Page 2 of 4
January 2004
A DOSSIER OF CONCERNS
ABOUT THE CHARITY ACTION for ME (AfME)
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3: AfME MEMBERS/SUBSCRIBERS
AfME members/subscribers have not been privy to policy
decisions made by this charity.
AfME is constituted as a charity company - a company founded
for charitable purposes - that has Members and a Memoranda
and Articles of Association.
AfME has a Constitution. Under this Constitution,
members/subscribers are entitled to elect the Board of Trustees,
the Chairperson and other Officers of the Board.
Not only have AfME members/subscribers not elected these
Trustees, many of them do not even know who these people are.
As members/subscribers, do they not have rights?
They have the right - amongst others - to make, set and rescind
policy on any area of AfME's operation.
In fact, AfME denies that it has a membership as such. It does
not consider that the people who subscribe to the company by
subscription are members but claims they are merely passive
donators to the work of AfME. AfME uses the term subscribers
but refuses to comment on what that term legally means.
It is widely believed that AfME has been awarded many
Government grants that have been obtained on the basis of
AfME performing certain tasks in specific ways. Personal
subscriptions obtained from AfME members/subscribers
account for only a proportion of its income.
AfME members/subscribers have not been consulted regarding
the terms of these tasks and arrangements.
AfME has also failed to properly inform, involve and consult its
members/subscribers on questions of policy, policy making and
the strategic direction of AfME as well as the form and function
of this charity.
This has led AfME to adopt a strategic position, stance and
vision of the future direction of this charity that is not shared by
its members/subscribers because it lacks the mandate required.
AfME members/subscribers have been completely
disenfranchised.
4: THE AfME ACTIONS
The Department of Health UK has recently allocated £8.5m to
help UK ME/CFS sufferers Whilst this is welcome, concerns
abound over the involvement of AfME with the disbursement of
that money, which members/subscribers do not wish to be
devoted to more psychiatric studies but to research into the
organic basis of the disorder. This seems to be increasingly
unlikely.
National Health Service Hospital Trusts in the UK have placed
bids with the Department of Health for this money that has been
provided in order to assist ME/CFS sufferers.
This money is to be used to establish Centres of ME/CFS
expertise across the country, to set up the development of
services and to improve clinical care.
However, it has now become clear that the main management
regimes that such Centres will be offering are to be
psychosocial interventions and that these programmes will be
under the direction mostly of psychologists and psychiatrists,
some of whom (such as Professor Elsa Guthrie in Manchester)
are known to specialise in somatization disorders.
It is of serious concern that The York Review of the best
"evidence-based" management regimes relied upon by the
Chief Medical Officer's Working Group on CFS/ME commented
that the very few existing studies were of poor quality and that
they do not detail what happened to those who had to drop out.
These are the treatments that the national patient organisation -
AfME - is sanctioning, promoting and selling direct to the public.
The AfME stance over its role in the £8.5m awarded to help
ME/CFS sufferers and these ME/CFS Centres is becoming
clear.
If the money goes to the ME/CFS Centres, where will the money
come from for domiciliary support, diagnosis and respite care,
which, according to the published view of the Tymes Trust UK
charity and that of patients, is the real priority?
5: AfME AND THE DEPARTMENT OF HEALTH
In regard to this money and how it is to be spent, AfME has
made two public announcements:
1. That an AfME employee has been seconded to the
Department of Health Secretariat to act as an Observer on the
Steering Committee that has reviewed and will continue to
review bids for the ME/CFS Centres and treatments.
2. That this same AfME employee is specifically employed to
help the ME/CFS community work with the local PCTs (Primary
Care Trusts, Health Service) in the development of these bids
and facilities.
These publicly stated roles are contradictory. Precisely what is
the AfME role in this? Observer or Participant?
Why did AfME select an individual for this key role seconded to
the Department of Health Secretariat who has had but a few
short months experience of ME/CFS? How can someone with
such a lack of in-depth knowledge of this most complicated of
illnesses liaise for the ME/CFS community with the Department
of Health?
When attempts were made to question said key AfME employee
on the 9th November 2003 regarding the ME/CFS Centres bids
issue, the posing of these questions was refused by an AfME
Trustee, Mr. T. Golding, who is also Chairman of a Local ME
Support Group.
This AfME employee was unable to furnish this Local ME Group
with any details of the 80 medical expressions of interests for the
£8.5m whatsoever.
Despite repeated requests, AfME refused to provide ME/CFS
sufferers with any full and frank disclosure of these bids. It
refused to provide the full information required to review these
bids locally, regionally and nationally in order to come to an
informed decision.
On the 23 January 2004 the Department of Health announced
the ME/CFS Centres and the Clinical Disciplines that would run
them, without any apparent consultation with the ME/CFS
Community.
The complete lack of transparency regarding these bids for the
£8.5m has been execrable.
6: THE FURTHER PSYCHOLOGISING OF ME
Professor Simon Wessely (psychiatrist) stated in public and on
the record at the Eliot Slater Lecture that:
"There is also a phenomenon known as myalgic
encephalomyelitis - or ME. I will argue that ME is simply a belief,
the belief that one has an illness called ME."
However, contrary to Professor Wessely's beliefs, ME is not a
belief system. It is an organic illness. This is recognised by the
international ME/CFS research and clinical community. The
large body of research evidence demonstrating this fact
continues to grow. ME/CFS charities in the UK such as MERGE
(ME research) and Tymes Trust (The Young ME Sufferers Trust)
recognise the illness as having an organic basis. The World
Health Organisation classifies ME as a neurological disorder,
with CFS being one of the listed terms by which it is also known.
Yet the AfME charity continues to work with Professor Simon
Wessely and his colleagues, to the apparent exclusion of other
specialists, despite the concerns about the damage to ME/CFS
sufferers in the UK caused by the approach of the 'Wessely
School'.
Canada has recently produced pioneering clinical Guidelines,
Treatments and Protocols drafted under the authority of the
governmental "Health Canada" by an Expert Medical Consensus
Panel (available on
http://www3.sympatico.ca/me-fm.action/journal.pdf)
The eleven international ME/CFS expert physicians who made
up the Panel, have between them diagnosed and/or treated
more than 20,000 ME/CFS patients. This represents the most
substantial breakthrough on treatments for ME/CFS sufferers
worldwide. It is treatments like these that the ME/CFS
community would like our Department of Health to consider, not
those treatments propounded by the 'Wessely School' who do
not believe that ME/CFS exists as a physiological illness.
An important question that presents itself is this. Why has this
AfME charity not commented on the development of the
Canadian Guidelines, Treatments, Definitions and Protocols far
and wide on behalf of the ME/CFS community? Is this not part
of its role and its duty to its members/subscribers?
Instead, AfME works with Professor Simon Wessely and the
psychiatric lobby in the UK in order to further psychologise the
physical illness ME to the detriment of all sufferers.
If there is no aetiological research, the only treatments available
will continue to be APT/CBT/GET. Is this the intention?
Furthermore, when Professor Malcolm Hooper, Emeritus
Professor of Medicinal Chemistry, who describes the horrors
done to seriously ill sufferers of the neurological disorder ME
(Myalgic Encephalomyelitis) published his recent paper entitled
"The Mental Health Movement : Persecution of Patients", Mr.
Clark, the CEO of AfME, actually denigrated this paper in public,
in contrast to the ME/CFS community, both national and
international, which greeted Professor Hooper's paper with
considerable gratitude and acclaim.
