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 http://bjp.rcpsych.org/cgi/content/full/bjprcpsych;185/2/95 , http://www.ncbi.nlm.nih.gov/pubmed/10375340 ) 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 http://layscience.net/node/1052 ) .
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 http://www.sciencemag.org/content/326/5952/585.abstract ).
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.