ME UK scandal Cont/
continuing from Jan 17
ACT: Part 2/3: THE MENTAL HEALTH MOVEMENT: PERSECUTION OF PATIENTS?
Two illustrations of the implementation of Wessely School policy
Out of the many known cases of patients being persecuted as a result
of the implementation of Wessely's policy on ME, just two are
mentioned here: details of many others have been put before the
Chief Medical Officer, who has made it known that he receives more
letters about ME than on any other medical issue. There are
numerous records relating to this matter in Hansard (both Lords and
Commons) and on 23rd November 1999, the House of Commons Select
Committee on Health produced its Report looking at adverse clinical
incidents, unexpectedly poor outcomes to treatment, failures in
medical care and poorly-performing doctors: that Committee took
representations from at least eight people about ME.
1. The case of Ean Proctor
In 1988, a formerly healthy 12 year old boy named Ean Proctor from
the Isle of Man had been suffering from ME since the autumn of 1986;
his symptoms included total exhaustion, feeling extremely ill,
abdominal pain, persistent nausea, drenching sweats, headaches,
recurrent sore throat, heightened sensitivity to noise and light and
loss of balance; he was also dragging his right leg. In 1987 his
condition had rapidly deteriorated; he had gradually (not suddenly
as may occur in hysterical disorders) lost his speech and was almost
completely paralysed (which lasted for two years). He had been seen
by Dr Morgan-Hughes, a senior consultant neurologist at the National
Hospital in London, who had reaffirmed the diagnosis of ME and
advised the parents that ME patients usually respond poorly to
exercise until their muscle strength begins to improve; he also
advised that drugs could make the situation worse.
Although he did not obtain his MRCPsych until 1986, during one visit
by the Proctors to the National Hospital in 1988, Wessely (then a
Senior Registrar in Psychiatry) entered the room and asked Ean's
parents if he could become involved in his case; desperate for any
help, they readily agreed. Wessely soon informed them that children
do not get ME, and unknown to them, on 3 June 1988 he wrote to the
Principal Social Worker at Douglas, Isle of Man (Mrs Jean Manson)
that "Ean presented with a history of an ability (sic) to use any
muscle group which amounted to a paraplegia, together with elective
mutatism (sic). I did not perform a physical examination but was
told that there was no evidence of any physical pathology.I was in
no doubt that the primary problem was psychiatric (and) that his
apparent illness was out of all proportion to the original cause. I
feel that Ean's parents are very over involved in his care. I have
considerable experience in the subject of 'myalgic
encephalomyelitis' and am absolutely certain that it did not apply
to Ean. I feel that Ean needs a long period of rehabilitation
(which) will involve separation from his parents, providing an
escape from his "ill" world. For this reason, I support the
application made by your department for wardship".
On 10 June 1988 Wessely provided another report on Ean Proctor for
Messrs Simcocks & Co, Solicitors for the Child Care Department on
the Isle of Man. Although Wessely had never once interviewed or
examined the child, he wrote "I did not order any
investigations..Ean cannot be suffering from any primary organic
illness, be it myalgic encephalomyelitis or any other. Ean has a
primary psychological illness causing him to become mute and
immobile. Ean requires skilled rehabilitation to regain lost
function. I therefore support the efforts being made to ensure Ean
receives appropriate treatment". Under his signature, Wessely
wrote "Approved under Section 12, Mental Health Act 1983".
In that same month (June 1988), without ever having spoken to his
parents, social workers supported by psychiatrists and armed with a
Court Order specially signed by a magistrate on a Sunday, removed
the child under police presence from his distraught and disbelieving
parents and placed him into "care" because psychiatrists believed
his illness was psychological and was being maintained by an "over-
protective mother". Everything possible was done to censor
communication between the child and his parents, who did not even
know if their son knew why they were not allowed to visit him.
In this "care", the sick child was forcibly thrown into a hospital
swimming pool with no floating aids because psychiatrists wanted to
prove that he could use his limbs and that he would be forced to do
so to save himself from drowning. He could not save himself and
sank to the bottom of the pool. The terrified child was also
dragged out of the hospital ward and taken on a ghost train because
psychiatrists were determined to prove that he could speak and they
believed he would cry out in fear and panic and this would prove
them right. Another part of this "care" included keeping the boy
alone in a side-ward and leaving him intentionally unattended for
over seven hours at a time with no means of communication because
the call bell had been deliberately disconnected. The side-ward was
next to the lavatories and the staff believed he would take himself
to the lavatory when he was desperate enough. He was unable to do
so and wet himself but was left for many hours at a time sitting in
urine-soaked clothes in a wet chair. Another part of the "care"
involved the child being raced in his wheelchair up and down
corridors by a male nurse who would stop abruptly without warning,
supposedly to make the boy hold on to the chair sides to prevent
himself from being tipped out; he was unable to do so and was
projected out of the wheelchair onto the floor, which on one
occasion resulted in injury to his back. This was regarded as a
huge joke by the staff.
In a further medical report dated 5th August 1988 for Messrs
Simcocks, Wessely expressed a diametric opinion from that of Dr
Morgan-Hughes, writing: " A label does not matter so long as the
correct treatment is instituted. It may assist the Court to point
out that I am the co-author of several scientific papers concerning
the topic of "ME"..I have considerable experience of both (it) and
child and adult psychiatry (and) submit that mutism cannot occur (in
ME). I disagree that active rehabilitation should wait until
recovery has taken place, and submit that recovery will not occur
until such rehabilitation has commenced....it may help the Court to
emphasise that.active management, which takes both a physical and
psychological approach, is the most successful treatment available.
It is now in everyone's interests that rehabilitation proceeds as
quickly as possible. I am sure that everyone, including Ean, is now
anxious for a way out of this dilemma with dignity".
Ean Proctor was kept in "care" and away from his parents for over
five months.
Although this took place in 1988, such brutality is still happening
in the UK: the continued barbaric "treatment" of sick children by
certain psychiatrists who profess to specialise in ME was the
subject of a Panorama programme transmitted on 8th November 1999 and
was profoundly disturbing (a videotape recording is available).
Nothing seems to have been learnt from the appalling case of Ean
Proctor and there is no question that children with ME continue to
be forcibly removed from their parents and home; this issue was
raised by Dr Nigel Speight, a consultant paediatrician at the
University Hospital of North Durham with 20 years experience of
children with ME, who in April 1999 reported to the Chief Medical
Officer's Working Group on "CFS/ME" that the frequency of
psychiatrists diagnosing the parents of children with ME as having
Munchausen's Syndrome by Proxy now amounted to an epidemic. Jane
Colby, Executive Director of The Young ME Sufferers Trust (TYMES
Trust) says "To have your sick child taken from you, to be
suspected of damaging them yourself, just when they most need your
care, is an appalling experience".
2. The case of Child X: Some ten years after her own nightmare
experience, Mrs Proctor answered a knock at her door on the Isle of
Man and was surprised to find herself confronted by a police officer
who had been directed to question her by the Metropolitan Police.
Although at the time she did not know it, another child with ME in
southern England was being threatened with forcible removal from his
home if his parents did not agree to his being admitted to a
psychiatric hospital: in an effort to protect the child from
inappropriate treatment and medical harm, his father had
surreptitiously taken him abroad. When police officers broke into
the house, it seems they found Mrs Proctor's name and address and
she was therefore suspected of assisting the boy's parents in his
disappearance and of harbouring him, which was untrue. Believing
his son to be safe, the father returned to the UK where he was
arrested and sentenced to two years imprisonment, a sentence he was
happy to endure, thinking that his son was safe. However, the
child's mother was then targeted and threatened with imprisonment if
the boy was not handed over to a particular psychiatrist at a
Teaching Hospital. The physically sick child was forced to spend
seven months under the "care" of this psychiatrist and was subjected
to "active rehabilitation", during which time his condition
deteriorated considerably. He is now severely ill and terrified of
health professionals.
The lengths to which these psychiatrists who have focused their
careers on "eradicating ME" will go in order to obtain parental
obedience, and the control they wield, is extremely disquieting.
