Monday, 27 December 2010

Hospitals are full of Sick People

Hospitals are full of sick people, and if they were not, what function would they serve ? Of course hospitals are not populated only by people who are ill or who have suffered injury, each institution is a social complex made up of professionals, support staff and visitors, as well as those people who are being treated, investigated or in some way assisted. Within a hospital, the experiences and beliefs of ‘the sick’, are constantly moderated and influenced by all the other social elements operating within and through the institution. And the point of this observation ? :

For most of the three decades since I was given a diagnosis of chronic PVS (Post Viral Syndrome ) I have avoided having regular contact with other people who share this and the umbrella diagnosis CFS (Chronic Fatigue Syndrome ). The truth is I don’t really like the company of ill people, by which I mean, I don’t like the exclusive company of people whose commonality is defined by disease. I also have the same aversion to social groupings based on exclusivity of religion, gender, ethnicity and culture (class and ability are more complicated issues and for sheer pedantry I leave them out of consideration here) so it’s not that I identify ‘illness groups’ as particularly discomforting, it’s just that any club I’d want to belong to needs to have a broad ‘people base’ for me to find it in any way attractive. Over the last few months however I’ve been reading and posting on CFS related forums and it is that experience of communicating within a social group whose members are by necessity self defined as ‘sick’,  that has prompted me to start this Blog.

Clubbing together to provide mutual support, share practical approaches to the management of illness, share information on sources of help and to discuss political and scientific developments that offer hope of better treatment and even cure, would seem a wholly desirable objective. Desirable it may be in principle, but from my recent experience I now question how healthy Internet forums ,  particularly the closed world of the private forums, are for groups based solely on disease commonality. There are three things in particular that have alarmed me about the CFS/M.E / FM  /CFIDS  forums (no forum links provided on this blog !):  Firstly a propensity of posters to promote questionable, even bizarre beliefs that border on a kind of cultism. Secondly, the wide acceptance of the appropriation of science to support anti science agendas. Thirdly the existence of a peculiar caste system of ‘illness qualification’ which allows that a  claim to be ‘more ill’ confers the possession of unchallengeable beliefs and the right to act as arbiters of what is or is not legitimate treatment, research or medical support.

Of course it is not surprising that people suffering chronic health impairment, and who have little effective support from health professionals, should develop ideas about illness and treatment that are poorly related to medical science. Even if one were to accept the certainty of those who advocate a somatic diagnosis (see;185/2/95 , ) there is still no definitive ‘cure’ and those treatment regimes which do exist have been poorly tested across the range of medical specialisms encountering these putative somatic conditions. Individuals who have a diagnosis of CFS or one of its allianced illnesses have, simply to maintain a semblance of sanity, to become their own doctor.  The CFS forums are rife with recommendations and affirmations of supplements, miracle foods and peculiar diets all backed up with the advertising drivel of the naturo/homeo -pathic industry. On the CFS forums these ‘colourful cures’ are acknowledged with enthusiasm, while in contrast the simple advice of qualified medical opinion, (backed by both research and logical assessment) is treated with either weary acceptance or outright disdain.  Beyond this incidental re-broadcasting of quackistry, and of a magnitude of greater concern, is what The Lay Scientist  blogger Dee Tee  accurately described as  “CFS sufferers discussing these powerful drugs [antivirals]  in the manner of kids choosing pick and mix at a candy store”. (see ) .

That goji berry, flax seeds, mineral supplements or the ever fantastical ‘detoxification’ diets, should be touted as treatments or cures for an (at present) ineffable disease, should be no surprise, but the peculiarity of one single scientifically plausible hypothesis of disease causation attracting comparable tin foil hat  adherence needs some explanation. What is it that has given the ‘viral explanation of CFS’ such credence that people are now willing to expend large sums of money on treatments which themselves can have significant damaging effects ? The potential for CFS to be caused by a persistent viral infection was recognised over thirty years ago, and an incidental link between Epstein Barr Virus infection and subsequent CFS illness is well established, but until recently there had been no collective enthusiasm amongst those affected by CFS to actively seek antiviral treatments. The driver of this new enthusiasm has been the salvationist adoption by many of those affected by CFS (both sufferers and their carers) of the WPI  and the WPI’s championed hypothesised link between CFS and the putative XM Retrovirus (see ).

The character of the WPI and why it and the XMRV hypothesis should have become so attractive to some people affected by CFS are subjects worthy of further exploration and I hope to return to these in a subsequent essay. What I want to underline in drawing this post to a close is the inherent contradiction in the meta discussion being pursued on the CFS forums.  I would go so far as to describe the disjunction between, on the one hand the legitimacy of scientific process that produces reasoned hypothesis (a retrovirus may be causative of CFS) and on the other, snake oil recipe swapping, as a deliberative paradox. The paradox arises within the discursive processes of the online forums where deliberation is subject to an inherent sensibility (science can’t be trusted), but where one element of assumed scientific product (XMRV = CFS) has, in isolation from any reasoned acceptance of scientific principle, been settled upon as an iconised source of salvation. Thus goji berry and magnesium supplements appear side by side with tenofovir and raltegavir  in the proposed curative litany propounded on the CFS forums.

