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

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Having earlier informed colleagues in his Report that: “CFS is currently the most controversial area of medical
research and characterised by vitriolic articles and websites maintained by the more extreme charities supported by
some patient groups, journalists, Members of Parliament, and others, who have little time for research investigations”,
Dr Johnson stated in his letter: “I did not have specific individuals or groups in mind and consequently, I cannot
provide you with the names and details of the charities, patient groups, journalists, Members of Parliament, and others,
who I believed had little time for research. I do not have, and I have never thought about, attempting to compile such a
list. Similarly, I do not possess, and have never possessed, a list of vitriolic articles and websites, so I cannot provide
these”.
Also in his letter of 7 th November 2006, Dr Johnson simultaneously did “not know when CFS/ME became
controversial or why” but nevertheless proffered his speculation that “controversy sometimes arises when the
evidence base is slender as many views and ideas can be put forward without any means of resolving them. The
publication of a large number of research papers in the medical literature, some of poor quality or based on small
samples only leads to further confusion”.
This is an interesting piece of conjecture, given that the post of Statistician Clinical Trials Unit (CTU)
Division of Psychological Medicine Ref No: 06/A09 is described as the “Johnson_Wessely_Job” (07/07/2006)
at The Institute of Psychiatry where: “The team works under the direction of Professor Simon Wessely, the Unit
Director. The team is supported by the regular input of a Unit Management Group from within the Institute of
Psychiatry. The statisticians within the Unit also have regular supervision meetings with Dr Tony Johnson from the
MRC Clinical Trials Unit. The post holder will be directly responsible to the CTU Manager (Caroline Murphy),
supervised by the CTU Statistician (Rebecca Walwyn) and will be under the overall direction of the Head of
Department, Professor Simon Wessely”.
As no satisfactory response had been received to a perfectly valid request for further clarification (ie. the
names of individuals involved with the PACE trial who, Johnson believed, would, without his own “vital”
intervention, be unable to maintain the requisite “neutrality” which he was able to ensure through his
“familial involvement” with one of the charities), the ME/CFS sufferer wrote again with the same request.
Over five months after that request, Dr Johnson sent a further letter dated 2 nd April 2007 in which he wrote:
“The issues that you raise here are complicated. First it is important to realise that there is a substantial range of
opinion among clinicians about the relative merits of some treatments”.
Johnson’s reply was a five‐page masterpiece of confabulation but still did not answer the question asked.
Instead, amongst other diversions, he wrote at length about SSMC (standardised specialist medical care) for
those with ME/CFS as part of the PACE trial, causing another ME/CFS sufferer to ask:
“What is the accepted definition of standardised specialist medical care (SSMC) for those with ME/CFS? In order to
achieve an accurate assessment of the PACE trial outcomes, there must be a definition of standardised specialist
medical care, so what is this definition and where is it accessible? (It is a matter of record that there isnʹt one). Tony
Johnson accepts that an early design for the current PACE trial did not include an SSMC group but he seems to have
expediently overlooked the reality that there is no SSMC for those with ME/CFS, as Catherine Rye made plain in 1996
about the Sharpe et al paper of the Oxford trial of CBT/GET: ‘I am a sufferer and participated in the Oxford trial.
There are facts about the trial that throw into doubt how successful it is. It is stated that patients in the control group
received standard medical care. I was in that group but I received nothing’ ” (Independent, 30th March 1996, page
16).
The same ME/CFS sufferer also asked:
“What is Tony Johnson’s statistical rationale for deliberately mixing patient cohorts in the PACE trial? Against the
evidence that mixing study populations is inadvisable, the PACE trial is mixing at least three different groups of
patients.