Professor Wessely, though, seems to be curiously affected by
elective amnesia over the compulsory removal of children with ME
from their parents: his involvement with the wardship of Ean Proctor
is incontrovertibly established, yet in a Channel 4 News programme
on 26th August 1998 in which the case of Child X was being
discussed, when asked by the presenter Sheena McDonald if there can
ever be a case for the coercive approach in situations involving
forcible removal of a child with ME from the parents, Wessely stated
(verbatim quote) "You know very well I know nothing about these
cases" and when Sheena McDonald asked "So you would agree that
unless there is criminal abuse, there is never a case for a coercive
approach to take children away from parents?", Wessely replied
(verbatim quote) "I think it's so rare. I mean, it's never happened
to me". Despite this denial on national television, there is
unequivocal evidence that Wessely had been personally involved in
Ean Proctor's wardship and that he had advised the local authorities
to take the action they did. (Copies of Wessely's letters and
reports and a videotape recording of the Channel 4 News item are
available).
The formal international classification of ME by the World Health
Organisation
Although formally classified by the World Health Organisation in the
International Classification of Diseases (ICD) as a neurological
disorder since 1969 (currently to be found at ICD-10: G93.3),
Wessely School psychiatrists have succeeded in a gradual but
consistent distortion of the clinical entity ME, by denying its very
existence and by subsuming it within the heterogeneous label
of "CFS". The term CFS was first coined in the US in 1988 and at
the time, it was indicated that it was intended to replace the older
term ME or to be considered equivalent to it, but Wessely School
psychiatrists have increasingly equated "CFS" with other chronic
fatigue states (especially neurasthenia) which are formally
classified in the ICD as Mental and Behavioural Disorders (ICD-10
F48.0).
It is important to be aware, however, that ME remains classified as
a neurological disorder in the ICD (with CFS listed as an
alternative term for ME) and that the WHO has confirmed it has no
plans to re-classify the condition as a psychiatric disorder.
Current Government policy concerning ME/CFS
Whereas the American Medical Association has issued a Statement
addressing the fact that basic laboratory tests are insufficient for
ME/CFS patients because it is known that routine screening is normal
in 90% of such patients and that more complex investigations (such
as immunological assays, nuclear medicine screening and gene
expression profiling) are essential to demonstrate the underlying
biological and physiological basis of ME/CFS, in the UK current and
future policy dictates the non-investigation of ME/CFS patients
other than by routine screening; it dictates that no special
provision or facilities other than psychiatric clinics need be
provided for the care of ME/CFS patients; it dictates that no
special training for doctors about the disorder is necessary; it
dictates the denial of appropriate medical care; it dictates that
there is no need for respite care (and commissioning officers are
advised accordingly); it dictates that State benefits for those with
ME be withdrawn unless patients agree to psychiatric intervention,
whereupon (as for all psychiatric disorders) a lower rate of benefit
is payable; it approves the use of Court Orders for the compulsory
removal from their home of both children and adults with ME under
the auspices of the Mental Health Act if patients decline
psychiatric intervention and it dictates that no biomedical research
is necessary into the disorder and that such research should not be
publicly funded by Government bodies.
What is ME and is it the same as Chronic Fatigue Syndrome (CFS)?
Myalgic Encephalomyelitis (ME): ME is not a new disorder; there are
many reports in the medical literature spanning at least 70 years
and in April 1978 the Royal Society of Medicine accepted ME as a
distinct entity. It is a serious and complex disorder which can
affect virtually every major system in the body, with neurological,
immunological, cardiovascular, respiratory, hormonal,
gastrointestinal and musculo-skeletal manifestations.
The cardinal features of ME are post-exertional muscle fatigability
(this bears no comparison with ordinary "tiredness" or "fatigue" or
TATT ("tired all the time", which is a feature of many psychiatric
disorders); profound malaise; intractable muscle pain in specific
groups of muscles (myalgia); variability of symptoms from day to day
and even from hour to hour, and chronicity.
Non-psychiatric research into ME is impressive. It is funded in the
UK almost entirely by small charities such as MERGE
(www.meresearch.org.uk) but not by the larger charity Action for ME,
which has now chosen to support Government policy and as a result
has received significant Government funding, This research deals
with scientific facts, not with beliefs, and there is an ever-
increasing body of evidence from international centres of excellence
of a variety of biomarkers for ME, some of the most significant
being inflammatory markers. The following evidence exists:
neurological deficits - these are demonstrated by nuclear medicine
techniques such as SPECT scans (single photon emission computed
tomography, a type of radionuclide scanning) and MRS scans (magnetic
resonance spectroscopy) which demonstrate cerebral hypo-perfusion,
and PET imaging (positron emission tomography) which shows brain
areas of hypo-metabolism
endocrine dysfunction - there is evidence of disturbance of the HPA
axis (hypothalamic-pituitary-adrenal axis) and of central adrenal
insufficiency, with evidence of an impaired stress response in that
both the right and left adrenal gland bodies are reduced by over
50%, indicative of significant adrenal atrophy
immune dysfunction - there is abundant evidence of an unusual and
inappropriate immune response, with evidence that changes in
different immunological parameters correlate with particular aspects
of disease symptomatology and with measures of disease severity
vascular disturbances - there are specific disturbances peculiar to
patients with ME/CFS, characterised in particular by orthostatic
intolerance (this is not the same as postural hypotension, stated by
some psychiatrists to be related to de-conditioning). There is
evidence of very extensive damage to the endothelium which lines all
blood vessels; it was found to be swollen and stiffened as a result
of severe damage: damage of this kind would compromise the blood
supply to the deep capillary beds in all tissues, including nerve
cells
mitochondrial abnormalities in muscle - there is convincing evidence
that ME/CFS patients reach exhaustion more rapidly than normal
subjects. The use of 31P NMR (31P nuclear magnetic resonance) has
now provided positive evidence of defective oxidative capacity:
oxidative activity involves production of ATP (adenosine
triphosphate, the main energy releasing source of the cell) which
can be seen and monitored in tissues. The findings show that there
is a continued loss of post-exertional muscle power (giving an
additional loss of power), with delayed recovery for at least 24
hours, whereas sedentary controls recovered full muscle power after
200 minutes. Further evidence shows that some ME/CFS patients have
persistent enterovirus within skeletal muscle tissue; these are also
findings consistent with delayed recovery of muscle power after
exertion.
There is also evidence of increased neutrophil apoptosis (programmed
cell death) in ME, whilst evidence of higher levels of TGF b1
(transfer growth factor beta 1), indicative of a persistent viral
infection or of a toxic state has been presented at international
conference proceedings on ME/CFS.
In health, the cells of endothelium that line every blood vessel of
every organ and which provide the all-important blood-brain barrier
have tight cell junctions that prevent many compounds from crossing
these membranes. Some chemicals are known to open these normally
tight cell junctions, allowing free transport of compounds that are
toxic to the central nervous system. When the gut wall, for
instance, has increased permeability, the opioid peptides
(casomorphin and gliadomorphin) which would normally be excluded are
absorbed into the blood stream, giving rise to diffuse
symptomatology and systemic dysfunction. Hypersensitivity reactions
are common in ME/CFS patients, especially to cow's milk and gluten,
as well as to many medicinal drugs, particularly to anti-
depressants. The compromised gut facilitates the development of a
gut dysbiosis which in turn can give rise to autoimmune disease,
with very significant and chronic damage to health.
Studies from both Israel and the US have shown that ME/CFS has
components of autoimmune disease: immunohistochemistry has shown a
high percentage of reactors in these patients as in patients with
lupus (another autoimmune disorder) which is a known overlap
condition.
Studies performed in the US on ME/CFS patients have shown prominent
RNA not observed in normal controls. RNA bands so far sequenced show
homology with human genes which are noted for their tendency for
gene rearrangement under severe physiological stress: environmental
stresses which researchers are investigating include the frequent
and well-documented linking of this disease with food and chemical
sensitivities. In the UK, a pilot study (funded by a small charity,
the CFS Research Foundation) has found changes in 50 or so genes in
patients with ME/CFS, from which it can definitely be concluded that
many of the genes that show up are involved with the immune system.
