The Oxford CFS Criteria is dead. I feel no compulsion to play my own devil’s advocate on this assertion. If it was not enough that the AHRQ removed studies based on this criteria in considering effective treatments for ME/CFS, then perhaps simple reality will suffice. If you diagnose an illness from a huge cohort of patients who have objectively measurable adverse reactions to exertion based on a single, self reported symptom, things will go wrong very quickly. It is a mistake to dismiss all associated symptoms as de-conditioning and plod on regardless. It is a mistake to ignore patients’ reports of harm from treatments that have been devised for an ill-fitting diagnosis and attribute all failure to non-compliance on the part of the patient or lack of professionalism from those who deliver the treatment.
I have lost count of the number of fellow sufferers who have inspired me when I face difficulties as an ME/CFS sufferer. The strength, perseverance, devotion to life and living it as productively as possible is almost overwhelming in the ME/CFS community. To think for even a moment that such people would be non-compliant if the only thing they needed to do to get better was to complete graded exercise courses is offensive. We push through our symptoms for as long as possible on a daily basis. This is how we get anything done at all. In fact it is my carer who usually stops me upon noticing my pale face and breathlessness following a seemingly simple, low-activity task.
The idea that the only criticisms of PACE come from a clique of non-compliant patients residing in toxic online communities is dead. There were 42 professional signatories on the open letter to The Lancet. Some of them had been personally inspired by the intrepid nature and resourcefulness of sufferers in those communities who, at great personal cost, exposed the deep and numerous flaws within the PACE trial.
On the eve of the rightful and just release of the PACE trial data, you released an analysis of the PACE trial results based on your original criteria, showing (and I must emphasise) as many patients and advocates have repeatedly stated that the patient improvement rate on CBT/GET is significantly lower than reported in the original study. One might easily construe this as attempting to put on a second pair of pants as a defence when expecting to have them rather publicly pulled down.
It is also fair to ask just how the so-called independent Cochrane review did not come to pass without your intervention. To me this seems telling. It speaks to a lack of confidence in the evidence for the effectiveness of CBT/GET as a treatment for ME/CFS. Good science in such an arena should not require a champion.
There is now objective and measurable evidence that ME/CFS patients are harmed by exertion. There are both numerous and detailed patient reports of harm from CBT and GET. There is an arguably negligent dearth of harms reporting on the use of CBT and GET in ME/CFS. There is consistent and exciting new research on physical abnormalities in the ME/CFS patient cohort defying any conceivable psychiatric explanation – all achieved by passionate highly qualified researchers who have so little to gain from pursuing this line of inquiry other than the thrill of the mystery itself and the desire to provide hope to sufferers, and all despite a deplorable lack of funding.
I call on Peter White, Trudie Chalder and Michael Sharpe to a pursue a complete retraction of their PACE trial paper from the Lancet and all associated subsequent papers from their relevant journals. I call on them to demand a fully open and patient-collaborative independent assessment of CBT/GET that includes a tireless pursuit and collection of harms data. Without such data, the safety of the patients — including children — participating in these trials is of paramount concern.
The time for decency in the face of the overwhelming failure of PACE for many has arguably passed you by, but I make this appeal regardless. Every day there is a new ME/CFS patient. Today you can spare that patient from harm. You can spare them from being accused of malingering by their own friends and family. You can spare them from wrongful imprisonment in a psychiatric ward. Today you can set ME/CFS research on an expedited path that leads to real treatments and ultimately a cure.
End this tragedy now.
Haven’t yet signed the global support petition and UK petition to end trials for GET and CBT? 10,000 UK signatures guarantees a government response. Not a citizen of the UK? Sign the global support petition to show UK government officials and responsible ethics committee members that the citizens of the world are aware of the potentially unsafe UK research trials on ME patients.
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To learn more, visit stopGET.org.