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January 2004
A DOSSIER OF CONCERNS
ABOUT THE CHARITY ACTION for ME (AfME)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
ACTION FOR ME - 'FREE FROM BIAS'?
"We define accountability and transparency as the provision of
relevant and reliable information to stakeholders in a manner
that is free from bias, comparable, understandable and focused
on stakeholders' legitimate needs and will be assessing the
Reports and Accounts on this basis."
Statement from the Charity Commission of England and Wales
"The largest patients' charity, Action for ME, is working closely
with Wessely and his colleagues on new research initiatives
funded by the MRC and the NHS."
Statement from Lord Turnburg, House of Lords Debate, 22
January 2004
Contents
~~~~~~~
1: INTRODUCTION
2: THE AFME STANCE
3: AFME MEMBERS / SUBSCRIBERS
4: THE AFME ACTIONS
5: AFME AND THE DEPARTMENT OF HEALTH
6: THE FURTHER PSYCHOLOGISING OF ME
7: THE NON-EXISTENT AFME / WESTCARE MERGER
8: THE QUESTIONS
9: WHAT IS REQUIRED
10: CONCLUSION
11: STATEMENT - THE CHARITY COMMISSION OF ENGLAND
AND WALES
1: INTRODUCTION
ACTION FOR ME (hereinafter referred to as AfME) is a UK
based charity. Questions about the charity's conduct and
stance, repeatedly posed by both members/subscribers to both
AfME and to the Charity Commission of England and Wales
have remained unanswered.
AfME, constituted as a charitable company, has not seen fit to
hold an Annual General Meeting (AGM) for its
members/subscribers for the last eight years - since 1996.
On the 9th November 2003, an AfME Trustee, Mr. T. Golding,
stated in public and on the record at a London UK Local ME
Group Meeting that the ME/CFS community (sufferers, carers
and supporters), would be given answers to certain questions.
What are these questions? Members/subscribers need
information regarding the following:
1. What is AfME's stance on current Government policy on the
issue of ME/CFS?
2. By what mandate does AfME speak for its
members/subscribers and the ME/CFS Community in support of
its stance?
3. What is AfME's financial situation and from whom does it
receive funding?
4. On what evidence does AfME sanction the promotion of
management approaches that include psychosocial
interventions such as Adaptive Pacing Therapy (APT) /
Cognitive Behaviour Therapy (CBT) /Graded Exercise Therapy
(GET)?
5. Who was instrumental in the present liaison of AfME with
Government Departments and with the National Health Service?
6. How much money has AfME received as a result of that
liaison?
7. What is AfME's structure since the alleged merger with
Westcare (claimed to have taken place in September 2002)?
8. Is AfME accountable to its members/subscribers?
AfME members/subscribers have been denied an open
dialogue opportunity with this charity for the last eight years, yet
engaging in dialogue with "transparency" is mandatory in
accordance with the requirements of the Charity Commission.
Suitably full and frank answers to the legitimate questions set out
in this document would provide some idea of the charity's
present stance.
The concerns of the ME/CFS Community around AfME's
conduct are presented below:
2: THE AfME STANCE
*) AfME presents itself as the only major national ME/CFS
charity in the UK that acts as spokesperson for adult ME/CFS
sufferers. It presents itself in this way to the Government, to the
Department of Health, to the Local Education Authorities and to
the media. AfME is supposedly a patient focused organisation.
*) Currently, the management regimes that AfME is sanctioning
are psychosocial interventions promoted by a small group of
psychiatrists led by Professor Simon Wessely. AfME is also
selling these management approaches direct to its
members/subscribers through its so-called 'merger' with
Westcare.
*) AfME is receiving government money regarding trials of
further psychosocial interventions, which have been
recommended by the Medical Research Council in conjunction
with Professor Wessely. These are the management regimes
that have been consistently shown in major surveys to make
many people worse.
*) AfME itself carried out a survey of 2,338 respondents and in
March 2001 published its report "Severely Neglected - M.E in
the UK". (AfME promoted 'Severely Neglected' as the largest
ME study ever done, for which it was reported to the Charity
Commission). Of significance is the fact that in AfME's
preliminary -confidential version of that report dated 26th
February 2001, it clearly states on page 6 that "graded exercise
was reported to be the treatment that had made most people
worse". This was entirely omitted from the final version of the
report, and it is now the case that, in defiance of its own
evidence but in conjunction with the current psychosocial model
of ME that is being so heavily promoted by psychiatrists of the
Wessely School, AfME is now actively promoting this very
management strategy for those with ME/CFS.
*) It is a matter of concern that AfME continues to support
psychosocial interventions such as graded exercise, given that
the former Medical Adviser to the older charity the ME
Association has made it plain that graded exercise may be
harmful to ME patients and that he received more adverse
reports about this than about any other intervention. He also
made it publicly known that doctors have now been warned by
their insurance companies that they must take as much care
over prescribing such exercise regimes as over prescribing
drugs, otherwise they could be taken to Court. This advice can
be found in Medical and Welfare Bulletin 2001:2:8 published by
The ME Association.
*) The confidential report (never released) was unequivocal that
rest, pacing of energy levels, dietary changes and nutritional
supplementation were without doubt the most beneficial
management interventions, yet these results were also omitted
from the final report.
*) This is despite the fact that serious concerns have been
raised and sustained, since 1988, within the international
ME/CFS patient community and the international ME/CFS
research and clinical community, that the position taken by
Wessely and his colleagues has caused and continues to cause
damage to ME/CFS sufferers in the UK.
*) On 22nd January 2004 it was stated in the House of Lords by
Lord Turnburg that AfME is working closely with Professor
Simon Wessely and his colleagues in the psychiatric lobby. As
Professor Sir Leslie Turnberg, it was under his auspices as
President of The Royal College of Physicians that the biased
and much-criticised Joint Royal Colleges' Report on CFS was
produced in 1996 that he fully supported. It is Lord Turnberg
who is recorded in Hansard (HL4254) as asking Her Majesty's
Government "What is their position on cognitive behaviour
therapy for chronic fatigue syndrome as recommended by
Professor Simon Wessely and colleagues". During the debate
on 22nd January 2004, the Health Minister (Lord Warner),
alluded to the fact that Professor Wessely had received a
research medal specifically for his work on CFS/ME, (not, Lord
Warner was at pains to point out, from the Royal College of
Psychiatrists but from the Royal College of Physicians). What
Lord Warner failed to mention was that the medal was awarded
whilst Lord Turnberg was President of The Royal College of<
Physicians.
*) It should be noted that AfME now seems to make no
distinction between chronic "fatigue" and the "chronic fatigue
syndrome" (another term for ME), even though there is extensive
evidence that the two disorders are biologically different. It is the
case that at one time, AfME even included within its logo the
words "Action for ME and chronic fatigue" (which it has now
removed), and the Charity Commission has confirmed that
AfME had made no representations to them concerning any
amendment to its object statement which was granted in 1994.
*) AfME has neither remit nor mandate to sanction or to
promote anything that has been shown to make ME/CFS
sufferers worse. It has not held an AGM that involved its
members/subscribers for the last eight years, since 1996. Even
so, AfME maintains that it represents its members/subscribers
and therefore the ME/CFS community at local, regional and
national government and to the Health Service.
*) Many frightened and very sick people are deeply dismayed
that AfME purports to be the only viable support organisation
that represents their best interests, when such is clearly no
longer the case.
