Journal of IiME Volume 1 Issue 2 www.investinme.org The PACE TRIALS (continued) 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 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. There was no acknowledgment from either the MRC BSU or from Dr Johnson; however just after the letters had been sent to the MRC, it was observed that much of Dr Johnson’s Report had been removed from the MRC BSU website, indicating that this was a matter of some importance to the MRC. In statistical terms, the deletions from Dr Johnson’s Report amounted to a substantial 42% of the entire Report. Almost a full month later, a letter dated 10th October 2006 was received from Dr Anthony Peatfield, which said: “You refer to some text that was recently published on the website of the MRC Biostatistics Unit. The comments ME Patient Carer’s Story Birgitte is put into the nursing home in August 2004. The head nurse receives a treatment manual for seriously sick ME patients (written by the Norwegian ME organization) and promises to follow this. At this point in time Birgitte was able to sit in a wheel chair, could use the toilet and could move her arms and legs. However, she is put under conditions of extreme stress in the nursing home. Due to a total lack of knowledge and competence of this illness the nurses and the nursing home doctor still think she has a psychiatric illness. The treatment manual from the Norwegian ME organisation is, therefore, not being used and the patient is getting more and more ill. The leaders of the nursing home say it is the patient's own fault and that she is manipulating the situation. The patient says she cannot tolerate noise and light (something very common for ME sufferers). She has to fight, explain, manage, and several nurses are unfriendly and rough. – Leiv (carer from Norway) Invest in ME Charity Nr 1114035 ME Story I have applied for DLA (probably one of the hardest things I have ever done) and have been rejected, despite being mostly housebound. Do these people think that I want to be like this? That to give up my future is an easier option? Or do they think that behind their backs I am secretly earning money and living it up? Why do they not think that it would be a good idea to ask for a report from a GP when assessing my claim? How do they think a visiting doctor can assess my capabilities by sitting in my lounge with me for an hour? So many questions and so few answers. - Alice to which you refer were drawn from a progress report produced by an individual member of staff. The comments have now been removed from the website. I would like to take this opportunity to apologise, on behalf of the MRC, for any offence these comments may have caused either to yourself or any other individual. While the comments were illjudged, it was not the intention of the individual who wrote them, nor the Unit in publishing them, to cause offence”. Curiously, Dr Peatfield further advised that should anyone else contact the MRC about this same matter: “we shall reply to any further requests such as your own as indicated in the third paragraph, above”, meaning that he would simply offer an ‘apology’ regardless of what information or clarification was being requested. Peatfield’s reply implied that those damaging comments were not made by anyone of significance at the MRC, when in fact they had been written by the Deputy Director of the MRC Biostatistics Unit who was intrinsically involved with the actual design of the PACE trial. Out of ten Reports that constituted the Quinquennial Review, the only individual report from which sections were removed, including the Abstract, is that of Dr Johnson. he Abstract could not, however, be removed from the Review Index, where all ten Abstracts by different individuals are located, with links to their full documents. In the case of Dr Johnson’s “re-edited” document (see below), the link to the Abstract no longer works, but the link works for all the other Abstracts. Was this a ploy by the MRC to conceal Johnson’s Abstract, with its references to his close association with the Institute of Psychiatry (see below)? (continued on page 53) Page 52/72

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