Journal of IiME Volume 1 Issue 2 www.investinme.org The PACE TRIALS (continued) Both the Countess of Mar and Earl Howe were seasoned debaters in the House of Lords and both were profoundly disturbed at what occurred at that meeting, the outcome of which was fruitless. Professor Blakemore was accompanied by Elizabeth Mitchell of the MRC and she did most of the talking. It was apparent that as far as the MRC was concerned, Professor Wessely is greatly revered and what he says about “CFS/ME” will be accepted. It was also apparent that the MRC’s mind had been made up and was firmly closed. There was to be no consideration of the biomedical evidence that proved Wessely et al to be wrong. On 10th May 2004, an article called “Why won’t they believe he’s ill” by Jerome Burne in The Independent quoted the Countess of Mar: “A campaigner who has long opposed the purely psychiatric approach is scathing about the MRC trials. ‘They are a farcical, cynical exercise and a huge waste of money’ the Countess of Mar said”. The article continued: “ ‘Whatever their findings’, says Dr Vance Spence, Senior Research Fellow at the University of Dundee and a leading scientist in the field, ‘they [the PACE trial] won’t tell us anything useful about the best way to treat CFS/ME because they are not properly selecting patients with the disease. There is widespread concern about this’. Concern about patients’ dissatisfaction with the MRC trials The disregard of the illness was reflected on a practical level – they said that if I recover from exercise in ten minutes then I am working at the right level. I abided by this rule and later crashed due to delayed and accumulated effects. How this is ethical I do not know. In January 2005 there were disturbing accounts posted on the internet by participants in the FINE trial, and people made known their wish to withdraw. One person who had been forced to suspend from university gave the reasons {see Invest in ME page - http://www.investinme.org/Article-015A%20FINE%20TrialsAlice.htm} “Data they collected about me was misleading. Only questionnaires were used; the questions were leading and did not reflect my true feelings. Also, the researchers spent 2-3 hours with me each time, which was so exhausting that I didn’t really know what my replies were. The trial totally disregards ME/CFS as an illness. It is based on a theory that symptoms are due to deconditioning and maladapted beliefs about exercise. The disregard of the illness was reflected on a practical level – they said that if I recover from exercise in ten minutes then I am working at the right level. I abided by this rule and later crashed due to delayed and accumulated effects. ‘Whatever their findings’, says Dr Vance Spence, Senior Research Fellow at the University of Dundee and a leading scientist in the field, ‘they won’t tell us anything useful about the best way to treat CFS/ME because they are not properly selecting patients with the disease. There is widespread concern about this’ ”.In a letter dated 11th May 2005, Professor Blakemore confidently claimed that the PACE trials “were peer-reviewed and awarded funding on the basis of the excellence of the science”. How this is ethical I do not know. The therapist had very selective hearing and she would adapt whatever I said to fit into what she wanted to hear (I have examples). The therapist was critical of me and was unsupportive. I believe the consent process was unethical. I was not aware what I was letting myself in for (they did not explain the details of the intervention until after I had consented). In addition, the de-conditioning theory was presented as fact (I have since read research that goes against the deconditioning theory). It frightens me to think that this research will be used to support clinics offering this in the future”. Invest in ME Charity Nr 1114035 (continued on page 67) Page 66/72
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