Saturday, 18 February 2012

A Nasty Case of Infection

When Richard Dawkins developed the idea of the meme he considered them as behaving like free floating viruses infecting human cultures at will, the meme hypothesis is by no means universally accepted but it’s certainly an attractive explanation of human behaviour  in the face of the adoption of notions which patently offer no reasoned advantage to those individuals and groups who absorb these ‘memes’ and make them their own. A particularly virulent infection is sweeping through groups of people who are affected by M.E/CFS – the condition known as  antivax .

 A loss of Immunity 

The death knell of the XMRV hypothesis of M.E/CFS causation, tolled by accumulating evidence and culminating in the BWG study has caused a significant degree of cognitive dissonance  amongst a proportion of M.E/CFS affected people.  There has long been an element of collective concern about vaccination amongst M.E/CFS affected people because of reports of the illness having been initiated by a vaccination, or of vaccination having initiated a relapse, although these reports are rarely tested against the metric of  “correlation does not equal causation” .  Following the demise of XMRV however, there has been a definitive move to describe M.E/CFS as a vaccine induced illness and to link with antivax voices from the Wakefield  inspired “autism as vaccine damage” school of unthought.  Embracing the antivax position seems bizarre, both from a perspective in which M.E/CFS advocacy has long sought scientific and medical acceptance in the face of (at times undue) profound, scepticism, and from a perspective which advocates speculative treatment of M.E/CFS with drugs of significant toxicity. Being seen by the medical profession to be openly supportive of an antivax position can only reduce further, the already low regard that many medical professionals accord the validity of M.E/CFS as a definitive organic illness. It is in simple public relations terms, the equivalent of voluntarily stuffing one’s head in a toilet bowl, taking pictures and posting them on the Internet – a way to ensure perpetual derision. 

Why Oh Why Oh Why ? 

Apart from unalloyed desperation to fill the void of the lost hope of XMRV, why are M.E/CFS affected people willing to throw their lot in with an activist position such as antivax, that itself has so singularly failed to achieve any credibility amongst scientists and medics and indeed serves only to alienate all but scientific frauds or those determined to ply a trade unburdened by the demands of logic and scientific discipline   

Direct appeals to antivax authority are actually rare on the M.E/CFS dedicated forums, pro antivax positions are usually limited to quotes of approval for Wakefield and his supporters and allusions to ‘vaccine harm’. Somewhat typical is the defensive approach taken in the case of  Prof. John Walker-Smith who is currently seeking the support of the High Court in London in turning over his being struck of the medical register following an inquiry into his part in the Wakefield study . Walker-Smith is discussed on various M.E/CFS forums by some contributors as though he were a victim of an establishment conspiracy instead of someone found guilty of significant professional failings.

In a ‘break from the usual cover’ adopted by antivax sympathetic M.E/CFS affected people, Dr J. Deckoff-Jones , formerly of the Whittemore Peterson Institute and an advocate of antiretroviral treatment for the assumed (not XMRV) ‘retrovirus’ that is a supposed causative of M.E/CFS, has posted Blog entries which have included:

But then, introduce vaccines, and lots of them, from many different animal sources, plus killed vaccines containing adjuvants. Isn’t there a significant risk of unanticipated recombination events, not to mention persistent immune activation favoring virus?”


“Pretending it isn’t happening because the MMR vaccine doesn’t “cause” autism, is about as idiotic as saying that our disease isn’t retroviral in origin because XMRV was probably a contaminant.”

these comments  have brought approving responses and encouragement for Dr Deckoff-Jones.

There is perhaps some explication in Dr D-Js posts as to why antivax, might be an attractive position for some M.E/CFS affected people.  In the face of a sense of having been rejected by ‘main stream’ science, and being only of determined interest of psychiatry,  the notion of ‘outsider science offers both apparent safety and legitimacy (of a sort) , a place where the renegade scientist breaks with convention and achieves cures denied to a dispossessed patient population by a venal ‘establishment’. Antivax is attractive because it offers an alliance of the self described dispossessed.  The wish to belong 'somewhere' is a powerful motive but in the case of 'antivax',  if acted upon it will leave M.E/CFS perpetually locked into an ‘anti science’ association of outsiders, lacking any real purchase on either the administration of science or the realm of political oversight. It is a motive of emotion, that appears more suicidal than constructive, and raises a substantial question mark over the legitimacy of future M.E/CFS advocacy.     

1 comment:

  1. I am having seriously dystopian feelings, if I see these people advocating on behalf of all patients. They can not be reasoned with (not that I am the best reasoner, far from it). They know everything better. They flood every avenue of discussion with their misinformation. The lopside every forum they enter.

    We need patients to be advocates, but the ones who are capable of critical thought should work closer together. Have a public forum, based on science. If someone floods it with their non-scientific BS, simply kick them off. Make measures against sockpuppets. Make sure scientific claims come with citations. Discuss BS like anti-vax topics only in a moderated fashion. Make clear disclaimers about the value and danger of anecdotes.

    Science is not a matter of majority opinion but of facts.

    Other things surely would come to mind.