Professor Simon Wessely has recently published his own account
of his involvement since the late 1980s with what he refers to
as Chronic Fatigue Syndrome but does not clarify that he and his
colleagues regard CFS as synonymous with ME and that they regard
– and treat—it as a behavioural disorder (“CFS Personal Story”:
simonwessely.com/faq.html).
His story as published on his new website makes a smooth and
impressive read, at least for the uninitiated, as it refers to
numerous biomedical studies with which Wessely says he was
involved during his “CFS” career.
What he fails to make clear is the number of those biomedical
studies that had negative findings, or that he uses the Oxford
case definition that specifically excludes those with a
neurological disorder such as ME, so he may be studying only
those with unexplained “fatigue”.
Equally, he claims “considerable success” with cognitive
behavioural therapy but again he does not explain the cardinal
importance of case definition.
Wessely states that he is “proud” of having contributed
to neuroendocrine studies and seems to be claiming the honour
for having discovered HPA axis dysfunction in “CFS”, whereas
this was first demonstrated by Mark Demitrack in the US (Journal
of Clinical Endocrinology and Metabolism 1991:73:6:1224-1234;
Biol Psychiatry 1992:32:1065-1077).
Wessely specifically
mentions Professor Tony Cleare (a member of Wessely’s group) and
his work on neuroendocrine aspects of CFS, but does not explain
that Cleare regards the disorder as being “most likely of
biopsychosocial origin”, concluding that there is “no
evidence for a specific or uniform dysfunction of the HPA axis”
and that confounding factors such as inactivity and
psychiatric comorbidity may influence the observed endocrine
changes (Endocrine Reviews 2003:24:236-252). Cleare is also on
record as stating that “HPA axis changes can be reversed by
modifying behavioural features of the illness, such as
inactivity (and) deconditioning” and that “current
evidence suggests that neuroendocrine changes are not a central
core of the condition, but occur…at least partly as a response
to certain features of the illness such as …physical
deconditioning” (TRENDS in Endocrinology and Metabolism
2004:15:2).
Notably, Wessely fails to report his own view on the
cortisol abnormality: -
“I will argue that this line here
represents not the line between low and high cortisol
responses…but the line between real and unreal illness”
-
Simon Wessely - Microbes, Mental illness, the Media and ME: The Construction of Disease; 9th Eliot Slater lecture given at The Institute of Psychiatry, 12th May 1994 |
Wessely mentions the immunological studies with which he has
been involved, but again he does not explain that his group
failed to find the immunological abnormalities documented by
experts such as Professor Nancy Klimas, nor that he argues
against immunological testing, for example:
“Though disordered
immunity and persisting viral infection have recently attracted
attention, it is important that immunologists do not deflect
attention away from the wider
(ie. psychiatric)
aspects of the chronic fatigue/postviral syndrome” (Anthony
David, Simon Wessely, Anthony Pelosi. Lancet 1988: July 9th:
100-101). |
Notably, in his “CFS Personal Story” Wessely says:
“We
showed that immune dysfunction didn’t relate to clinical
outcomes” but experts have found the exact opposite, for
example: “We demonstrated changes in different immunological
parameters, each of which correlated with particular aspects of
disease symptomatology” (Hassan I, Weir WRC et al. Clin
Immunol & Immunopathol 1998:87:1:60-67); “The findings
suggest that the degree of cellular immune activation is
associated with severity of physical symptoms”
(Immunological Status Correlates with Severity of Physical
Symptoms in Chronic Fatigue Syndrome Patients. S Wagner, N
Klimas et al; Fourth International AACFS Research & Clinical
Conference 1998; abstract page 28) and “Among (ME)CFS
subjects, those who had been sick longer had higher rates of
autoantibodies” (S Vernon et al. Journal of Autoimmune
Diseases 2005: May 25th: 2:5). |
Wessely mentions his work looking at HLA phenotypes but does not
reveal that his team found no association with any specific
phenotype,
whereas others have shown direct linkage:
“A significant
association between CFIDS and the presence of HLA-DQ3 was
noted” (RH Keller, N Klimas et al. Clin Inf Dis 1994:18:
(Suppl 1): S154-S156) and “The frequency of the HLA-DQ1
antigen was increased in patients compared to controls. This
association between (ME)CFS and the HLA-DQ1 antigen translates
into a relative risk of 3.2” (RS Schacterle, Anthony L
Komaroff et al. JCFS 2004:11(4):33-42). |
Wessely also fails to mention that in the 1996 Joint Royal
Colleges’ Report on CFS his advice to Government bodies was that
the reported biomedical abnormalities “should not deflect the
clinician away from the biopsychosocial approach and should not
focus attention towards a search for an ‘organic’ cause”, or
his recommendation that no advanced tests should be carried out
on these patients when it is those very tests that reveal the
organic nature of the disorder (Joint Royal Colleges’ Report
1996: CR54).
