Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:
>>>>> Help ME Circle <<<<
>>>> 3 February 2012 <<<<
Editorship : j.van.roijen@chello.nl
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:
For private members the original word document by Margaret
Williams is attached, but can also be fond in htm format at
the Url of MEactionUK below.
~jvr
``````
http://www.meactionuk.org.uk/Please-dont-let-me-be-misunderstood.htm
Oh Lord, please don=92t let me be misunderstood
Margaret Williams
16th January 2012
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*:
http://bit.ly/AseiEy).
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=92s 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=85 at least
partly as a response to certain features of the illness such
as =85 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=85 but the line
between real and unreal illness*
(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=92t 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=92 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 =91organic=92 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=92 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 =91real=92 disease - it
is better for their self-esteem*; *many patients become=85
over-sensitised to physical sensations*; *Blaming
symptoms on a viral infection conveys certain advantages,
irrespective of its validity=85 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=92s 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=85 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=85 they haven=92t
succeeded and won=92t*.
He goes on to say:
* I do not blame those who repeat some of the things they
have read about me=85. 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* (http://bit.ly/qR9pLi)
and in *Magical Medicine: how to make a disease
disappear* (http://bit.ly/e3apux).
Readers of Professor Wessely=92s 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*.
~~~~=20
---------------------------------------------
Send posts to CO-CURE@listserv.nodak.edu
Unsubscribe at http://www.co-cure.org/unsub.htm
Too much mail? Try a digest version. See http://www.co-cure.org/digest.htm
---------------------------------------------
Co-Cure's purpose is to provide information from across the spectrum of
opinion concerning medical, research and political aspects of ME/CFS and/or
FMS. We take no position on the validity of any specific scientific or
political opinion expressed in Co-Cure posts, and we urge readers to
research the various opinions available before assuming any one
interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
link to our complete archive of posts as well as articles of central
importance to the issues of our community.
---------------------------------------------
