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by September 19, 2011
We the undersigned are co-signatories to the letter (below), "After PACE, a firm foundation for M.E. as a discrete illness," written by Dr John H Greensmith, Founder, ME Free For All.org, 19 March 2011.
I have written a letter in response to the PACE trial, in particular, with some comments about the way it and the whole catalogue of research, using the variable hybrid CFS/ME criteria, make it untrustworthy. I suggest new foundations for research, using a probability index of M.E. that is being developed to identify M.E. as a discrete illness, with an underlying physical cause, dissociated from the polluting CFS/ME.
Headline reporting, around the world, of the results and conclusions of the PACE trial for M.E.(White et al., Lancet, 18 February 2011), sometimes endorsed with supportive comments on inside pages, including letters to editors from groups purporting to represent M.E. (Myalgic Encephalomyelitis) give the impression that there is universal accord. Nothing could be further from the truth; it has caused the biggest rift ever amongst people affected by M.E.
In the interests of scrupulous fairness, we seek the same space and prominence to present almost diametrically opposed views that people with M.E. should not take Cognitive Behaviour Therapy (CBT), do Graded Exercise therapy (GET) or avoid common sense pacing. Our advice is based on all research evidence to date - astonishingly, including that of the same people who support PACE and advocate referrals to clinics which offer a mix of only these two treatments - and, most importantly, hard experience of M.E. sufferers, for whom they have not been effective and made a majority worse, some irreversibly.
PACE exemplifies everything that is rotten in the field of M.E. research - including, flawed experimental design, polluted data set and lack of objectivity of investigators - that shakes the whole catalogue of research, which uses the artificially constructed, Chronic Fatigue Syndrome hybrid CFSME, Studies are not comparing like with like and, most often, there were very few, if any, people with M.E. included in the study, yet the conclusions are applied to them.
Ours is not the destructive act of one demolishing a building and walking away, leaving a pile of rubble. Rather, it is a constructive approach, laying solid foundations for trustworthy research to be built upon, which may suggest treatments towards recovery, in which faith could be placed by practitioners and patients alike. The keystone is a probability index of M.E. as a discrete illness, which is being developed to be used as a research tool and for establishing a diagnostic test. This probability index may be continuously refined but, even in its most rudimentary form, it would be superior to all existing criteria for identifying cardinal symptoms required to be present for M.E. and, radically, it bansihes "fatigue" both alone and when sandwiched between "chronic" and "syndrome." Henceforth, the M.E. sample in any research could not be polluted by people having conditions bundled in the collective diagnostic group CFS, from which M.E. would now be excluded.
In the meantime, we call upon primary doctors not to refer M.E. patients to clinics for CBT or GET and all healthcare professionals not to act upon these treatment recommendations for fear of breaching a basic principle of the Hippocratic Oath, "First, do no harm" and for people speaking on behalf of organisations, who support PACE and its ways, to remove the M.E. part from their name, or consider a change of employment. Yours sincerely firstname.lastname@example.org Dr John H Greensmith ME Free For All.org Co-signatories as named in the petition To Co-sign letter: After PACE, a firm foundation for M.E. as a discrete illness (19 March 2011) ---------------------------------------------------------- If you wish to co-sign this letter please sign the petition here
May I suggest that you sign your name; whether you are a group officer, M.E. sufferer, carer, doctor, researcher etc.; the name of the publication (s) you would like the letter to appear and, if you are able, a considered, intelligent, comment based on scientific evidence or experience that will give M.E. research the dignity and integrity it deserves.
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