The exhaustion experienced by patients is extreme, being described
in the Journal of the American Medical Association in the following
terms: "The disabling weakness and exhaustion that a patient with
(ME) CFS experiences is so profound that "fatigue" is probably an
insult" (J. Cuozzo: JAMA 1989:261:5:697).
Other distressing symptoms commonly arising in the more severely
affected are:
? multi-systemic dysfunction including vertigo,
dysequilibrium and ataxia
? difficulty with swallowing (choking fits are not uncommon
and both adults and children may require tube-feeding) and voice
production (particularly if speaking is sustained)
? episodic cardiac pain indistinguishable from myocardial
infarction (heart attack) and segmental chest wall pain
? pancreatitis
? frequency of micturition, including nocturia (bladder and
bowel control may be insecure)
? pronounced vascular disturbance (leading for example to
an inability to use the fingers and to the "ME headache")
? inability to stand unsupported for more than a few
moments with the ability to walk only very short distances, requiring the
use of a wheelchair
? difficulty with simple tasks such as climbing stairs and
dressing
? difficulty with breathing, with sudden attacks of
breathlessness requiring the administration of oxygen (lung function
studies have demonstrated a significant reduction in all parameters
tested)
? in females, ovarian-uterine dysfunction is not uncommon,
whilst in males, prostatitis and impotence may occur
? cognitive impairment may be profound
? hair loss is a recognised and documented finding
? an adverse reaction to medicinal drugs, especially to
anaesthetics, is virtually pathognomonic.
American and Australian research has shown that the quality of life
in this disorder is lower than for any other chronic illness group
apart from terminal cancer and that the quality of life is uniquely
disrupted on all levels.
A major report by an ME charity (Severely Neglected: ME in the UK;
Action for ME, March 2001) found that 77% of sufferers experienced
severe pain; over 80% had felt suicidal as a result of the illness;
70% are either never able, or are sometimes too unwell, to be able
to attend a doctor's clinic; 65% (ie. nearly two out of three) have
received no advice from their GP on managing this illness; 80% of
those who are currently bed-ridden by ME report that a request for a
home visit by a doctor has been refused, and many people do not
receive the State benefits to which they are clearly entitled.
(This report is apparently no longer used by Action for ME, who have
seemingly now joined forces with the Wessely School in endorsing
psychiatric interventions).
Suicide rates are very high, not necessarily because patients are
psychiatrically disturbed, but because the unavoidable isolation and
the physical suffering are simply unbearable without adequate
support. The losses are many, including loss of career, loss of
marriage, loss of ability to be self-supporting and loss of
independence. Although frequently told that they do not look ill,
patients may be severely incapacitated and quite unable to fend for
themselves. Their suffering is compounded if, as is often the case,
their means of financial survival by way of State benefits is
withdrawn because of Wessely's dictum that ME is a "non-disease"
(see below). Many patients are simply too sick to be forced to
attend psychiatric units and to participate in
compulsory "management strategies" which involve exercising, but if
they fail to attend, they are deemed not to want to get better and
their State benefits are withdrawn because of Wessely's dogmatic
advice to Government that ME is nothing more than an "aberrant
illness belief". There are many such known cases, including those
in which ME patients have been threatened with being sectioned (ie.
compulsorily detained under the Mental Health Act) unless they
comply with psychotherapy.
In his Testimony before the US FDA Scientific Advisory Committee on
18th February 1993, Paul Cheney, Professor of Medicine and Director
of the Cheney Clinic, North Carolina and one of the world's leading
experts on ME/CFS, testified as follows:
"I have evaluated over 2,500 cases. At best, it is a prolonged post-
viral syndrome with slow recovery. At worst, it is a nightmare of
increasing disability with both physical and neuro-cognitive
components. The worst cases have both an MS-like and an AIDS-like
clinical appearance. We have lost five cases in the last six
months. The most difficult thing to treat is the severe pain. Half
have abnormal MRI scans. 80% have abnormal SPECT scans. 95% have
abnormal cognitive-evoked EEG brain maps. Most have abnormal
neurological examination. Most have evidence of T-cell activation.
80% have evidence of an up-regulated 2-5A antiviral pathway. 80% of
cases are unable to work or attend school. We admit regularly to
hospital with an inability to care for self".
In the February 2000 issue of the American Journal of Medicine,
Anthony Komaroff, Assistant Professor of Medicine at Harvard,
summarised key points in an Editorial:
"Many controlled studies have compared patients with age-matched and
gender-matched healthy control subjects. The evidence indicates
pathology of the central nervous system and the immune system.
There is considerable evidence from different investigators, using
different techniques and different groups of patients, of a state of
chronic immune activation. In summary, there is now considerable
evidence of an underlying biological process in most patients
(which) is inconsistent with the hypothesis that (the syndrome)
involves symptoms that are only imagined or amplified because of
underlying psychiatric distress. It is time to put that hypothesis
to rest".
As long ago as 1994, Professor Paul Levine from the US National
Cancer Institute stated "the spectrum of illnesses associated with a
dysregulated immune system must now include (ME)CFS" and the Centres
for Disease Control now take the disorder so seriously that it has
been designated a "serious legitimate diagnostic Priority One
disease of public health importance".
In the UK, the very existence of ME is denied: psychiatrist Simon
Wessely advises that ME is a "non-disease" and he has personally re-
classified CFS as a mental disorder in UK reference manuals (see
below). He asserts that the disorder exists only because
of "artefacts of medical specialisaton" and he advises that such
disorders "should not be dignified by their own formal case
definition and body of research" (Functional somatic syndromes: one
or many? S Wessely, C Nimnuan, M Sharpe Lancet 1999:354:936-939).
What is CFS?: In the 1980s in the US (where there is no NHS and
most of the costs of health care are borne by insurance companies),
the incidence of ME escalated rapidly, so a political decision was
taken to rename ME as "the chronic fatigue syndrome", the cardinal
feature of which was to be chronic or on-going "fatigue", a symptom
so universal that any insurance claim based on "tiredness" could be
expediently denied. The new case definition bore little relation to
ME: objections were raised by experienced international clinicians
and medical scientists, but all objections were ignored. In 1991 in
the UK, Wessely and Sharpe were amongst a group which produced their
own criteria for "CFS" and this definition became known as the
Oxford criteria. In 1994 these same psychiatrists were instrumental
in yet another revision of the criteria known as the CDC or the
Fukuda criteria because they were produced under the auspices the US
Centres for Disease Control. Of great significance is the fact that
both the Oxford and the CDC criteria specifically include
psychiatric conditions which are known to feature
prolonged "fatigue" or "tiredness" and, crucially, they specifically
exclude all physical signs from the case definition of CFS,
including the signs of neurological disease which had been noted in
the ME medical literature for many years. Thus the quite specific
neuro-immunological disease ME became subsumed within the
heterogeneous label of "CFS".
This marked a turning point in the "eradication" of ME by
psychiatrists and of the campaign to designate CFS as a "mental"
disorder.
Are both camps studying the same disorder?
Disconcertingly, the editors of both the CMO's Report of January
2002 and the Medical Research Council's subsequent document setting
out its preferred strategy for the direction of future research
in "CFS/ME" (released on 1st May 2003, the editor being Dr Chris
Watkins, whose position at the time was MRC Programme Manager for
Research on Mental Illness) persistently refused to heed repeated
calls for accuracy: when draft copies of both Reports were studied,
the same important error appeared in both documents and was pointed
out but was deliberately retained in the final version of both
reports. That error relates to the classification of ME and of CFS
in the ICD and it reads:
"Currently, CFS and ME are classified as distinct illnesses in the
World Health Organisation's International Classification of
Diseases" (CMO's Report 2002:1.4.1).
