Observer Article on Professor Wessely:
Professor Hooper’s Response
by Malcolm Hooper
25th August 2011
right-minded person could condone any campaign of vilification against
scientists (“Chronic fatigue syndrome researchers face death threats from
militants”; The Observer, Sunday 21st August 2011); equally, no
right-minded person could condone what psychiatrists such as Professor Wessely
have done to the UK ME community for the last 25 years.
what the degree of provocation, it is indefensible to liken people with myalgic
encephalomyelitis (ME) to the Animal Liberation Front extremists. This will
create a further tidal wave of loathing against them. It is an inexcusable
attack on the whole ME community, not just on those few people who may have
behaved irrationally. It might be thought that, of all people, psychiatrists
would know how to recognise and deal with unbalanced behaviour instead of
says he is concerned that such behaviour is putting off researchers but it is he
who is putting them off by his endless purveying of so much negative publicity
about people with ME. He perpetuates the dismissive, often contemptuous,
attitude of many healthcare professionals toward those with the disease.
problem is that although these scientists claim to be studying patients with ME,
they are studying people with chronic “fatigue” (ie. chronic tiredness) but then
claiming that their results apply to those with ME; this has resulted in a lack
of appropriate NHS medical services for those with ME and in incalculable harm
and distress to patients and their desperate families.
though the World Health Organisation has classified ME as a neurological
disorder since 1969, the Wessely School teaches that it is not a neurological
but a psychosocial (behavioural) disorder.
about 250,000 ME patients in the UK. By comparison, there are about 83,000
people in the UK suffering from multiple sclerosis, yet the far larger numbers
of ME patients coping with an equally serious neurological disorder are not only
denied both medical and social support but are ridiculed, mocked, disbelieved,
derided and abused by those charged with their medical and social care.
Greensmith noted in a letter to The Scotsman (when Wessely was making the same
claims of vilification by patients seven years ago):
is deplorable if he has been so treated, no matter how controversial his views.
It is instructive, however, to examine how Professor Wessely has raised passions
to this level of fervour by, perhaps, more than any other single individual,
being responsible for making the area as controversial as it is”.
been a constant drip-feed of denigration of patients with ME and a dismissal of
ME as an organic disease over the last quarter of a century by Professors Simon
Wessely, Michael Sharpe and Peter White; they all belong to a group dominated by
psychiatrists (named in Hansard in December 1998 as the “Wessely School”).
them work for the medical and permanent health insurance industry. The industry
is panicking because it stands to lose millions if it has to pay out for a
severe life-long physical illness whose worldwide incidence appears to be
escalating out of control. In 1994, Wessely went on record about the industry’s
concerns: “By 1990 insurance and disability claims (for ME) were
doubling every year”.
There is plentiful written evidence that the Wessely
School advise their insurance industry paymasters that ME is a “functional” (ie.
non-organic) disorder, which is to the financial advantage of the industry, as
functional disorders are excluded from cover.
and his colleagues are also advisors on ME to Government Departments of State
(and Wessely’s wife is Chair of the Royal College of General Practitioners); as
a result, people with ME are specifically targeted by the Department for Work
and Pensions, making it difficult for them to claim State benefits, with the
financial support necessary for basic survival being ruthlessly withdrawn. Many
very sick and destitute ME patients have had no alternative but to commit
suicide, rates of which in ME are known to be higher than average (sadly, a fact
does little to mitigate the charge that they were “mental malingerers”).
Wessely School’s blatant financial conflict of interest has been roundly
condemned by a group of senior parliamentarians including the
former Chairman of a House of Commons Science and Technology Select Committee
and former Dean of Biology; a member of the Home Affairs Select Committee; a
Minister of State for the Environment; a former President of the Royal College
of Physicians; the Deputy Speaker of the House of Lords, and a former Health
Minister and Honorary Fellow of the Royal College of Physicians.
Wessely School’s endless assertions that ME does not exist except as an aberrant
illness belief by those who are seeking secondary gain (an assertion for which
there is not a shred of evidence, as the many doctors, nurses, medical
scientists, lawyers, teachers, and others who have lost their valued careers,
salaries, homes, marriages and even families because of ME will readily confirm)
has created a climate of disgust for patients with ME, giving rise to such
banner headlines as “GPs despise the ME generation” published in the
medical trade magazine “GP Medicine”. Since the 1980s, they have made a point of
mocking and denigrating sufferers from ME in a way they would not dare do about
patients with multiple sclerosis or other neurological disorders and this has
been fed to and reflected in the national media.
Wessely School insist that they can cure ME by “cognitive restructuring” (ie.
brain-washing patients into believing that they do not suffer from an organic
illness but from wrong illness beliefs) and by forcing them to ignore their
symptoms and engage in a programme of incremental exercise (one MP suffering
from ME collapsed and died leaving the House of Commons gym, having been told to
exercise back to fitness).
