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Jan 21, 2012                   

me+ME: Uncertain diagnoses +Williams on Wessely


I am around, and actually was a little less wasted the last few days, which I then spent to do some (around) programming, which is something which interests me and that I like, but for which I cannot feel too wasted or "fatigued", for then it just doesn't work.

If I keep being a bit less wasted there will be more on the subject of programming, and indeed more on the subject of probability and credible theories, but as it it is that still must wait, and for the moment I have two topics, of which the second is copied and by Margaret Williams.

1. The uncertainty of diagnoses
2. Oh Lord, Please Don't Let Me Be Misunderstood

1. The uncertainty of diagnoses

This section is just a sum-up of some difficulties I meant to write about, and may return to. It is here for those interested in methodological and philosophy of science issues, which are very important in ME/CFS, because especially 'the Wessely-school' aka the psychiatric approach to ME/CFS, has confused all methodological issues so as to push through its own style of pseudoscience.

For more on methodology and philosophy of science see:

     - On natural philosophy, philosophy of science, and psychiatry

One of the basic problems both with the science of ME/CFS and with the pseudo-science with ME/CFS is a combination of the vagueries of the definitions that are in use for ME/CFS, and the several different definitions in use.

First, all of the definitions that are used are vague, and indeed speculative, because there is no accepted causal explanation of ME/CFS and there is normally the idea that "5 out of 8 of the following attributes" is a clear diagnosis, which it is not; while anyway with most empirical definitions of any kind there tends to be a vague set surrounding a fairly clear set: The latter set consists of those who are typical for that definition; the former for those who are neither typical cases nor typical non-cases.

The totally mistaken and misguided idea that the "5 out of 8 of the following attributes" style of definition is a clear diagnosis (apparently because it looks "mathematical") I criticized in my On confusions and misunderstandings concerning the DSM-5, and I here repeat the main mathematical part

The following table suffices with instances of in how many ways x things can be taken out of y things, with x <= y, and 1 of x always in x ways and x of x in 1 way (calculated in Squeak):

2 of 3=3 2 of 4=6 2 of 5=10 2 of 6=15 2 of 7=21 2 of 8=28
  3 of 4=4 3 of 5=10 3 of 6=20 3 of 7=35 3 of 8=56
    4 of 5=5 4 of 6=15 4 of 7=35 4 of 8=70
      5 of 6=6 5 of 7=21 5 of 8=56
        6 of 7=7 6 of 8=28
          7 of 8=8

But this is merely a hopefully instructive aside, as to the number of distinct ways in which one can have an ailment "X" on any diagnostic schema that is written around the "x out of y" attributes: 5 out of 8 in fact defines 56 different ways of having that ailment defined by 5 out of 8 attributes.

Next, a diagram to clarify what logical confusions arise in case one has three different definitions for the same (kind of) disease (it is theorized) - and the diagram mentions three such definitions for the case of ME/CFS, but as before, in fact the point is perfectly general:

What is above the horizontal black line charts the logical possibilities with three definitions of the same set of things, such as people suffering from ME or CFS, each with their surrounding boundary of vagueness, in the happy case that one of the definitions is more or less adequate to the real facts.

The lower part shows one really existing set, according to one definition, with its surrounding set of vague cases, and two unreal sets (also corresponding to mermaids, dragons and griffons: also things one can talk or think about, but without really existing members).

Note that all that scientists may empirically meet are members of that one real class, though the members they meet may quite possibly belonging to the vague part of the set.

So... this explains in principle why with vague and opposing definitions, especially if these definitions themselves are vague because in terms of the "x out of y symptoms" approach, one may expect to "theorize" for decades what one is really talking about, and what not.

This is illustrated also by the following section:

2. Oh Lord, Please Don't Let Me Be Misunderstood

The text between the horizontal lines is by Margaret Williams, and can be found also here, on Phoenix Rising.

The basic intention seems to be that it serves as a corrective to a new personal site that professor Wessely has opened, where as usual he propounds his ideas in a very vague, very imprecize, very obfuscated, but also quite clever way, for his real means is not science, as his real end is propaganda for his fallacious and basically abusive, sadistic and immoral notion that people with ME/CFS thought themselves ill by means of their dysfunctional beliefs.

I suppose I will return to the cogitations and prose of professor Wessely, and to his new site, but for the moment Ms Williams is quite adequate, and all I did was copying her prose and adding a link to professor Hooper's "Magical Medicine":

Oh Lord, Please Don’t 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”:

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 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” (http://www.meactionuk.org.uk/Quotabl...es_Updated.pdf) and in
               “Magical Medicine: how to make a disease disappear

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”.


Corrections, if any are necessary, have to be made later.


As to ME/CFS (that I prefer to call ME):
1.  Anthony Komaroff Ten discoveries about the biology of CFS (pdf)
3.  Hillary Johnson The Why
4.  Consensus of M.D.s Canadian Consensus Government Report on ME (pdf)
5.  Eleanor Stein Clinical Guidelines for Psychiatrists (pdf)
6.  William Clifford The Ethics of Belief
7.  Paul Lutus

Is Psychology a Science?

8.  Malcolm Hooper Magical Medicine (pdf)
 Maarten Maartensz
ME in Amsterdam - surviving in Amsterdam with ME (Dutch)
 Maarten Maartensz Myalgic Encephalomyelitis

Short descriptions of the above:                

1. Ten reasons why ME/CFS is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:

7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
9. I tell my story of surviving (so far) in Amsterdam/ with ME.
10. The directory on my site about ME.

See also: ME -Documentation and ME - Resources
The last has many files, all on my site to keep them accessible.

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