The very worst of campaigns

[Guest guest]

Colin Barton is Chief Executive Officer (CEO) of the

Kent & Sussex ME/CFS Society. He is the

organisation's Chairman of the notorious UK charity

Action for ME (AfME) and a member of the

Government's Chief Medical Officer's ME/CFS Working

Party.

It is well-known that there is a very close

relationship with Colin Barton/AfME and the

psychiatric " Wessely School " . Below are some quotes

about this connection, but you will find lots of them

by searching the Co-Cure list for " AfME " :

http://listserv.nodak.edu/archives/co-cure.html

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" ....I don't know whether to laugh or cry but someone

has just shown me the latest bumf that Action For

ME have sent out to local groups to encourage them

to campaign for more money for the CFS/ME

coordinating centres. They have done a template

letter for people to send to their MPs and another

one for people to send to the press. They suggest

we get celebrities involved....... "

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0608c & L=co-cure & T=0 & P=767

" ....The recent campaign by Action for ME (AfME) to

engage Members of Parliament in a candle-lit vigil to

save the Government " CFS " Centres by securing more

funding for those Centres would seem to be a case in

point, given that the Centres support the psychiatric

fallacy about the nature of ME/CFS by imposing

compulsory and often inappropriate behavioural

modification strategies such as cognitive behavioural

therapy and graded exercise regimes, even though

the evidence continues to mount that these Centres

are causing actual harm to unknown numbers of

those they are supposed to be supporting (see

Research into ME [RiME] information on Co-Cure,

18th August 2006: " RiME latest - NHS Clinics

Condemned - Part 4 " and see also

www.erythos.com/RiME ).... "

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0608c & L=co-cure & T=0 & P=3681

" ....Is claiming that AfME is proud of itself

for having secured £8.5 million for psychiatrists to

continue studying chronic " fatigue " or " tiredness " ?... "

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0402c & L=co-cure & T=0 & P=5375

" .... In May you asked the Secretary of State for

Health a question about the new NHS 'CFS/ME'

centres which are being developed in England. The

nearest one to me is at Sutton. The job description

for the CFS Service at Sutton Hospital (one of the 12

NHS CFS/ME Centres) appeared on AfME's website,

last year .... (see www.erythos.com/RiME Spring

2005 Newsletter for precis).

Do you really think that the above service will help

people with the neurological illness Myalgic

Encephalomyelitis (ME), and that it is worth saving?

Do you not think that ME might be being confused

with something else? One wonders if politicians are

paying sufficient attention to the crucial issue of

nomenclature... "

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0606d & L=co-cure & T=0 & P=1927

~jvr

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To: Colin Barton colin.sussexme@...

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