He refers to his work on vitamin levels without mentioning his
disparaging dismissal of vitamin supplementation or his
unsupported conclusion that “many” people with “CFS” are taking
vitamin B supplementation with no evidence of benefit (JRSM
1999:92:183-185).
Wessely concedes that he has changed his “writing style”
but does not appear to comprehend the extent to which his
earlier published views are perceived almost universally as
being denigratory and sometimes mocking (as is to be found, for
example, in the audiotape and his own notes for his 1994 Eliot
Slater lecture), nor does he mention the harm in the form of
medical rejection and dismissal, as well as the financial
hardship, that have resulted from the widespread adoption of his
views by the medical fraternity, government departments and
private health insurers.
Indeed, he entirely fails to mention his published views, for
example:
“neurasthenia would readily suffice for ME”; “It
seems that ME sufferers prefer to feel that they
have a ‘real’ disease – it is better for their
self-esteem”; “many patients
become…over-sensitised to physical sensations”;
“Blaming symptoms on a viral infection conveys
certain advantages, irrespective of its validity…It
is also beneficial to self-esteem by protecting the
individual from guilt and blame”; that patients
obtain “secondary gain” by “adopting the
sick role”; that “fear of illness is an
important part of (the disorder)”; that patients
are not suffering from any organic disorder because
he believes their symptoms have no anatomical or
physiological basis; that “The term ME may
mislead patients into believing they have a serious
and specific pathological process” and that “Several
studies
(often Wessely’s own) suggest that poor outcome is
associated with social, psychological and cultural
factors”. |
Wessely says in his account of his involvement with “CFS”:
“I
remain proud of the work myself and colleagues did in the early
days of CFS…But there has been a downside”, and here he
appears to seek sympathy from his readers by referring to
alleged threats made to him by “activists”. |
He continues:
“Right from the start, myself and all my
colleagues had from the start (sic) been targeted by a
small group of activists who (sic) mission was, and still
is, to impede our work in as much as they are able. Thankfully…
they haven’t succeeded and won’t”.
|
He goes on to say:
"I do not blame those who repeat some of
the things they have read about me.. I feel however differently
towards those who originally extracted or altered the
quotes, and persist in doing so over the years despite knowing
that these are wrong”. |
No, Professor Wessely: responsible people who quote your
published or recorded spoken words can readily demonstrate that
these are not wrong.
He continues:
“So next time you come across something that
purports to be an unfavourable or unflattering quote from myself
or one of my colleagues, make sure you check it out first with
the actual article”. |
For those who wish to “check it out first with the actual
article” and to verify for themselves the quotations from
his own work to which attention needs to be repeatedly drawn but
which Wessely now plays down, the full references can be
accessed in “Quotable Quotes Updated”
and in “Magical Medicine: how to make a disease disappear” (http://www.investinme.org/Documents/Library/magical-medicine.pdf
).
Readers of Professor Wessely’s website may not recognise his
version of medical history but they may recognise a recurring
theme, which is his apparent lack of self awareness.
He presents himself in a heroic role as a patient advocate
determined to dispel unhelpful stereotypes whilst, many would
argue, he is in fact the source of those stereotypes.
He seems unable to grasp why those suffering from a disease he
regards as “somatisation par excellence”, whose symptoms
he describes as being “perpetuated predominantly by
dysfunctional illness beliefs and coping behaviours” and
whose “[negative automatic thoughts] are explained as
distortions of reality” (Manual of cognitive-behavioural
treatment for CFS, Chalder T, Deale A, Sharpe M, Wessely S.
19/6/2002) should fail to be grateful for his interventions.
The essence of his apologia may perhaps amount to no more
than two lines from a Nina Simone song:
“But I'm just a soul whose intentions are good;
Oh Lord, please don't let me be misunderstood”.