Friday, 14 January 2011

Saints and demons in the Cult of The Chronically Fatigued

You can't convince a believer of anything; for their belief is not based on evidence, it's based on a deep seated need to believe. Carl Sagan 
 
Cultism seems an inherent human behaviour, probably an evolutionary adaptation selected for as a group cohesion process in the development of the language and culture of our homonin ancestors. Cultism frequently has harmful effects when encountered on a broad social scale but it is likely to be an inevitable group response where the group is experiencing, or (perceives that it is experiencing) external stress. Having an illness which is effectively ‘undiagnosable’, which causes individuals significant social dislocation, which has limited social and scientific acceptance and which leaves the individual feeling permanently ‘crap’, is as an effective a source of individual stress as one could want. Multiply that individual stress amongst a group defined on the basis of a shared experience of that stress and the conditions for a group psychology founded on a sense of external oppression appears ready made. Of course this doesn’t mean that CFS = cult, merely that some people affected by CFS, which may include carers as well as those who are ill, will find a degree of safety in adopting a cultified mindset. This ‘safety’ default position can also be seen in anti vaccination groups, groups of parents of developmentally challenged children and groups advocating exclusive adoption of non scientifically validated medicine and it is notable that across internet forums there is a degree of interchange between these various groups.

Shame the Devils

Cults and cultic thinking are not phenomena which are exclusively religious in character, neither are these phenomena dependant upon the presence of a charismatic founder/originator but there is a very strong propensity for cultic thinking to drive the process of ingroup  bonding by identification of a personified outgroup ‘demon’ and a personified ingroup ‘saint’. Indeed these personifications may multiply into a veritable pantheon of  white hat and black hat wearers, however in the cultified thinking found within the CFS forums there are only two major demon figures, notably one male and one female.  The senior devil, and veritable prince of lies according to the liturgy of his CFS detractors is psychiatrist  Professor Simon Wessely . The demonstration of Wessley’s commitment to the dark side was his co-authorship of a paper on the use of CBT as a treatment for CFS which demonstrated high levels of positive outcomes. CBT is considered by some of those affected by CFS/M.E to be inimical to good illness management and some even claim it is substantially injurious to CFS sufferers. There is a commonly repeated meme that Wessely specifically chose a predominantly psychiatric model of CFS to load his CBT study so as to get a ‘positive’ result.  Ironically not only did Wessley and his colleagues reference their patient recruitment terms to recommendations from a US expert conference which noted the need to exclude psychiatric diagnoses ( It was viewed as essential for the investigator to screen for psychiatric disorder using a combination of self-report instruments followed by at least one structured interview to identify patients who should be excluded from studies or considered as a separate subgroup in data analysis)  as well as to a UK expert conference where psychiatrists were in a minority, but in any case both these recruitment references were superseded by reclassifications by the CDC  and the DOH . The reclassifications rendered the Wessley et al study of CBT largely inapplicable to succeeding patient populations, so even were that study to have been anything other than scientifically sound, it was largely redundant even by the time it was published in 1997 given the CDC adoption of Fukuda et al in 1994. Nevertheless Wessely is code for evil in CFS cultism, and by association, so is psychiatry, all psychiatrists and any treatment they may recommend for CFS.

More recently recruited to be an object of vilification by cultic thinking CFS affected individuals, is Dr Esther Crawley,  Dr Crawley has doubly damned herself, firstly merely by following the guidelines of the National Institute for Health in treating CFS patients, and subsequently by proposing a study involving (in this author’s inexpert opinion, the decidedly un-scientific) Lightening Process© .  Normally a scientist like Crawley could have expected support from the science orientated MEA but even the MEA was drawn to seek a review of the ethics of the less than appositely named SMILE study. Crawley has now been cleared to go ahead with SMILE but her role as cultic hate figure  is assuredly permanent.  