As this error was pointed out to the editors of both reports long
before they were published, it cannot have been an over-sight that
the error appeared in the final versions of the reports and it may
well have been expedience on the part of the Wessely School
psychiatrists who dominated both reports (see below).
This error is easily shown to be erroneous: CFS is clearly listed at
G93.3 as a term by which ME is also known, whilst other syndromes of
chronic fatigue are listed under Mental and Behavioural Disorders at
F48.0, a category from which ME/CFS is expressly excluded by the
WHO. Moreover, the WHO has confirmed that it is "unacceptable" for
the same disorder to be classified in two different places and does
not accept this to have occurred.
It is necessary to be aware that the patients studied by Wessely are
largely obtained from either his own 1991 Oxford criteria or from
the 1994 CDC criteria which he helped to develop, neither of which
selects those with ME.
It is increasingly accepted that it is inappropriate to synthesize
results from studies of this illness which use different definitions
to select study populations (A Comparison of Diagnostic Criteria.
Jason et al: Evaluation and the Health Professions: in press
December 2003), but Wessely is well-known for using the
terms "fatigue"; "chronic fatigue"; "CFS" and "ME" interchangeably,
even though they may represent totally different patient
populations. He has been stringently criticised for this in, for
example, the Quarterly Journal of Medicine (QJM 1997:90:723-727),
where Hedrick succinctly pointed out his mischaracterisation of the
facts and noted that it is unacceptable for him to summarise a wide
variety of studies, in this case drawing conclusions across seven
studies which were based on different patient populations -- from
simple fatigue of 30 days to severe chronic fatigue of decades -
without addressing the adequacy of the analysis performed. (In his
article, Wessely even left out findings from cited studies which did
not support his own pre-determined conclusions). To quote
Hedrick: "Studies and review articles on psychiatric factors and
CFS need to be subject to the same standards of scientific inquiry
as studies investigating organic factors, lest the theoretical
stance of the researchers / authors turns out to be the most
powerful predictor of results".
Wessely is always at pains to point out that only "patients" refer
to the disorder as ME and that those with superior knowledge (ie.
doctors) refer to it as "CFS".
Until the issue of case definition is accurately addressed and is
beyond doubt, it seems to serve Wessely's purpose very well indeed
to ensure that clinical obfuscation continues to abound around ME
and CFS.
The published views of the Wessely School on ME
Wessely continues to be overtly patronising in his encounters with
ME/CFS patients whilst continuing to mock and denigrate them in
print and in his behaviour with his colleagues, where those with ME
are the subject of his ill-concealed ridicule and contempt, as
exemplified when he gave the 9th Eliot Slater Memorial Lecture at
the IOP on 12th May 1994 (of which an audiotape recording exists).
The title of his lecture was revealing: "Microbes, Mental Illness,
The Media, and ME: the Construction of Disease".
The sheer cumulative extent of Wessely's denigration of ME patients
as set out in his published works over 16 years has to be read for
oneself to be believed.
For convenience, attached as an appendix to this document is a short
compilation of referenced quotations from the published works on
ME/CFS of both Simon Wessely and Michael Sharpe, which speak for
themselves.
Extracts from many of Wessely's published papers from 1987 to 1999
have been compiled in two spiral-bound volumes for ease of access
and are available at cost price on request (see Further Reading).
Wessely is well-known for his published views on ME. One of the
best known dates from 1993 when, together with Anthony David, he
wrote in the Lancet (Lancet 1993:342:1247-1248) in unmistakable
terms: "The inclusion in the tenth revision of the ICD of benign
myalgic encephalomyelitis under Diseases of the Nervous System seems
to represent an important moral victory for the self-help groups in
the UK (but) neurasthenia remains in the Mental and Behavioural
Disorders chapter under Other Neurotic Disorders. Neurasthenia
would readily suffice for ME. Applying more stringent criteria for
CFS in the hope of revealing a more neurological sub-group succeeds
only in strengthening the association with psychiatric disorders".
What is strange is that the authors seemed not to know that in 1993,
ME had already been classified under Diseases of the Nervous System
for almost a quarter of a century.
Wessely believes that "There lies at the heart of CFS, not a virus
or immune disorder, but a distortion of the doctor-patient
relationship" (Chronic fatigue syndrome: an update. Anthony J
Cleare Simon C Wessely. Update 14th August 1996:61-69).
In another paper, Wessely claims that ME exists "only because well-
meaning doctors have not learnt to deal effectively with suggestible
patients" (Psychological Medicine 1990:20:35-53).
Wessely concluded his major Review of the Post-viral Fatigue
Syndrome (yet another ICD term for ME/CFS) in the prestigious
British Medical Bulletin by citing medical comments on patients
between 1880 and 1908, with the clear implication that such
descriptions apply equally well to today's ME sufferers: "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" (BMB
1991:47:4:919-941).
In one medical textbook, Wessely wrote about ME/CFS patients
that "the description given by a leading (doctor) at the Mayo Clinic
remains accurate: 'the doctor will see that they are neurotic and he
will often be disgusted with them' " (Chronic fatigue and myalgia
syndromes. Wessely S. In: Psychological Disorders in General
Medical Practice. eds: N Sartorius et al Hogrefe & Huber 1990)
In relation to patients with ME/CFS in a paper on "medically
unexplained symptoms", Wessely states " Patients with functional
somatic symptoms are generally viewed as an unavoidable, untreatable
and unattractive burden" (Patients with medically unexplained
symptoms. Alcuin Wilkie Simon Wessely. British Journal of Hospital
Medicine 1994:51:8:421-427).
Such has been Wessely's "help" to ME/CFS patients over the last
sixteen years of almost supreme reign over their fate that they are
frequently abused by busy physicians whose views are based upon the
misinformation with which they have been targeted and bombarded by
the journals and the medical trade press (over which Wessely exerts
so much editorial control) to the virtual exclusion of opposing
views. Busy practising clinicians rarely have time to study the
international medical literature which presents a very different
picture.
Wessely's own literature output is prodigious; he has authored well
over 200 papers, so it is necessary to be aware that a database
search on "ME/CFS" is dominated by his publications and that he
promotes himself as a world expert in "medically unexplained
symptoms", a category in which he and his adherents firmly
place "CFS"; it is easy, therefore, for the uninformed and
disinterested to be misled about what is actually known and
published in (non-UK) peer-reviewed journals about ME/CFS.
Wessely does not hesitate to refer to himself as a medico-legal
expert, in one instance claiming "I frequently act on behalf of
CFS/ME sufferers in their dealings with insurers (see below for his
involvement with insurance companies) and the courts ---indeed, I
was the principal expert witness in two recent medico-legal cases
concerning CFS. In the first, the sufferer was awarded #160,000
and
the second #320,000. These are the only two cases of their kind
in
the UK". The published response pointed out that in the two cases
to which Wessely referred, he was one of three medical expert
witnesses in both cases and the #320,000 was an out of court
settlement. The #162,000 was awarded in the High Court in December
1992 but was withdrawn by three appeal court judges who accepted
Wessely's testimony that the plaintiff (a diagnosed ME sufferer)
was "suffering from at least some degree of psychological disorder",
evidence which was given without Wessely ever having examined the
appellant. In claiming that there were only two such cases in the
UK, Wessely was misleading, to say the least: in reality, at that
time seven similar cases either had been or were going through the
British legal system. (CFIDS Chronicle Spring 1994:14-18 and Summer
1994:77-79).
Wessely is ceaseless in his efforts to discredit ME and its hapless
sufferers: in early 2002, at his instigation the British Medical
Journal ran a ballot asking doctors to vote on which diseases they
considered to be "non-diseases" which are best left medically
untreated: Wessely proposed ME. Along with ear-wax accumulation,
nail-chewing and freckles, ME was voted a non-disease, and in April
2002 both broadsheet and tabloid newspapers ran banner headlines
proclaiming "Obesity and ME are not diseases, say doctors". He
appears indifferent to the fact that the stigma of having a "non-
disease" could not fail to make things worse for sufferers;
certainly it is the case that since the BMJ poll, many more ME
patients have been removed without notice from their GP's list, in
one specific case, a very sick ME patient was brusquely informed
that "This practice does not treat non-diseases".
