Journal of IiME Volume 1 Issue 2 www.investinme.org The PACE TRIALS (continued) Amongst large amounts of text removed from Dr Johnson’s Report were details of exactly how influential Dr Johnson has been within the MRC and with the Institute of Psychiatry, particularly in terms of securing MRC funding, along with other details of his close connections to key individuals involved in the PACE trial. The following extracts are taken from the Abstract, which was removed in its entirety from the body of Dr Johnson’s Report: “Abstract “I have initiated, developed, and collaborated in both clinical trials and epidemiological studies in four challenging medical specialties working with a large number of collaborators geographically dispersed throughout UK, Europe, and beyond. These have resulted in major advances in the understanding of the efficacy of cognitive therapy. “Over many years my programme has contributed to the successful completion of the three largest clinical trials, all of major international importance. My programme will be exploited in the future in further collaborations with the pharmaceutical industry. “I have enabled a successful collaboration linking the research programmes of this Unit with the MRC Clinical Trials Unit (MRC CTU) in London, that has resulted in the establishment of a new Clinical Trials Unit dedicated to mental health and neurological sciences at the Institute of Psychiatry in London. The linkage has enabled my expertise in clinical trials to be extended to chronic fatigue syndrome and the setting-up of a major MRC study to evaluate the efficacy of four different interventions. “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 Invest in ME Charity Nr 1114035 fatigue, currently the focus of government health policy”. From the above, it can be seen that Dr Johnson is an influential figure in the MRC BSU and, as Deputy Director, his in-house review was a substantial document. 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. 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 7th 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 writing: “I regret the words that I used”. 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 (continued on page54) Page 53/72

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