Angels in the Firmament

The early heroes of CFS research have passed on , additionally the disease has never attracted the sort of media whore … cough er ..  celebrity campaigner, to whom the hordes have flocked adoringly and CFS in recent years has especially been a cause in need of a Joan of Arc to publicly suffer vicariously for the afflicted. The cultic inclined of those affected by CFS have found a trinity of Joans in the guise of Dr Judy Mikovits and Annette and Andrea Whittemore . No doubt admirable people these three individuals are now treated as personae mirabilis wholly beyond criticism, as also is the product of their sphere of creation   – the XMRV organism and its supposed role in causation of CFS.

 XMRV has ticked all the boxes for those affected by CFS and who are looking for a miracle, although the nature of the miracle has turned out to be something of a surprise. While the tenuous link between XMRV and CFS offers the hope of a ‘cure’, far more of the enthusiasm of the cultically inclined has been directed toward XMRV’s potential to accord social acceptance. Within the CFS forums the aspect of social acceptance has been mediated via a discourse which favourably compares HIV with XMRV and there is a repetition of statements to the effect that CFS sufferers are worse off than those affected with HIV !  The sheer scale of the dislocation between the perceived status of HIV affected people and the actual reality of living with that disease almost suggests a kind of collective dissociative thinking on the part of some CFS groups, it’s as if herpes suffers were seeking the public and scientific ‘acceptance’ accorded to small pox victims. 

In the way of many cultic phenomena, the force of reasoned external critique has only served to re-inforce the saintly status of the Whittemore Institute, its Director,  its pre-eminent ‘person of treatment’ its President  and its ‘discovery’ . Every scientific paper that casts doubt on the definitive role of XMRV in CFS is explained away in terms of incompetence on the part of naysayers, contempt on the part of authority and conspiracy on the part of – well everyone from the massed ranks of psychiatry led by the evil Wessely (see above)  to Big Pharma wanting to defend profits from ineffective drugs prescribed to lifetime sufferers of CFS. The dubious positions taken by the WPI – marketing of XMRV tests to desperate CFS sufferers before any test validation has been achieved, ownership of the testing laboratory by the husband of the WPI president, Mikovits sharing a platform with disgraced and apparently medically fraudulent researcher Andrew Wakefield , the WPI President allying the WPI to an anti CBT agenda - only serve to elevate the WPI as the only true voice of the CFS ‘dispossessed’.

No matter what contrary evidence may arise, there is now no hope that the WPI ‘followers’ will be dissuaded that XMRV is the cause of their disease, every challenge to WPI or its science will be treated as an undeserved attack motivated by jealousy or competing financial and  professional interests. The demands for anti viral treatments will grow, pointless testing will take place, patients given positive test results will feel the need for treatment and when conscientious doctors refuse to prescribe dangerous and inappropriate medication, those patients will go to unscrupulous doctors happy to prescribe whatever the patient demands, merely for the consult fee. Mikovits and WPI could do much to rectify the situation – Mikovits could start being positive about all the science of XMRV, instead of perpetually defending her own work, and WPI should withdraw its anti CBT stance given that, no matter how inadequate, CBT based treatments are proven effective in helping CFS sufferers to at least to maintain a level of functionality.  

6 comments:

  1. So is it right to condemn Crawley for arranging a trial on children of the "decidedly unscientific" Lightening Process? Is it cultish for CFS patients to be angry about this use of the limited funding available for CFS research in the UK? Or to feel that Crawley's belief that it is a sensible priority indicates that she may not be someone who should be given such authority?

    I think you've misunderstood why Wessely is so disliked too. It is not so much his research into CFS, but that funding has been so focused upon his pragmatic, rehabilitative approaches rather than upon work to identify causal mechanisms, biomarkers, etc. Wessely has been instrumental in encouraging and promoting this approach to studying CFS, and it goes strongly against the preferences of many patients. You can have a reasonable discussion about who is right on this matter, but given the limited funding available, it is a zero-sum game... indeed it could be fairly argued that the emphasis upon behavioural treatments has led decision makers to view CFS as a condition outside of the purview of normal medicine, and one for which patients should take responsibility for themselves, thus reducing the moral imperative for serious funding and investigations into the illness.