As a direct result, an unknown number of ME patients are simply left
to suffer and die at home without any medical care or support.
Illustrations of Wessely's influence over the national perception of
ME/CFS
The WHO Guide to Mental Health in Primary Care: Wessely's
determination to eradicate ME as a legitimate medical disorder seems
never to cease. In 1997 he deliberately included ME in the WHO
Guide to Mental Health in Primary Care. This Guide, available to
all GPs in the UK, was produced by the UK WHO Collaborating Centre
at the IOP, so it legitimately bore the WHO logo. However,
Wessely's covert re-classification of ME was effected without the
approval of the World Health Assembly and the WHO has confirmed in
writing that what Wessely published about the classification of ME
in the UK Guide to Mental Health in Primary Care did not carry WHO
approval, stating: "It is possible that one of the WHO Collaborating
Centres in the UK presented a view that is at variance with WHO's
position". When on 18th August 2003 the Countess of Mar wrote to
Wessely's Dean at the Institute of Psychiatry (Professor George
Szmukler) raising concerns about the erroneous inclusion of ME as a
mental disorder, his reply of 27th August 2003 failed to address the
issues raised and instead consisted of a paean of praise for
Wessely, describing him as "one of the most outstanding medical
researchers in the UK, and indeed internationally (and he) has been
awarded a Research Medal by the Royal College of Physicians
(specifically for work on CFS). The Institute of Psychiatry has
every reason to have confidence in the quality and integrity of
Professor Wessely's research". It later transpired that the Dean
had co-edited a psychiatric text book with Wessely's wife, also a
psychiatrist and a Senior Policy Adviser to the Department of Health.
The NHS Information Authority (NHSIA): this is a body which was set
up in 1999 to disseminate approved information throughout the NHS.
The fact that the WHO so unequivocally distanced itself from the UK
Guide to Mental Health in Primary Care did not prevent Government
Ministers and the NHSIA from relying upon the Guide in their own
database of mental disorders, both as a source of information from
Ministers to Members of Parliament and also for distribution
throughout the entire NHS, with dire results for ME sufferers. In
various letters to MPs, the Parliamentary Under Secretary of State
for Health (Stephen Ladyman MP) refers to the UK Guide to Mental
Health in Primary Care as "the WHO Guide", mistakenly conveying the
notion that he was referring to a Guide produced by the WHO itself
in Geneva (whereas he ought to have been referring to the UK WHO
Collaborating Centre at the IOP) and stating about the
Guide "Although WHO were initially keen to use the
term 'neurasthenia', they eventually decided to call the
section "Chronic Fatigue and Chronic Fatigue Syndrome (may be
referred to as ME)". In one letter dated 29th August 2003, Stephen
Ladyman provided false information for Dr Liam Fox MP, erroneously
stating that the current version of the ICD classified CFS in two
different places: "as Neurasthenia / Fatigue Syndrome in the mental
health chapter (F48.0) and as Post Viral Fatigue Syndrome / Benign
Myalgic Encephalomyelitis in the neurology chapter (G93.3)". This is
quite unacceptable, because, as mentioned above, the WHO itself has
confirmed that this is not the case, and that ME/CFS is expressly
excluded from F48.0. It took until 2003 before "patient power"
finally succeeded in securing an erratum on the website of the Royal
Society of Medicine (publishers of the Guide) but to date (December
2003), the NHSIA has still not corrected its website and continues
to classify ME/CFS as a mental disorder.
The House of Commons Library: it is known that MPs are provided
only with information on ME/CFS which endorses a psychiatric
aetiology, in particular with a Research Paper prepared for MPs by
Dr Alex Sleator of the Science and Environment Section of the House
of Commons Library (98/107, December 1998) which is simply a re-hash
of the discredited Joint Royal Colleges' Report of 1996 (see
below). Many letters exist from MPs which testify to this. This is
despite the fact that medical textbooks, papers, journals and
international conference reports which demonstrate an organic basis
for the disorder are known to have been placed in the House of
Commons Library for the use of MPs. It has been ascertained that
the information supporting an organic basis has been removed to the
Library archives, so unless an MP was sufficiently well informed to
know what s/he was asking for by name, it is difficult for them to
access such material.
The Official Secrets Act: During the life (1998-2002) of the Chief
Medical Officer's Working Group on ME/CFS, members were ordered not
to discuss the deliberations and were even threatened with the
Official Secrets Act (documents available). If the psychiatric
lobby which dominated that Working Group is so confident that they
are right, why the need to force the suppression of opposing views
by resorting to threats of prosecution under the Official Secrets
Act in a Working Group that had nothing to do with State security
but was supposed to be acting simply in the best interests of sick
people? This is in marked contrast to the "Key working principles"
set out in the first Briefing Note of March 1999, which states "The
Group must have maximum 'transparency' ie. as much information about
its activities to be distributed as possible to all potential
interested parties".
The Media: The UK national newspapers frequently run headlines such
as "ME's mainly in the mind---Study reveals yuppie flu can be cured
by positive thinking" (Daily Express, 5th January 1996, about one of
Mike Sharpe's studies) and "ME is just a myth, sufferers told"
(Sunday Telegraph, 20th November 1994, about the conclusions of 150
British psychiatrists attending a pharmaceutical conference in
Jersey). On 5th May 1996 the Daily Express carried an article by
Jonathan Miller from America, which ran with the headline "Chronic
Bandwagon Disease" in which he referred to CFS as "Completely
Fictitious Syndrome".
Medical Trade Journals: The medical trade magazines (widely
distributed free to doctors, especially to GPs and to hospital
libraries by the drug companies) have made a point of promoting
psychiatric interventions for those with "CFS" and of mocking and
denigrating sufferers from ME/CFS in a way they would not dare do
about patients with multiple sclerosis or other neurological
disorders, yet ME is formally classified by the WHO as a
neurological disorder. For example, on 1st April 1994 "GP Medicine"
carried a bold banner headline proclaiming "GPs despise the ME
generation"; on 12th January 1995 "Doctor" magazine ran a feature
called "Bluffer's Guide" by Dr Douglas Carnall, in which he
wrote "Modern bluffers prefer the term chronic fatigue syndrome..if
they really insist on a physical diagnosis tell them chronic fatigue
syndrome is a complex disorder in which multiple biopsychosocial
factors are mediated via the anterior hypothalamus ---in other
words, it's all in the mind. Or, if you're feeling tired, you could
always refer"; "Doctor" magazine also ran a quiz by Dr Tony
Copperfield (known to be the pseudonym of a GP in Essex) in which
GPs were asked to choose from four possible answers to the
question "What would be your initial response to a patient
presenting with a self-diagnosis of ME?" The correct answer
was "For God's sake pull yourself together, you piece of pond
life". One of the worst and most damaging examples was published on
20th October 2001 in "Pulse" in a series called "Choices for the
new generation of GPs". The item on which three GPs provided their
approach was entitled "ME patient with litigation history demands
inappropriate therapy" and the approach provided by Dr Mary Church
(this is her real name: she is a Principal in a practice in
Blantyre, Scotland and most disturbingly of all, she is a member of
the British Medical Association medical ethics committee) was
particularly contemptuous but is not untypical: "Never let patients
know you think ME doesn't exist and is a disease of malingerers.
Never advise an ME patient to make a review appointment. At the end
of the consultation, I say goodbye, not au revoir. Always refer ME
patients to a local expert. It's a wonderful way of passing the
buck". Although some of these items are doubtless intended to be
amusing, it is not appropriate for a doctor to write with such
contempt about any illness, physical or psychiatric, which ruins
lives and quite frequently causes death, and these items are
damaging because they lend credence to what many doctors privately
admit they still believe (ie. Wessely's view that ME does not exist
and that "CFS" is a psychiatric disorder).
