Disturbing evidence exists that the
charity Action for ME (AfME) seems to be strengthening its links
to the insurance industry, which may be to the potential
detriment of people with ME/CFS (whose best interests the
charity is required by The Charity Commission to represent).
1. The
appointment of Alan Cook CBE as Chairman of AfME
On 8th
February 2010 AfME announced that Alan Cook CBE was the
charity’s new Chairman. Sir Peter Spencer, CEO of AfME, said: “It’s
great news that Alan is coming on board to contribute his
experience to this forward thinking organisation. We will
benefit hugely as he extends his fantastic track record for
achieving success in all that he does”.
Alan Cook also
happens to be Chairman of the insurance group that includes
Irish Life & Permanent Group Holdings plc.
An Occupational
Health doctor who works for Irish Life is Dr Deidre Gleeson, and
there is mounting evidence that she is recommending termination
of benefit payments to Irish Life policy holders with severe
ME/CFS who make claims on their income protection policies
because they are simply unable to work.
Can AfME not
comprehend that it is not appropriate for it to have a Chairman
with such an obvious conflict of interest, whose company is
responsible for denying insurance benefits to people with
ME/CFS?
For AfME to be
so closely linked to the insurance industry that has done so
much harm to people with a devastating multi-system disorder
must surely be a matter of concern.
2. Allen &
Overy LLP
AfME has
announced that it is to hold its Annual General Meeting and Open
Conference on 22nd October 2011, and that this will
take places at the London offices of the law firm Allen & Overy
LLP.
Allen & Overy is
an international law firm that claims insurance law as one of
its areas of expertise: “Our International Insurance
Group…advises many of the world’s leading insurers (and)
financial institutions….The group consists of lawyers with
specialist insurance expertise, some of whom have spent part of
their careers in the industry or with insurance regulators. This
practical industry experience ensures that we are able to
provide commercially driven legal advice. Our insurance lawyers
work…with specialists from other market leading practices, such
as corporate, capital markets, banking (and) litigation….As a
result, our clients receive the best possible technical and
commercial legal advice at both a domestic and international
level….Practices within Insurance (include) Insurance advice for
corporates (and) Insurance disputes”.
3. Professor
Michael Sharpe
Although not listed publicly, it is a
matter of record that the charity secured the services of
psychiatrist Professor Michael Sharpe as a medical advisor, and
that he is deeply involved with the insurance industry
(particularly with UNUMProvident) in the dismissal of income
protection claims submitted by people with ME/CFS.
In February 2000 a Conference on
Insurance Medicine was held at The Royal College of Physicians
in London, attended by Professors Simon Wessely and Michael
Sharpe, at which it is believed Sharpe advised that he was
recommending to insurance companies that claimants with ME/CFS
should be subject to covert video surveillance.
On 9th May 2001 Michael Sharpe
appeared before the Cross Party Group on ME of Members of the
Scottish Parliament in Edinburgh, where he informed the meeting
that the disorder is not a neurological disorder.
Despite denials from Professor Sharpe
that he has ever harmed “CFS” patients, there is evidence that
such may not be the case; documented and detailed evidence of
the consequences of inappropriate psychiatric intervention has
been put before the Chief Medical Officer and is also variously
recorded in Hansard. Patients with ME/CFS have been threatened
with being sectioned under the Mental Health Act unless they
agree to psychiatric interventions, and other kinds of harm
include the refusal and/or withdrawal of state benefits;
difficulty amounting to the impossibility of obtaining insurance
payments, with policy holders being refused benefits; the
withdrawal of cover by private health companies for those with
ME/CFS (often on the grounds that no cover is available for
‘psychiatric’ illness); an almost total lack of suitable
provision or care by the NHS, with no facilities for specialist
referral other than to a psychiatrist; an overtly hostile and
unfavourable attitude being shown by doctors and other health
professionals to those with ME/CFS and special problems for
children and adolescents, with increasing numbers of young
people being threatened with being removed from their parents
and put into care (which has led to litigation).
Perhaps a unique form of harm is to be
found in the persistent recommendation by Wessely School
psychiatrists that no investigations (or only limited
investigations) are necessary and appropriate in patients with
ME/CFS. Why are these psychiatrists so insistent that patients
should not be medically investigated? As the Countess of Mar
asked, where is their natural curiosity about this condition?
Why should sufferers and those doctors who observe their
suffering accept the limitations of scientific knowledge? These
psychiatrists refer to a lack of proven causality, yet they
actively advise that no investigations should be performed on
patients with ME/CFS and that no research into its organic
nature should be undertaken. Is it because they do not wish to
know? (Hansard, Lords, 19 December 1998:1011-1024).
AfME must surely be aware that Sharpe was
one of the authors of the 1994 (CDC) Fukuda case definition and
that the 1994 CDC case definition was unambiguous:
“The use of tests to diagnose the
chronic fatigue syndrome should be done only in the setting of
protocol-based research. In clinical practice, no additional
tests, including laboratory tests and neuro-imaging studies, can
be recommended. Examples of specific tests (which should not be
done) include serologic tests for enteroviruses; tests of
immunologic function, and imaging studies, including magnetic
resonance imaging scans and radionuclide scans (such as single
photon emission computed tomography (SPECT) and positron
emission tomography (PET) of the head. We consider a mental
status examination to be the minimal acceptable level of
assessment” (Ann Int Med 1994:121:12:953-959).
Professor Sharpe was one of the Principal
Investigators of the notorious PACE Trial, and AfME was
intimately involved with that trial and with the production of
the Manuals used in the trial.
It may be recalled that AfME received
substantial Section 64 funding (Health Services Act 1968) in
return for supporting Department of Health policy priorities
(which currently include managing “CFS/ME” as a behavioural
disorder).
AfME members and those who fund-raise for
it may wish to consider in whose best interest the charity is
acting.
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