Oh Lord, please don’t let me be misunderstood

[Guest guest]

Oh Lord, please don’t let me be misunderstood

Margaret

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’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*

(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 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*

( , Simon Wessely, 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, 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* (http://bit.ly/qR9pLi)

and in *Magical Medicine: how to make a disease

disappear* (http://bit.ly/e3apux).

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*.