Disgraceful treatment of ME patients: On Sunday 15th June 2003,
Clare White, a woman in her early 60s (a graduate who taught French
during her professional academic career but who has been severely
affected by ME for many years) was taken ill: being unable to
contact her GP (because the surgery had only an answering machine
telling patients to telephone NHS-Direct) she was forced to
telephone 999 for an ambulance. She was taken to the A & E
Department of a flagship London hospital in great distress,
suffering from acute renal colic and vomiting. On arrival she was
seen by a very helpful, polite, considerate and conscientious junior
doctor who examined her and found that she had many abnormalities,
including blood in her urine. He asked her if she had any other
diagnosis, so she told him she suffered from ME. He started to
organise various investigations, including an IVP (intravenous
pyelogram), informing her of what was proposed. The woman then
heard him discussing her case with a more senior colleague just
outside her cubicle and was dismayed to hear the senior doctor
instruct the junior doctor to do nothing because ME was
a "personality" problem which did not need further investigation.
She definitely heard this said very clearly. The junior doctor
repeated forcefully that the abnormalities he had found had nothing
to do with ME and that she needed investigating. The two doctors
had a heated argument, the outcome being that the junior doctor,
although clearly very angry, was pressurised into not investigating
further. In her own words, "a stop was put on the works". To his
credit, the junior doctor, who was visibly uncomfortable, arranged a
wheelchair and ambulance transport for the woman to be taken home.
She lives alone and has no-one to look after her. The pain has now
spread to the bladder region but she is receiving no medical care
and no social support. No-one wants to know and no-one cares.
Medical Insurance: In December 2003 a professional woman telephoned
SAGA with a view to taking out private health insurance; she was
asked if she suffered from any chronic physical disorder, to which
she replied that she suffered from ME. The reflex response of the
clerk was "Oh, that's not a physical disorder".
Illustrations of Wessely's influence over the international
perception of ME/CFS
Wessely's influence is not restricted to the UK; of many available,
just two illustrations (one from Australia and New Zealand and one
from Canada) are presented here.
The Australian CFS Report 2002 (Chronic fatigue syndrome: Clinical
practice guidelines ---2002. Report of a Working Group convened
under the auspices of the Royal Australasian College of Physicians.
Medical Journal of Australia 2002:176: S17-S55). This Report
virtually echoed the UK Joint Royal Colleges' Report of 1996 and was
comprehensively condemned as seriously flawed. One typical review
is that of Dr Abhijit Chaudhuri, DM, MD, MRCP(UK), Clinical Senior
Lecturer in Neurology, University of Glasgow and Consultant
Neurologist who specialises in ME/CFS: "This document contains many
flawed statements and observations (and) the accounts appear biased
and inaccurate. I have deep concerns about the selectivity of the
literature review. The document has over-emphasised the behavioural
model and has failed to review the appropriate literature on the
neurology. The paper has devoted much of its clinical discussion on
the comparison of psychiatric disorders with CFS. The quality of
references and review on the neurological aspect of CFS is very
poor, with omissions of research carried out by international groups
in the past three or four years. The cited references show a skewed
representation of a group of psychiatrists. The guidelines show a
preference for cognitive behaviour therapy and graded exercise
therapy and ignore criticisms and the flawed designs of the trials
upon which their success has been claimed. Many areas of the text
appear highly opinionated in favour of the psycho-behavioural model
of CFS. The document cannot be recommended since it does not
reflect the cumulative base of knowledge on CFS".
Notwithstanding intense international criticism, it was this same
Australian Report that formed the basis of the MRC's 2003 Report on
the direction of future research in ME/CFS from its Research
Advisory Group (see below).
A Canadian reference book: Whiplash and Other Useful Illnesses (a
medico-legal reference book by Andrew Malleson, published in 2003 by
McGill-Queen's University Press, Montreal and London). This
supposed reference book is one of the worst in existence and is a
shameful display of ignorance on the part of its author. He cites
Wessely in his references and in the chapter headed "Finessing
Whiplash: Copycats and Fashionable Illnesses" vents his undisguised
venom on ME/CFS patients :
"Somatizers had dropped neurasthenia like a hot brick, Fatigued
somatizers needed a new diagnosis (so) they developed "chronic
fatigue syndrome" (CFS) in North America and "myalgic
encephalomyelitis" (ME) in the United Kingdom. Chronic fatigue
syndrome has gone from strength to strength. In Britain in the mid
1950s, an apparent viral illness featuring muscle pains and severe
fatigue hit 292 members of the staff at the Royal Free Hospital in
London. The illness was well-publicized by the media and, in a
familiar pattern, people all over the country soon came down with
it; many are still doing so. The Royal Free epidemic was first
christened "encephalomyelitis" but because no-one died, the illness
was re-named "benign myalgic encephalomyelitis". Its victims soon
dropped the "benign" so the condition is now known simply
as "myalgic encephalomyelitis". Shorter comments "The disease label
alone was a triumph of the longing for organicity over science".
At the end of the 1980s, conventional medicine focused on the
acquired immunodeficiency syndrome of AIDS. AIDS left its victims
in a chronic state of exhaustion. In the typical way that
fashionable illnesses have of acquiring serious-sounding pathology,
CFS quickly incorporated this concept. The chronically fatigued
promptly renamed their illness "chronic fatigue and immune
dysfunction syndrome (CFIDS), a condition satisfactorily endowed
with all the pathological glamour of AIDS, but respectable. From
the medico-legal point of view (lists produced by itemizers of
symptoms) are a goldmine. They provide lawyers with symptoms over
which they can litigate and healthcare practitioners with the
ability to charge insurance companies for treating practically any
symptoms of which a patient might choose to complain. Victims of CFS
and ME, like the neurasthenics before them, are mostly young to
middle-aged women from the middle and professional classes.
Epidemics of ME, CFS (and) environmental hypersensitivity do not
occur in the industrially underdeveloped countries. Fashions and
affluence go together. Before the days of the welfare state, only
the well-off could afford a fashionable illness, although as
sickness benefits and compensation payments have made the luxury of
pseudo-illnesses more accessible, these illnesses have trickled down
the social pyramid. I have used the word "victim" to designate the
sufferers of fashionable illnesses. I have done so deliberately,
because these sufferers are quick to adopt the victim role. They
often see themselves being harmed by members of the medical
profession who inflexibly refuse to recognize the validity of their
suffering. As well-educated members of the middle and professional
classes, these victims are often vocal advocates for their own
anguish. Despite their fatigue, literate victims of fashionable
illnesses have displayed inexhaustible energy writing, arranging
meetings and proselytising on behalf of their particular fashionable
illness. Victims aim much of their copious literature at the
unbelieving doctors and their callous disregard for such illnesses
(because) in order to provide compensation or support, insurance
companies and government social services require medical validation
of the illness. Some doctors, perhaps out of a sense of scientific
integrity, out of bloody-mindedness, or even, as the claimants for
fashionable illnesses sometimes maintain, because of payments from
insurance companies, refuse to validate these pseudo-illnesses.
Responsible members of the medical profession have difficulty
providing authentication when no evidence of any disability exists".
Andrew Malleson was born and brought up in England but is now a
psychiatrist with Toronto University Health Network; he is also
psychiatric consultant to the Canadian Government Occupational
Health and Safety Agency; his particular interest is in the uses and
abuses of illness, especially illnesses that are intentionally or
unconsciously feigned. He has done medico-legal work for the last
15 years.
Malleson seems entirely unaware of a well-recognised problem in
modern medicine, namely, that medicine does not listen to patients
any more, nor does it pay any regard to symptoms: it only respects
laboratory results. Clinical practice (the very foundation of
medicine) is now ignored. In a nutshell, there is a current
misconception that evidence-based medicine means laboratory-based
medicine, wherein objective clinical observation is accorded lower
evidential weight than laboratory measurements. If no cutting-edge
laboratory investigations are to be permitted (as is currently the
case for ME/CFS patients), then the politically desired status quo
will prevail and the advancement of medical science will continue to
be actively obstructed by corporate control.