    There's also the impact this work has had upon patients, with many been exposed to confused and deceptive approaches to CBT, which are promoted through specialist centers utterly lacking in appropriate controls or systems of accountability. It is not at all surprising that this has led to many patients feeling abused. When we're given authority over others, especially those viewed as weak, and effective over-sight is not in place, abuses do tend to occur. It's a sad, but endlessly repeating pattern in human life. That those promoting a psycho-social understanding of CFS have shown such little interest in the psycho-social setting in which their own work and treatment takes place makes it difficult to take them at all seriously.

    There's also stuff like the promotion of the recent Reeves study - a press release titled "Is Chronic Fatigue Syndrome a personality disorder?" - when you looked at the evidence it's pretty clear that the answer was "no", but many journalists did not take the time to do so. I wonder what impact this will have upon the psycho-social setting patients find themselves operating in?

    There are very real reasons for CFS patients to be angry about the way they have been treated. To be focus only on the unreasonable way that frightened, sick and desperate patients sometimes respond seems slightly snide and unpleasant.

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  2. Wow, so many strawmens, and a few ad hominems thrown in to boot. I don't know where to start. (I will only have time to address a few points)

    Cultism? This comparison reduces the credibility of the arguments you make.

    I'm also not so sure what the whole Wakefield-Mikovits guilty by association fallacy has to do with anything.

    I will also forgive you for your lack of familiarity with the published scientific literature on CFS, since you presumably have to rely on open-access articles. I am more familiar with the literature as I have access through my university.

    Anyway, do you agree that CBT is primarily a psychological therapy? Do you agree that it provides minimal benefit to people with physical disease, apart from coping skills and making the best of what physical capabilities they have?
    Do you agree that many patients may in fact already have those skills? There are plenty of CFS patients who have never suffered from anxiety or depressive disorders either, so the treatment is not necessary on that basis either.

    Why then do certain psychiatrists insist cognitive or behavioural treatments will result in significant improvements of physical symptoms in CFS?

    Actions speak louder than words.

    If CBT does not cure patients, then why does Wessely not champion research into biochemical causes? Other than his poorly controlled cortisol studies? (which mostly just demonstrate that CFS patients are less stressed than healthy controls on weekdays because they aren't working. Seriously, review the general literature on cortisol studies in healthy patients).

    By the way, although you haven't mentioned it, there is little evidence from studies into exercise physiology to suggest that deconditioning is a cause of CFS symptoms (so GET is not a necessary treatment). However such studies do document inflammatory processes which distinguish CFS patients from sedentary controls.

    The comment about HIV patients being "hale and hearty" was by Nancy Kilmas and was on the basis that those with HIV who are undergoing successful treatment (and therefore have no major signs of AIDS) tend to feel better than the typical CFS patient. Otherwise, you seem to be confusing AIDS with HIV+.

    There is still plenty of criticism of Mikovits from CFS patients on the forums. Mostly resulting from her shooting off her mouth a little too often. But maybe you didn't bother looking too deeply since you don't like forums that much.

    Also, why did you link to a study which only used subjective or nonspecific measures of improvement as an example of "proven" efficacy? What about the much larger study that I cited in a previous comment? What about the Cochrane meta review, which criticizes the inconsistent findings in follow ups after the cessation treatment. Or the Wiborg meta review, which found that despite improvements on subjective questionnaires, objective measures of activity levels were unchanged?

    What CFS patients want is research into etiology and treatments that will actually treat the disease and lead to objective improvements. Not "treatments" that merely condition patients into reporting less symptoms on subjective questionnaires.

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  3. The comparison of CFS being worse than HIV comes from Dr. Klimas, a notable HIV and CFS researcher. Dr. Klimas did twenty years of HIV research before adding CFS to her work.

    quote

    "If I had to choose between the two illnesses I would rather have H.I.V."

    "My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested."