ME is a
chronic, acquired neuroimmune disorder that affects every bodily system, not
only the neurological and immune systems but also the endocrine, cardiovascular
and respiratory systems as well as the musculoskeletal and gastrointestinal
evidence of widespread, chronic inflammation and of serious problems with the
blood vessels in both adults and children.
muscles of people with ME have been shown to take much longer to recover from
minimal exercise. Direct impairments in oxygen delivery have been clearly
demonstrated. Cardiac output in ME patients has been shown to barely meet
metabolic demand, so it is no wonder that patients feel – and are – extremely
ill, with profound incapacity and nausea; many patients cannot stand unsupported
and often have difficulty maintaining their balance.
more abnormal genes in ME than in cancer: there is compelling evidence linking
ME with exposure to environmental toxins and chemical warfare agents. Gene
expression research has demonstrated 16 genes as having an expression profile
associated with ME.
Genes affecting the immune system and the functioning of
muscles have been shown to be abnormal. A neuronal component was identified that
is associated with hypomyelination of the central nervous system. The
researchers specifically pointed out the association of organophosphates (which
include household pesticides) and chemical warfare agents with the damaged
after one of the researchers who discovered these acquired (not inherited) gene
abnormalities in ME, Dr Jonathan Kerr, publicly criticised the psychiatrists who
control funding for ME research at the Medical Research Council, he lost his
tenure and his contract was not renewed.
He was not
hounded out of his research by patients with ME, but by those whose mission
seemed to be to ensure that his voice was silenced, leaving the way open for
more dismissal and disparagement of those battling a devastating disease.
At a press
briefing in the United States on 3rd November 2006, ME was described
by Anthony Komaroff, Professor of Medicine at Harvard and a world-renowned ME
expert as “this terrible illness”.
from ME and UK coroners have recorded it as a cause of death.
from autopsies of ME patients is chilling: there is evidence of oedema,
inflammation in 75% of the spinal cord, damaged arteries, congestion of the
liver and spleen, ischaemia of the bowel, rhabdomyolysis (the breakdown of
muscle fibres with release of muscle fibre contents into the circulation, some
of which are toxic to the kidney), and degeneration of the brain.
Director of one US support foundation commented:
“Every time you look
closely at someone with this disease, you see immense suffering. There appears
to be no limit as to the human toll that this disease is capable of exerting on
when in 2002 the UK Chief Medical Officer publicly stated that ME should be
recognised alongside disorders such as multiple sclerosis and motor neurone
disease, the British Medical Journal quoted Professor Michael Sharpe responding
by saying that just because the CMO says something, it doesn’t mean that doctors
will pay any attention.
The Wessely School’s published
views about people with ME
about 1987 the Wessely School have consistently rejected the biomedical evidence
of serious organic pathology in ME.
Wessely asserted that ME exists
“only because well-meaning doctors have not
learnt to deal effectively with suggestible patients”.
year he wrote in a medical textbook:
description given by a leading gastroenterologist at the Mayo Clinic
remains accurate: ‘The average doctor will see they are neurotic and
he will often be disgusted with them’ ”
he cited medical comments made between 1880 and 1908 on patients with
neurasthenia, with the clear implication that such descriptions apply equally
well to today’s ME patients:
“always ailing, seldom ill; a useless, noxious
element of society; purely mental cases; laziness, weakness of mind and
supersensitiveness characterises them all; the terror of the busy physician”.
the Wessely School directed that in patients with ME, the first duty of the
doctor is to avoid legitimisation of symptoms; that same year, Wessely went on
record about his intention to “eradicate” ME.
In 1994 ME
was described by Wessely as merely “a belief” and a “myth” (“I
will argue that ME is simply a belief, the belief that one has an illness called
ME……I will argue that this line here(pointing to a slide) represents…the
line between real and unreal illness”) and he openly named and mocked a
seriously ill ME patient in a lecture; that person is now dead.
under the guise of a Report from the Joint Royal Colleges of Physicians,
Psychiatrists and General Practitioners, the Wessely School recommended that no
investigations should be performed to confirm the diagnosis. (This advice to
doctors was re-stated in the 2007 NICE Clinical Guideline on “CFS/ME” in which
the Wessely School were instrumental. This means that investigations such as
acomprehensive immune profile cannot be ordered in the UK -- even though one
specific immune test always corresponds to disease severity in ME patients --
nor can patients be sent for fMRI scans that show clear evidence of
hypoperfusion in the brain, nor can doctors request SPECT scans that show
reduced blood flow through the brain stem in ME patients in a particular pattern
that to date has not been found in any other disease process).
Professor Michael Sharpe referred to ME as a “pseudo-disease diagnosis”.
Sharpe said about ME patients:
February and April 2002 Wessely was involved with a poll of “non-diseases”
carried out amongst doctors by the British Medical Journal: along with big ears
and freckles, the poll found ME to be a non-disease that is best left medically
untreated. As a result, patients with ME were struck off their GP’s list, one
extremely sick person being told scathingly “This
practice does not treat non-existent diseases”.
who want or need to find out about the published organic pathology in ME, a
summary of the biomedical abnormalities can found in Section 2 of “Magical
Medicine: How to Make a Disease Disappear” (see
and those who want a fully referenced account of what the Wessely School and the
insurance industry are really up to can read the rest of the 442 page report.
