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

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“I have advised many clinical trialists on the setting‐up of organisational structures including Steering and Data
Monitoring Committees, and Management Groups”.
Some of Dr Johnson’s credentials, however, remained on the MRC BSU website: “I present my eighth and final
Unit review report since joining MRC Neuropsychiatric Research Unit in 1968; a period exceeding 37 years during
which I have been very privileged to engage fully in the research programmes of MRC, be a co‐editor for 18 years of the
first major journal in medical statistics (Statistics in Medicine), found an international society (Society of
Pharmaceutical Medicine), draft the Constitution for another (International Society for Clinical Biostatistics), and
contribute to UK Government, European, and International working parties and committees.
“In view of my retirement in September 2008 I describe only my research programme over the past five years without
reference to the future”. The following text was removed: “but note that none of my projects will terminate in the
near future, for they will be continued and expanded by others, many of whom I have trained for that purpose. My role
within MRC changed radically in 2001, resulting in my switching from independent band 2 to core scientist. My
expertise in clinical trials was needed to expand the activities of the Department Without Portfolio into
areas such as mental health (and) chronic fatigue, currently the focus of government health policy”.
From the above, it can be seen that Dr Johnson was an influential figure in the MRC BSU and, as Deputy
Director, his in‐house review was a substantial document. For the MRC Head of Corporate Governance and
Policy (Dr Anthony Peatfield) to have referred to Johnson as a mere “member of staff” and to imply that the
comments in question were not connected to anyone of significance at the MRC seems to indicate an
intention to avoid accountability and to purposefully mislead the public. Johnson’s Report was an important
official communication from one professional to others. Coming from such a senior figure within the
MRC, and considering his level of involvement with the PACE trials, Johnson’s adverse comments about
CFS would have carried considerable authority and influence.
Moreover, it seems that Dr Johnson may have been advising the Wessely School psychiatrists how best to
obtain MRC funding from the advantage of his influential and knowledgeable position as a core MRC
scientist through the close links he had forged with the Institute of Psychiatry.
Disturbingly, it seems that in his material which was removed from the MRC website, Johnson revealed that
he had used data (which he described as a “perspective” that he had been able to obtain through “familial
involvement with one of the charities”) to assist in the design of the PACE trial. If this is so, what is he
implying? The PACE trial is about challenging ME/CFS sufferers’ beliefs: is Johnson somehow using the
“perspective” he has obtained through “familial involvement with one of the charities” to design a trial
whose aim is to promote a management regime that has already caused so much harm to members of that
charity?
Most disturbingly of all, as mentioned above, Johnson stated that he was playing a “vital” role in
maintaining “absolute neutrality” by “all involved in the PACE trial”. This clearly indicates that Johnson
believed that without his own “vital” role, “absolute neutrality” would not be achieved.
The word “vital” means “essential”, so was Johnson effectively conceding that he knew the PACE trial
was fundamentally biased but that he – as an individual ‐‐ was dealing with the people involved in the
trial who are known to be intent on dismissing “ME” and on promoting their own beliefs about the use
of CBT/GET for those with “CFS”? Why is it only his own “vital” role that will ensure the “neutrality”
of the PACE trial?
Having taken seven months to reply to a letter that had been sent to him personally, on 7 th November 2006
Johnson attempted to exonerate himself, stating that the views he had expressed were not intended to
represent the views of the MRC and that they had been “the initial version of my progress report”, and he
wrote: “I regret the words that I used”.