Does any of this matter ? I think it does; because both science and the interests of people affected by CFS (sufferers, their families, their carers) are harmed. Science is harmed by the development of yet another vector of hyperbolic misrepresentation, while those affected by CFS are opened up to multiple harms:  a dissuasion to trust the best available medical advice, the ingestion of damaging inappropriate and ineffective medications in circumstances of poor or even neglectful professional oversight, the adoption of hopeless belief in cures that can never materialise, the misdirection of limited research resources, and potentially, the loss of political and media concern as another overstated hypothesis deflates beneath the weight investigation. Those affected by CFS have a choice, conduct discussion of the illness and its causes on the basis that science is a whole process, not a market of products and suppliers from which the most attractive, fashionable and effectively advertised can be chosen as a matter of taste. Or, risk losing all credibility outside of forums which are in danger of becoming introverted and cultified gripeholes, lacking reference to the wider world and realistic notions of achievable wellness.


  1. While I disagree with the idea that forums or local support groups are worthless, I do agree with the idea that claims of efficacy of alternative medicine or XMRV cheerleading just makes CFS patients look crazier. The fact is that even experts are confused about the XMRV results they are seeing.

    But the perception of this disease is a real problem. It can be strongly argued that the actions of (mostly) psychiatrists in naming this group of diseases "chronic fatigue syndrome" is what has hurt the most. This resulted in two problems. The first problem is that the symptomatic diagnosis lacks specificity. Due to this, it is quite likely that different patients have different underlying diseases. Research on pathology should proceed based on the discovered biomarkers, rather than expecting people with different diseases to all have the same biomarkers and pathology. The second is the fact that the name and associated media waffle, hurts credibility and dissuades good scientists from participating in research.
    The idea that it can all be explained as a single functional syndrome is an excellent example of harmful pseudoscience from psychiatry. It is also unfortunate that they preach CBT as a cure, when none of the studies has ever demonstrated such a claim. Unimpressive results on subjective questionnaires are dressed up as major improvements. But this research is not based on placebo controlled trials and should be deemed similarly untrustworthy in the absence of objective data on improvements.

    In fact, the largest real-world CBT/GET rehabilitation study so far published, it was found that physical capacity deceased and a negative effect on employment status. (summary is in English, see page 81)

    The fact is that research funding on CFS is a small fraction of the funding which is spent on other diseases with similar impacts on the community and the economy. (see annual reports of NIH (USA) or UK government spending and compare to other diseases).
    CFS causes major economic costs, over $20 billion dollars per year in the USA (inflation adjusted).

    Many people wonder why there haven't been any major advances in understanding the pathology. The reason is very simple: very little money has been spent over the last 20 years on uncovering the pathology. This is the fact that CFS patients should be shouting at the rooftops.

  2. The forums should be of assistance to CFS affected people – sufferers and carers, but the nature of the internet is that it facilitates easy propagandising and unless forums are strongly moderated and unhealthy attitudes challenged, then Internet forums become recruiting grounds for the most manipulative agenda pushers. I have just posted a further essay which deals with aspects of psychiatry, CBT etc. I’ve no brief to support psychiatry or individual psychiatrists, however there has been a huge amount of misinformation memetically spread around the net. I’m unaware, other than Wessely pointing to his 1994 study, of anyone talking about CBT as a cure, and as that study was out of date even in its own terms of reference by the time it was published I don’t see an issue. I’m unclear what your claim is re: “largest real-world CBT/GET rehabilitation study so far published, it was found that physical capacity deceased and a negative effect on employment status.” Given the paper states: Physical capacity did not change; employment status decreased at the end of the therapy. It is difficult however, to judge these results, since no control group had been included. There’s no indication that CBT [had] and a negative effect on employment status, merely that employment status decreased coincident with an ending of therapy – which could be explained by the therapy having a supportive role in keeping participants in employment.

    I entirely agree that CFS is a major disease issue, however there is no sound epidemiology on which to base claims of economic costs, neither is there any single basis on which to pursue pathology. CFS is a categorisation of diagnosis, not a diagnosis, and those with the CFS label almost certainly represent a population suffering from a range of diseases, not one single discrete illness. We can complain about the lack investment in research and support services, but unless we acknowledge the problems of communicating the complexity of the issues underlying CFS, then we will never be able to effectively communicate those complaints to those who are in a position to effect change.

  3. I wasn't claiming that CBT had a negative impact on employment status, but merely that it did not help at all, when it came to objective measures. "decreased at the end of the therapy" in this case doesn't mean the employment level went down after therapy was ended, it means the status declined during the therapy period. If you look at the original data (the problem that the data wasn't presented in English), this will become clear.
    One of the more plausible reasons for the decline is patients pacing themselves better and also awareness of the disability welfare process.

    You can argue about the accuracy of the epistimology, whether it affects 0.2%, 0.42% (as in the study I linked, which was based on the best epistimology studies so far - you might want to read them). Or over 1% as claimed by the CDC based on their 'empirical criteria' (ie. people who haven't actually been diagnosed with CFS.)
    But the fact is that when you use the lower estimates (0.4% for example), you find that most of these people are not working. That in itself adds up. $10 billion per year is still a lot of wasted money.

    As far as talk of cures go, it seems you are not totally familiar with the literature. (I don't blame you, who wants to read hundreds of articles which are often of poor quality?)
    As far as Wessely goes, actions speak louder than words. What has Wessley achieved with regards to biomarkers or treatment in more than 20 years? Nothing. CBT/GET consistently fails to deliver objective benefits. Cognitive conditioning of patients to report minor improvements on subjective questionnaires hardly counts. If patients felt so much better, why didn't they increase their activity levels? (see Wiborg Psy Med 2010, or Brown J Clin Psy 2010 which provides an interesting model)


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