Wessely School’s dismissal and rejection of the biomedical evidence on ME has
continued unabated. It was not the fact that UK scientists such as Professor
Myra McClure failed to find evidence of the retrovirus XMRV found in ME patients
by US researchers that caused such an eruption of anger within the ME community:
it was the utterly triumphant and contemptuous comments of certain of those
scientists whose studies failed to replicate the original XMRV study published
in Science (2009:326:585-589) that so incensed some people with ME and the
medical scientists and clinicians who are striving to help them.
with ME know what Wessely really thinks about them, as his published views leave
no room for doubt or conjecture (for illustrations of his descriptions of ME/CFS
patients, see “Quotable Quotes about ME/CFS”: Quotable
Quotes on ME).
of the Wessely School about ME have repeatedly been shown by medical scientists
of international repute to be completely wrong: the recently published
International Consensus Criteria for ME produced by 26 world experts from 13
countries points to widespread inflammation and multisystemic neuropathology,
consistent with the WHO classification of ME as a neurological disorder, of
which the cardinal symptom is post-exertional nalaise.
The authors state:
encephalomyelitis (ME), also referred to in the literature as chronic fatigue
syndrome, is a complex disease involving profound dysregulation of the central
nervous system and immune system, dysfunction of cellular energy metabolism and
ion transport and cardiovascular abnormalities. The underlying pathophysiology
produces measureable abnormalities in physical and cognitive function and
provides a basis for understanding the symptomatology.”
astonishing is that no NHS clinician has the autonomy to regard ME as a
somatoform disorder because the WHO classifies it as a neurological disorder;
the Department of Health has confirmed in writing that: “The ICD-10 is an NHS
Information Standard….The NHS has a long history of using the ICD. There is a
legal obligation for Department of Health to provide ICD data to the WHO for
international comparison. The NHS was mandated to implement ICD-10 on 1 April
1995, at which time there was a formal consultation (emphasis added)….Implementation…applies
to NHS organisations and their system suppliers, such as acute and foundation
trusts, primary care trusts, and the NHS Information Centre”.
the Wessely School themselves but also many GPs and NHS neurologists are in
breach of that mandate: in 2010, 84% of neurologists questioned stated that
they do not believe that ME exists as a neurological condition.
Who is abusing whom?
Wessely School to ignore the scientific evidence that ME is a biomedical
disorder is abusive of patients with the disorder; for them to advise the DWP
decision-makers and to train ATOS examiners that ME is a mental disorder is
abusive; to section patients with ME and remove them from their distraught
families is abusive; to make sick people worse by inappropriate interventions is
abusive; to deny them financial support necessary to survive is abusive; to mock
them and to misinform others about their serious disorder is abusive; to insist
that they suffer from wrong thinking and a fear of activity when they suffer
from a very serious and significant medical disorder with reproducible multiple
systemic abnormalities is abusive.
widespread abuse of ME patients continues unabated in the UK.
McKie implies that it is these scientists themselves who are being abused by the
very patients they are trying to help. If this is true – and if it is
corroborated by the police and is not another public attack on people with ME so
often used by the Wessely School in the past when yet more research appears that
vitiates their own beliefs -- it is an entirely unacceptable state of affairs
and must be condemned without reservation.
responsible journalists should exercise the requisite journalistic neutrality
when reporting a “story” and report the whole issue, not just regurgitate
uncritically what they are fed by those with well-established vested interests.
McKie would do well to redress the balance by reporting the presentation by
Catriona Courtier at the Royal Society of Medicine meeting in the “Medicine and
me” series on 11th July 2009 in which she emphasised the scandalous
situation faced by ME patients in the UK:
“Over the twenty years I have had this illness, what has really bedevilled the
situation of patients with ME has been the belief, which has been persistently
promulgated, that we are suffering, not from a physical illness but from an
illness belief. This is at the root of all the problems we experience: the lack
of resources, the hostility and disbelief from some doctors, the ignorance and
disinterest in our symptoms, the ineffective treatments, the harmful treatments
and in the very worst cases, the imposition of psychiatric treatment against the
“Those who promulgate the view that ME is an illness belief have undermined the
mutual trust and respect that should exist between doctor and patient. They have
done a great disservice to both patients and to the medical profession.
began by describing the severely affected as the weakest among us. In some ways
they are the strongest… to live for many years with an illness like ME is a huge
feat of human endurance and courage but is seldom recognised as such. People
with ME at all levels deserve to be respected. They deserve to be listened to”.
patients with ME continue to be neither listened to, appropriately investigated
nor correctly cared for but abused and effectively abandoned is believed by many
to be the shameful legacy of the Wessely School.
1. All the
above statements can be substantiated by literature references.
2. Much other
information has been omitted purely for reasons of space; there are many
harrowing stories, as documented by Natalie Boulton in her book “Lost Voices”
Invest in ME) and her DVD “Voices from the Shadows” that is to be shown at an international
film festival in the autumn.
SUNDERLAND SR2 3SD