Tactics of denial
It is not only upon ME/CFS patients that Wessely School
psychiatrists seek to impose their preferred but unproven
psychotherapy regimes; other related conditions for which these
particular psychiatrists promote their own regime include almost any
syndrome for which medicine does not yet have an explanation of the
exact, confirmed pathoaetiology, for example, fibromyalgia, multiple
chemical sensitivity, chronic low-dose organophosphate poisoning,
Gulf War syndrome, pre-menstrual tension, irritable bowel syndrome,
and atypical chest pain. Psychiatrists of the Wessely School deny
the physical reality of all these conditions, asserting that they
are all one and the same psychiatric condition. (In the case of
irritable bowel syndrome (IBS), it has now been shown not to be
a "psychological" disorder at all: American researchers have
demonstrated molecular alterations in serotonin signalling in the
gastro-intestinal tract and that IBS is caused by altered gut
biochemistry).
In relation to Gulf War syndrome, Wessely claims that Gulf War
veterans have a three-fold increase in somatoform disorders: despite
the fact that in the UK alone, over 500 formerly healthy, tough
young men have died, Wessely denies the existence of any such
syndrome and has advised the Ministry of Defence that one of the
biggest risk factors for a soldier to develop ill-health following
deployment to the Gulf is the fact that s/he knows another deployed
person who has developed a similar illness.
Denial of the known and available evidence
Denial of existing evidence is currently popular by those who see
themselves as "revisionists", and such people are extremely
dangerous, as they seem to believe that they and their like-minded
colleagues alone have the prerogative to define reality.
On 29th April 2000 Channel Four transmitted a programme
entitled "Denying the Holocaust" which revealed the tactics used
by "deniers" of the truth (in that case, the reality of the
Holocaust).
Whilst in no way comparing the suffering and atrocities imposed upon
Holocaust victims with the suffering imposed upon those with ME/CFS
by doctors who do not believe in it, it may nevertheless be salutary
to examine the similarities in the tactics and methods used
by "deniers" and "revisionists" of whatever discipline.
Referring to David Irving (the subject of the lengthy legal action
involving Penguin Books and Professor Deborah Lipstadt, who was also
the subject of the programme). Lipstadt branded Irving "one of the
most dangerous of the men who call themselves revisionists". The
narrator said "familiar with (the).evidence, he bends it until it
conforms to his ideological leanings and political agenda".
Such allegations have been made about Wessely in relation to what he
publishes about ME/CFS.
Tactics used by "deniers" were identified in the programme as
including the following:
manipulation, distortion, deliberately portraying things differently
from what is known, falsifying facts, invention, misquotation,
suppression, illegitimate interpretation, political re-modelling,
exploiting public ignorance and intimidation.
Deniers take liberties with facts, and what is omitted is often more
significant than what is included.
A falsifier uses many different means but all these techniques have
the same effect ---falsification of the truth and denial of reality.
Other tactics include the following :
a.. deniers aggressively challenge others' views, claiming that
others have no proof, and challenge them to validate the established
facts and to produce proof to standards specified by the deniers
themselves but to which they do not require their own "evidence" to
subscribe
o deniers claim that "pressure groups" are active against them and
are attacking both them and the truth
o deniers claim that there are "orchestrated campaigns" against
them
o deniers agree, prepare and organise as a matter of policy a
systematic strategy amongst themselves
o deniers show a readiness to jump to conclusions on every occasion
o deniers endeavour to rationalise their own ideology and for
their own ideological reasons they persistently and deliberately
misrepresent and manipulate the established evidence
o deniers fly in the face of the available evidence
o deniers engage in "complete deniability" which has nothing to do
with genuine scholarly research.
Tactics of denial used in relation to ME/CFS as a physical disorder
Revisionism and denying known evidence in medicine is nowhere more
apparent than in the case of ME/CFS, and the choice of Government
medical advisers is a matter of great economic impact.
To policy makers and physicians in a cash-strapped NHS, the
advantages of denial must seem attractive. The last thing needed is
a disease which threatens the health of hundreds of thousands if not
millions world-wide, so accepting advice which promotes the view
that the condition in question is neither new nor particularly
disabling (and that the disorder is largely self-perpetuated) makes
instant economic sense, especially if the advice also recommends
that granting state benefits to those affected would be not only
inappropriate but counter-productive.
In ME/CFS, denial is directed at undermining the experience and
expertise of doctors who hold different views from Wessely School
psychiatrists.
In medicine, denial ought to be very rare due to the peer-review
system, but in the case of ME/CFS, many peer-reviewers and editors
of journals appear to share the same views as the deniers, so that
articles and research papers which show a lack of objectivity and
which misrepresent the existing literature and which make
unsubstantiated claims abound, with the consequence that readers are
deliberately misled.
In the UK ME/CFS literature (mostly as a result of the assiduous
activities of psychiatrists of the Wessely School), there is
evidence of a systematic attempt to deny the severity of the
symptoms, the role of external causes and the nature of the
illness. Such is the profundity of articles, reports and research
papers produced by this group of psychiatrists that there is now a
widespread belief that ME/CFS is not a disorder which requires money
to be spent on specialist tests or on expensive virological or
immunological research, let alone on long-term sickness benefits.
It may be informative to compare the tactics of denial listed above
as identified in the TV programme with a selection of methods and
tactics used by those engaged in denial activity relating to ME:
o Deniers consistently ignore existing evidence which contradicts
their own preferred theories: they disregard evidence, they
misconstrue findings, they distort figures and they speculate.
o Deniers apply a double standard to the evidence --- they support
their own claims with a select choice of studies, with flawed
research (ie. with research which has been shown to be flawed in the
medical literature), and with a mass of generalisations, whilst
insisting that the opposition provides irrefutable proof. These
authors down-play and attempt to overlook inconsistencies in their
own research.
o Deniers challenge the expertise of those with whom they
disagree, implying that their own claims are based on balanced
scientific scholarship whilst those of others are based only on myth.
o Deniers portray sufferers as victimisers, claiming that it is
patients who are guilty of targetting psychiatrists; who then
portray themselves as the vulnerable and wronged group. There is
reference to "vicious campaigns" organised by "pressure groups" and
to unreasoned hostility on the part of the patients.
o Deniers minimise or trivialise the distress and suffering of
those with ME/CFS, alleging that patients exaggerate their symptoms
and suffering.
o Deniers promote the view that patients have only themselves to
blame, and that the problem is therefore not external but internal.
o Deniers often include a totally reasonable and uncontroversial
supposition, (for instance, that decisions must be based upon the
best evidence), which gives the impression that their other
arguments must be equally reasonable and valid.
o Deniers often suggest or imply that patients are motivated by
financial or secondary gain (even though there is not a shred of
evidence to support such a claim), and that their claims for state
benefits are unjustified.
o Any negative characteristics of a minority of patients are
typically generalised and ascribed to all ME/CFS patients, without
any supportive evidence.
o Deniers suggest or imply that patients have formidable powers,
for instance that they are able to influence certain institutions;
that they get the media on their side and even that they have
managed to influence the World Health Organisation. It is also
alleged that patients use such tactics to misrepresent the situation
to lead others astray.
o Deniers even re-write medical history and alter it so that it
appears to support their own claims (this is certainly demonstrable
in the psychiatric interpretation of the ME literature).
o Deniers may attempt to rename or reclassify the condition (for
example claiming it as a modern form of an old (psychiatric)
illness).
o Deniers make inappropriate comparisons between syndromes,
suggesting that they are all simply the same (psychiatric) syndrome,
ignoring or downplaying any specific and / or unusual features which
are present.
