Go To Part One
Walker discusses the origins of the definitions of CFS, and briefly mentions that two ME experts refused to sign the document that led to the Holmes et. al. definition of CFS, as the history of ME was being ignored. (p. 156) He goes on to discuss the development of the Fukuda and Oxford defitions.
"In order to re-distribute power or change social meaning, it is not enough to simply change the names of things or even change the language; you have to condition subjects into accepting the reality of the changed situation." (p. 161)
Walker claims that Wessely and Caroline Richmond began to do this in 1985, three years prior to the Holmes definition of CFS. ME patients were "malingerers" and ME had "no organic cause". Wessely wrote the papers, Caroline Richmond gave them maximum publicity, according to Walker.
If a supposed CFS patient refuses to submit to psychiatric testing (presumably in the UK), then they could be suffering from PRS or Pervasive Refusal Syndrome. (p. 171) However, Walker thinks this is a violation of human rights. He then goes on to discuss other psychiatric diagnoses and this leads into a discussion of methods used to control or limit questioning of these psychiatric diagnoses, both in the UK and USA.
From the mid 90s and through much of the next decade there were a series of reports that evaluated CFS in the UK and Australia. He then goes on to discuss criticisms of these reports, including these two quotes from Dr. Peter del Fante on the Australian CFS guidelines:
"... This only confirms the perceived lack of professionalism and integrity in creating a balanced and unbiased set of guidelines for CFS."
"CBTdoes not treat the underlying (as yet unidentified) disease process in CFS." (p. 193)
The 1996 joint report from the Royal Colleges appeared to be heavily biased toward psychogenic explanations, and this led to a petition that was presented by the Countess of Mar to the Minister for State for Health. It was called "Fighting for Truth" and had 12500 signatures. It was rejected. These events led to a major shift in mood amongst ME and CFS patients and advocates. Trust had been broken.
In 1998 the Chief Medical Officers Working Group was formed to address some of these issues. It was the beginning of the current trend in activism in the UK. Sally Montague and Malcolm Hooper began to address these issues with a paper criticising the CMO Working Group. A reply to Hooper invoked mention of the Official Secrets Act. The CMOs report affirmed that there should be only limited biomedical investigations into ME, which set the stage for denial of testing. Hooper was also then subject to legal threats which Walker claims were designed to silence opposition to Health Watch members, and alter the terms of debate.
Walker later makes the point that those giving evidence at an enquiry should be completely separate from those taking evidence.
Walker goes on to discuss psychiatry in terms I agree with (p. 236): "Psychiatry is not an exact science, it is not even a science; it does not depend on verifiable quantitative material or laboratory results. Any psychiatric diagnosis is an interpretation, and as such is often skewed to fit the view of an individual doctor whose judgement is affected by prevailing commercial, cultural and ideological influences."
Walker concludes the book with the following sentence (p. 266): "Until someone holds an authoritative inquiry into the condition of patients and the motives of researchers, the British public will be left to the mercy of corporate interests and those who act consciously or unconsciously as their agents."
Walker has addressed more of these issues in later writing, including "Dirty Medicine: The Handbook" and "Cultural Dwarfs and Junk Journalism". (This last link is to a downloadable book).
On To Part Three
50 experts and 171 advocates oppose the HHS/IOM Contract to re-define ME/CFS.
Check out our IOM Contract Forum for the latest news and to join the campaign.
Demonstrations in San Francisco Dec 9th and Washington D.C. Dec 10th
Greenwashing Part Two
Blog entry posted by alex3619, Sep 10, 2012.
About the Author
I am a long term ME patient with many complications. While I have pushed research advocacy since 1993, I become political around 2009. My current project is a book called "Embracing the Null Hypothesis". The hypothesis that is unsubstantiated is the idea that CFS is due to dysfunctional beliefs.