Miller, medical adviser to AfME, made a speech at Gresham's College, available here http://www.gresham.ac.uk/lectures-a...-fatigue-syndrome-not-just-tired-all-the-time I have sent him a response if anyone is interested. I'll post his reply when I receive one. My email: Dr Miller, I read with interest your speech to Gresham's which I downloaded with the accompanying powerpoint presentation from here http://www.gresham.ac.uk/lectures-a...-fatigue-syndrome-not-just-tired-all-the-time . I would question a number of points you raised. I am hoping you could clarify a few things. First, you say that after the First World War 'the condition was often referred to as neurasthenia or effort syndrome'. As you know, neurasthenia is listed separately from ME by the WHO. It is considered a psychological illness whereas ME is listed as a neurological illness. Could you say, please, why you consider neurasthenia is (or was) the same 'condition' as ME? What evidence do you have that there is any link between neurasthenia after WW1 and ME today? Do you accept the WHO definitions? Why, when talking about ME as a representative of a charity which claims to speak for patients with ME, would you link the illness to neurasthenia? Second, you say 'there are no characteristic abnormalities on physical examination... and no characteristic laboratory abnormalities'. While this statement is true so far as it goes, it is also true that many studies have found measurable physical changes in patients with ME. Could you say, please, why you didn't feel it was necessary to draw attention to these studies? Wouldn't most patients with ME, whom you claim to be representing, want such studies to be mentioned? Third, you claim 'there is some evidence' for the effect of cognitive behaviour therapy (CBT). The recent PACE trial, described by the principal investigators as 'definitive', found no evidence CBT makes any objective difference to patients with ME. Could you explain, please, what evidence shows CBT is an effective therapy? Are you saying that PACE is wrong? What evidence would you have to support such a statement? Fourth, you also claim there is some evidence for the effect of graded exercise therapy (GET). PACE showed there is no evidence to support the model which had been used to justify GET for 25 years, 'physiological deconditioning'. In measurements of physical fitness, the GET group declined and performed worse than all other patients. GET is now considered a 'behavioural graded exposure therapy'. While it is true that the GET group in PACE showed improvement in the 6-minute walk somewhat greater than in the control groups, there have been criticisms made of the study. First, the level achieved at the end of the trial was still substantially below that of a normally active adult. Second, as you acknowledge, ME patients suffer post-exertional malaise, what you call 'pay-back', and so their performances drop off markedly on the second day. There was no attempt in PACE to control for this possible decline. Third, patients in the GET group were 'taught to the test'. Some improvement was likely within the limits of the illness. The larger part of the improvement, such as it was, came in the first weeks: patients may only have been being helped to find the ceiling imposed by their illness. Fourth, patients report only a limited amount of energy in the day. There was no attempt to see if patients were walking a little further but doing less generally. Could you say, please, why, given these issues with PACE, it is safe to say GET is 'therapeutic'? Should these questions simply be ignored? Or do you have answers to them? Fifth, you compare the use of CBT in ME with its employment in other chronic conditions such as cancer and rheumatoid arthritis. Are you saying that CBT is used to treat cancer and rheumatoid arthritis? Could you say, please, where you have come across such claims? If you are not saying CBT is used to treat cancer and rheumatoid arthritis, or anyone claims it does and could as some do with ME, then are you not making a false and misleading comparison? If you don't accept the comparison is false, could you explain why it is not? Sixth, you say CBT is 'unlikely to cause any harm'. Anything which has the power to do good, as proponents claim for CBT, has the power to do harm. Where therapists and patients embark on a course of therapy, having been told it is effective, but fail, then harm is done to both therapist and patient. Offering false hope is a harm. Patients with ME have severely limited resources: to use up those resources on an ineffective therapy is a harm. Wasting money on ineffective therapy is a harm. Mental health is seriously under-resourced; to take therapists away from areas where their work may have some effect is a harm. To claim that a psychotherapy is successful when it is not, distorts public policy and popular perception of the illness and is a harm; in the eyes of patients with ME, a considerable harm. Could you say, please, why you think these harms can be ignored? Seventh, on frame 25 of the powerpoint display, you describe the two views of ME as 'extreme'. Would you consider the same views of cancer or arthritis or PTSD as extreme? Do you consider these illnesses in themselves have elements of both the physiological and psychological? If not, could you say why you believe ME should be considered different from other illnesses? Eighth, on frame 26, you say that the debate over the psychological and physiological nature of ME is 'sterile' and seem to suggest that those who raise the question are separating mind and body. Again, I would ask if you apply the same reasoning to anyone who says cancer in itself is physiological or PTSD is psychological? Do you recognize a distinction between, for example, PTSD and cancer? If so, could you explain, please, why the same distinction should not be applied to ME? If not, could you confirm that you would support a dominant role for psychiatrists and psychologists in deciding priorities and clinical guidance for cancer treatment and research? That the chief adviser to the government for cancer should be someone who considers the illness to be psychological? Popular perception of the illness and public policy are shaped by its nature. If ME is psychological, then spending money on a possible biological cause is wasted. If ME is biological then PACE was a scandalous waste of money. Are you saying that this does not matter? Between 1990 and 2011, the MRC spent nothing on biological research of ME. £5million was spent on PACE (£3million from the MRC). Would you support the whole of MRC research money for cancer being spent on trials of psychotherapy? If not, could you say why not and why ME should be treated differently? Hundreds of studies have shown measurable changes in patients with ME. Could you say what evidence there is which suggests ME is psychological? Ninth, on frame 27, you say 'stress, toxin, life events' 'precipitate' ME. The Oxford criteria recognize post-infectious fatigue, ie ME, as a distinct subset of CFS. Could you explain, please, why you reject this distinction and what evidence you have that ME is 'precipitated' by stress? Toxin? Life events? Tenth, on frame 27, you claim that 'illness beliefs, law suits, searching for a cause, extremes of activity' 'perpetuate' ME. Could you explain, please, what you mean by 'law suits'? Again could you give evidence for the role in 'perpetuating' ME of 'illness beliefs'? Law suits? 'Searching for a cause'? 'Extremes of activity'? Eleventh, on frame 30, you link 'CFS' to 'other MUS'. Could you say, please, what evidence leads you to link ME with IBS? Tension headaches? Fibromyalgia? Chronic pain syndromes? Twelfth, throughout the presentation you use the term 'CFS' (eg frames 25, 33 and 46). On frame 9 you seem to suggest that ME is synonymous with neurasthenia, Effort syndrome and CFS. WHO recognize ME as a distinct illness, which is also current UK government policy. Do you accept this recognition? Could you say why you use the terms synonymously? Do you recognize ME as a discrete viral, neurological illness? Finally, you are described as the medical adviser to 'Action for ME' and the powerpoint presentation carries the 'Action for ME' logo, is what you say in both the lecture and the presentation official policy of the charity? Does 'Action for ME' recognize ME as a discrete viral, neurological illness? You seem to be referring throughout to 'CFS'. Is that the policy of 'Action for ME'? If so, would it be more appropriate to rename the charity 'Action for CFS'? Wouldn't that be a more accurate reflection of the charity's approach and aims? I understand you may be busy and these are a lot of questions, but I'm sure you agree it is important that 'Action for ME' has a clear, evidence-based position. Since the speech has been made available online, you were there as a representative of a charity which claims to speak for patients with ME, and several patients have expressed an interest, I shall paste this email online and publicize a link. I shall do the same for your response. I trust that is acceptable. I look forward to hearing from you, John Peters.