In the case of ME/CFS, it seems apparent that the tactics of denial
which were exposed in the Channel Four programme mentioned above are
indeed being implemented by the psychiatrists of the Wessely School;
out of the many available illustrations, just the following are
provided:
o On 25th April 2000, Dr Michael Sharpe of Edinburgh wrote a
letter to Mrs Ann Crocker in which he stated "I understand your
desire to have the condition classified as a Neurological Disorder
(but) trying to change doctor's (sic) behaviour by altering
classification probably will not work and might even provoke a
paradoxical response". The reality is that ME is already formally
classified by the World Health Organisation in the ICD as a
neurological disorder, and it is Wessely School psychiatrists (not
patients) who are actively trying to "alter the classification" from
neurological to psychiatric.
o On 18th January 2000 Simon Wessely wrote to the Countess of Mar
that the "ad hominen (sic) attacks" upon him "may have the unforseen
outcome of re-inforcing unhelpful stereotypes of sufferers held by
some in high office". Again, this seems to be nothing less than a
threat, with the use of an intimidation technique made, it must
never be forgotten, to very sick human beings who have been trying
since Wessely came to such prominence in 1987 to redress the wrongs
perpetrated upon them by these powerful medical deniers.
o In the Joint Royal Colleges' Report on CFS (see below), the
authors mention a paper by Buchwald, Gallo and Komaroff et al
(reference 128 in the Joint Report) but dismiss it, stating "White
matter abnormalities occur in a number of settings and their
significance remains to be determined", whereas the paper itself
concludes that patients with ME/CFS "may have been experiencing a
chronic, immunologically mediated inflammatory process of the
central nervous system" and that the MRI scans revealed a punctate,
subcortical area of high signal intensity consistent with oedema or
demyelination in 78% of cases. This is a clear illustration of the
biased and misleading personal interpretation of the available
evidence by Wessely School psychiatrists.
o Also in the Joint Royal Colleges' Report, the authors mention a
paper by Bombadier and Buchwald (reference 173 in the Report) and
convey that this paper supports their own stance, whereas the paper
itself actually contradicts the Joint Report and clearly
states "The fact that the same prognostic indicators were not valid
for the group with CFS challenges the assumption that previous
outcome research on chronic fatigue is generalizable to patients
with chronic fatigue syndrome".
o Another illustration is found in the Joint Royal Colleges'
Report: the authors rely on a paper by Sandman et al (reference 163
in the Joint Report) in apparent support of their own view that the
results of neuropsychological testing have been inconsistent, but
the paper in fact concludes "the performance of the CFIDS patients
was sevenfold worse than either the control or the depressed group.
These results indicated that the memory deficit in CFIDS was more
severe than assumed by the CDC criteria. A pattern emerged of brain
behaviour relationships supporting neurological compromise in (ME)
CFS". One would never know this from the way the authors of the
Joint Royal Colleges' Report deliberately downplayed, misrepresented
and manipulated the references which they cited in supposed support
of their own views.
The Joint Royal Colleges' Report on CFS, October 1996
Like its successors from the same stable (the CMO's Working Group
Report of January 2002 and the MRC's Strategy document of May 2003 -
see below), this Report erroneously refers to CFS as being
classified by the WHO in the ICD under "Mental and Behavioural
Disorders" (F48.0), whereas in fact CFS is one of the terms by which
ME is listed and is classified under Diseases of the Nervous System
at G93.3.
It is worth noting that out of the 15 medical members of the joint
working group, 12 were committed adherents of the Wessely School
well-known for their entrenched views on ME/CFS, illustrations of
which include the following:
Anthony David: "Doctor behaviour, such as sick certification,
emerged as a significant contributor to the risk of chronic
fatigue" (Predictors of chronic "postviral" fatigue. Lancet
1994:344:864-868).
Sean Lynch: "The original criteria for the chronic fatigue syndrome
would exclude patients with any concurrent psychiatric symptoms, but
as few patients would then meet this definition, these criteria were
widened to include psychiatric morbidity" (Antidepressant therapy
in the chronic fatigue syndrome. British Journal of General Practice
1991:41:339-342).
Anthony Pelosi: "The myalgic encephalomyelitis societies should not
try to set the research agenda or shout down views with which they
disagree" (Chronic fatigue syndrome and myalgic encephalomyelitis.
BMJ 1994:309:276), It seems to be perfectly acceptable for
psychiatrists to set the research agenda and to shout down views
with which they disagree,
It is enlightening to compare Wessely School views as set out in the
Joint Royal Colleges' Report on CFS (CR54) of October 1996 (known to
have been dominated by Wessely) with an American Report of the same
time (Chronic Fatigue Syndrome: Information for Physicians. NIH
Public Health Services, US Department of Health and Human Services,
September 1996).
For example, with regard to children, the American Report states on
page 7 that it advocates a "supportive approach" but the UK Report
states that children may need to be forcibly removed from their
parents, stating "CFS in children covers a broad spectrum of
problems, even Munchausen's by Proxy Syndrome" (10.2).
The American Report states on page 8 that "the physician should
work with the school to limit class time, if necessary, and to
resume school attendance gradually", but the UK Report urges "an
immediate return to school" (10.12).
The American Report advises "Home tuition may be an alternative"
but the UK Report states "School phobia is important as a
complication of CFS" (10.8) and "We discourage home tuition" (10.12).
The American Report points out (on page 3) that "It is important to
note that about 40% of carefully evaluated CFS patients do not have
depression or other psychiatric illness", but the UK Report asserts
that 75% of all CFS patients do have psychiatric illness (Summary
for commissioners, page 45).
The American Report states (on page 3) that "some studies have found
a significantly greater prevalence of allergy in CFS patients (and)
patients report a worsening of allergic symptoms or the onset of new
allergies after becoming ill with CFS"; on page 9 it refers to "the
high prevalence of allergies in the CFS population", but the UK
Report describes CFS patients who have "food allergies (or) chemical
sensitivities" as fulfilling the criteria for somatisation disorder
(7.9); significantly, the authors refer to "food allergy" in
inverted commas, thereby indicating their disdainful non-acceptance
of food allergy as legitimate.
The UK Report authors are adamant that "We see no need for the
creation of specialist units" (12.1); that "We do not think that
specific guidelines on the management of CFS should be issued for
general practitioners" (12.4) and that "In CFS, the greater the
number of somatic symptoms, the greater the probability of
psychiatric disorder" (7.11)
The UK Report authors are unequivocal that "there is no
justification" for the use of neuroimaging studies
because 'abnormalities' require careful interpretation (and may be)
of little consequence" (7.13); this might be compared with what the
foremost UK researcher in nuclear medicine, Dr DC Costa of UCL
Medical School, believes about the abnormalities found in ME, namely
that the hypo-perfusion of the mid-brain seen in ME is more severe
than in AIDS encephalitis, or indeed in any other brain disease he
has examined since 1985.
The UK Report authors specifically advise against looking at
immunological parameters since "revealed changes (are) rarely
substantial" (8.9), and in their Summary for commissioners they
conclude that "No investigations should be performed to confirm the
diagnosis".
Predictably, the authors state that the "aims of assessment"
should "elicit the beliefs and fears of patient and family (and)
identify psychological distress" (8.12).
The UK Report authors state "We have concerns about the dangers of
labelling someone with an ill-defined condition which may be
associated with unhelpful illness beliefs" (9.2): ME is classified
by the WHO as a neurological disorder, so it is hardly an "unhelpful
illness belief" as these psychiatrists claim it to be.
The American Report states on page 6 that "Patients with CFS should
be treated with compassion", but the message of the UK Report is
clear --- ME does not exist; CFS patients must not be gratified on
any level and their aberrant beliefs that they are physically sick
must be corrected by compulsory psychotherapy.
Of note is that out of the 256 cited references, almost half were by
the same or associated group of authors and included nine which had
not been published or reviewed.
Requests that the flawed Joint Royal Colleges' Report be withdrawn
were made at the highest level but were refused. The damage done by
the Joint Royal Colleges' Report is still reverberating on the UK ME
community, but it is notable that at a "CFS" event at the Royal
College of Physicians in January 2003, the current President
(Professor Carol Black) indicated that more had been learnt since
the publication of the Joint Report. Informed attendees refrained
from pointing out that much had been learnt long before the 1996
Joint Report was published but that the available knowledge base was
comprehensively rejected by the report's authors.
Cont/ Jan 19
Posted by peter200015
at 12:36 AM EAST
Updated: Saturday, 7 August 2004 2:52 PM EADT