    "Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. "

    "I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.“ (Nancy Klimas 2009)
    endquote

    You can find her repeating this in several places if you google it. To make CFS and XMRV be all about Judy Mikovitz is a serious mistake that ignores the work of many fine researchers that have been in the trenches for decades. Skeptics ought to consider that CFS research encompasses far more than just XMRV and take note of the significant findings that are not nearly so glamorous as a sexy new retrovirus. You won't denigrate CFS patients and researchers if you actually pull your head out of your ass and examine material above beyond the axe you have to grind. Of course, you will only do that if you actually care about patient welfare. I suggest you start with the Canadian Clinic Consensus to educate yourself about what is known on CFS. It makes a good foundation from which to launch further studies.

    Whatever else may be said, the XMRV issue has caused a great many people in science, medicine, media, government, and the general public to give serious attention to a serious disorder than needs a significant investment in research and treatment options.

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  4. More poor results from a CBT/GET study, published 15 Jan 2011.

    http://www.ncbi.nlm.nih.gov/pubmed/21234629

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  5. Three Chord Monty19 January 2011 at 22:17

    "The demonstration of Wessley’s commitment to the dark side was his co-authorship of a paper on the use of CBT as a treatment for CFS which demonstrated high levels of positive outcomes."

    I see. It must have had absolutely nothing to do with the well over 100 additional papers Wessely has co-authored on Chronic Fatigue Syndrome.

    Your premise seems to be along the line of: sheeplike patient communities and the feedback loops they create feel negatively about Simon Wessely, therefore their animus has no merit. With a bell & a whistle thrown in.

    Congratulations on a notable piece of critical thinking.

    Let me ask you a question: if one takes a look at some of those papers, do you believe that only cherry-picking can produce a volume of statements and attributions that might give a hypothetically reasonable person a reason to believe that patients might have good reason to direct animus at Wessely?

    Or do you believe he's unjustly persecuted, and that his view of CFS as a functional somatic syndrome, a matter of abnormal illness beliefs, should be viewed as a valid approach towards the study and treatment of CFS?

    While you're considering that, perhaps the idea of a mass rejection of a therapeutic modality that he has apparently proven to be effective may seem less irrational to you.

    Perhaps not.

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  6. "No matter what contrary evidence may arise, there is now no hope that the WPI ‘followers’ will be dissuaded that XMRV is the cause of their disease, every challenge to WPI or its science will be treated as an undeserved attack motivated by jealousy or competing financial and professional interests."

    Well, Judy was fired from the WPI ten month after you have written this (so you could not have anticipated it), but I find it interesting (tragic? ironic? sickly amusing?) that the WPI went from "the church" to "Heretics!" with that step – at least in the eyes of many religous XMRV believers.

    What I keep saying, underlying this "religous" believe is simple confirmation bias.

    With regards to (any) anti-virals (and as well the lightning process or any other untested treatment like the Methylation protocol, the cpnhelp thingy, and so on): It should be put to a proper test. Make a study, see if it works, report the results, put the matter to rest. I think anti-retrovirals are not the right thing for ME/CFS and the lightning process is bullshit, but physicians *are* prescribing these therapies (with patients demanding treatment and in lieu of properly tested treatments) and we need to know if they work. Test them. Know the risks, make proper studies.

    BTW, the effect size of CBT have been hugely over-reported. And I think when testing these "alternative" treatments, the effect size will be comparable to CBT. What is the difference between CBT and lightning anyway? CBT = getting rid of "false illness believes", making the people think they are health, getting rid of false thoughts?. Ligthning = Making the people think they can get healthy if they think the right/positive thoughts? It is all in the head, and no illness mechanism that is medically/evolutionary comprehensible.

    PS: Montoya in Stanford did it with regards to anti-herpes anti-virals. The results of the initial small study were promising, but a larger study seems to have not brought the hoped results. Montoya is bit tight lipped about the (negative) result of the study, maybe because a pharma firm payed for it...

    So now we know that the anti-herpes anti-virals help only a very small subset of patients (and we have no diagnostic markers who are helped and who not).

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