MAGICAL MEDICINE: HOW TO MAKE AN ILLNESS ... - Invest in ME

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White treating this as a purely psychiatric disorder and not as a multi‐system complex disorder. There’s a
perception that in working with the UK, (the US is) adopting that this is a purely psychiatric disorder”.
Inexplicably, Dr Reeves went on to say: “Peter White, the psychiatrist we work with, does not look upon CFS as a
psychiatric illness – he is an expert on autonomic nervous system function and he’s highly instrumental in all of the
hurdles – both with patients, with the government and with physicians – in trying to put together a national
programme”. As Tom Kindlon pointed out, most people would question why, if an expert in the autonomic
nervous system were sought, a major body like the CDC would bring in Peter White (Co‐Cure ACT: 1 st
October 2009), since there is no evidence that he is an expert on dysautonomia. Indeed, White’s own words
confirm this: the BBC programme “You and Yours” ran a series of interviews on ME/CFS in November 2007,
and when asked by the interviewer about the Canadian Guidelines, Professor White said he did not like
them: “The problem is, and the reason why I don’t use them, is they’re very complicated to use and would require me
actually to do tests on my patients that I don’t think I ethically should be doing on my patients”. The interviewer
then addressed Professor White: “You mentioned tests that you don’t think it’s right for you to do, such as…?”, to
which Peter White replied: “Such as the tilt table test. I would have to exclude a condition called POTS, where the
blood pressure falls on standing up. I don’t think that’s justified”. The interviewer then asked Professor White:
“So you think they’re unethical because they’re too demanding?”, to which Professor White responded: “Yes”. If
Professor White were an “expert on autonomic nervous function”, then tilt table testing would be a routine test
that he carried out.
Dr Reeves also said – categorically – that Peter White does not look upon “CFS” as a psychiatric illness.
Again, this does not accord with Peter White’s track record, which is that he regards it as a somatoform
disorder.
Referring to Dr Reeves’ “Introduction Before Public Stakeholders Meeting” in Atlanta, 27 th April 2009 and
his desire to have an international consensus on CFS, Dr Mary Schweitzer commented (Co‐Cure 1 st May
2009): “I particularly noted (his) reference to the UK and the NICE Guidelines. I believe he said ’Dr Peter White is a
representative of, I think, the only country and Ministry of Health in the world that has developed a comprehensive
programme for diagnosing, evaluating and treating CFS’.
“ I have to pose a question that seems to me to be an ambiguity that continues to go unchecked within the research and
the approach of the UK and the US.
“The CDC asserts on its website that CFS is not ME.
“Benign Myalgic Encephalomyelitis was identified and diagnosed in the UK and it is the entity that research there
refers to now as CFS. CFS/ME is the compromise name. People with ME are lumped in with CFS, if they are studied
at all.
“If the UK is including ME with CFS participants and the CDC knows this, and those NICE Guidelines cover both,
how can the CDC refer to these Guidelines as representative of CFS?
“If ME exists as a discrete neurological entity with its own criteria (which the CDC says it does), then why doesn’t the
CDC have a research programme for it? It exists and they acknowledge it exists.
“If ME is being investigated with CFS, then why does the CDC allow this to continue while at the same time
acknowledging ME is not CFS?
“Surely that (is) a clear case of muddying the waters and therefore making research unrepresentative of either ME or
CFS?”.