this particular matter.

If the matter of this inward investment and the partnerships involved were placed before the membership, then we could see what the deal was and why AfME consider it to be a good one, but since AfME do not trust their members enough to make such decisions through the ballot box, why should I consider that I ought to trust them, or be loyal to them?

I would very seriously advise you to check out these actual and prospective AfME partners before passing judgement on the matter!

Yours Sincerely,

Ciaran Farrell
AfME Member and Severe ME Sufferer


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