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

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APPENDIX I: Dr Tony Johnson, Deputy Director of the MRC Biostatistical Unit, Cambridge
The UK ME/CFS community noted with some surprise the involvement of Dr Tony Johnson in the PACE
Trial because his published views on psychiatric trials are already known. In 1998 he published a major
review entitled “Clinical trials in psychiatry: background and statistical perspective” (Statistical Methods in
Medical Research 1998:7:209‐234) in which he noted the existence of studies produced by psychiatrists that
claim “inordinate enthusiasm” for certain therapies.
Dr Tony Johnson is the son‐in‐law of Dr Elizabeth Dowsett, who was formerly Medical Advisor to and
President of the ME Association. Correspondence exists between an ME/CFS sufferer and Dr Johnson
himself, but which also involves Dr Anthony C Peatfield, Head of MRC Corporate Governance and Policy.
The correspondence arose from Johnson’s Quinquennial Report for the MRC’s Biostatistical Unit’s progress
report for the years 2001 to 2006 that was placed on the website of the MRC Biostatistics Unit (BSU).
Taken from the BSU’s Quinquennial Review of 2006, one part of which states: “Our influence on policy‐
makers has largely been indirect, through scientistsʹ work on advisory committees, in leading editorials, in
personal correspondence with Ministers, Chairs or Chief Executives (such as of Healthcare Commission or
NICE), Chief Medical Officers and Chief Scientific Advisers, or through public dissemination when the
media picks up on statistical or public health issues that our publications have highlighted.
“The Unitʹs scientists must remain wary of patient‐pressure groups. Tony Johnsonʹs work on chronic fatigue
syndrome (CFS), a most controversial area of medical research, has had to counter vitriolic articles and
websites maintained by the more extreme charities and supported by some patient groups, journalists,
Members of Parliament, and others, who have little time for research investigations”.
This contention that “CFS” research is beset with vitriol and “extreme” charities was re‐iterated by Johnson
himself in his own Report within the Quinquennial Review; under “Chronic Fatigue Syndrome (CFS), with
P White, T Chalder (London), M Sharpe (Edinburgh)”, Johnson’s Report stated:
“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. In response to a DH (Department of Health) Directive, MRC
called for grant proposals for investigations into CFS as a result of which two RCTs (PACE and FINE) were funded
and have started despite active campaigns to halt them. I am part of the PACE study, a multi‐centre study comparing
cognitive behaviour therapy, graded exercise training, and pacing in addition to standardised specialist medical care
(SSMC), with SSMC alone in 600 patients. I have been fully engaged in providing advice about design of PACE and I
am a member of both Trial Management Group and Trial Steering Committee. I am not a PI (Principal Investigator)
because of familial involvement with one of the charities, a perspective that has enabled me to play a vital role in
ensuring that all involved in the PACE trial maintain absolute neutrality to all trial treatments in presentation,
documentation and assessment”.
Johnson’s Report on “CFS” research rang alarm bells within the ME/CFS community, since it openly stated
that he, personally, had a “vital” role to play in ensuring what ought to have been taken for granted in any
MRC trial, namely the “absolute neutrality” of the PACE trial.
Upon seeing this on the MRC Biostatistics Unit’s (BSU) website, an ME/CFS sufferer wrote first to the MRC
Biostatistics Unit and then to Dr Johnson himself, requesting the names and details of all the charities,
patient groups, journalists, Members of Parliament and “others” who have little time for research
investigations, together with references for all the vitriolic articles and websites mentioned on the MRC BSU
website.