MAGICAL MEDICINE: HOW TO MAKE AN ILLNESS ... - Invest in ME

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In his submission to the All Party Parliamentary Group Inquiry into NHS service provision for people with
ME (Co‐Cure ACT 1 st October 2009), Tom Kindlon suggests that people with ME are being treated as
second‐class citizens:
“The safety of treatments and interventions is one of the most important issues, if not the most important issue, in
medicine. With many interventions such as pharmaceutical drugs, there are mechanisms in place so that if adverse
reactions occur, this information is noted and attempts are made to collate the information…for example, (the) yellow
card scheme, where either prescribing professionals or patients themselves can report adverse reactions. Unfortunately,
with non‐pharmaceutical interventions (such as CBT/GET), such options are not there. Currently, either the patient
is blamed e.g. ‘they did not do it correctly’ or it is seen as the fault of the individual practitioner (‘they did not do it
properly’). Given there is no yellow card scheme (for interventions such as CBT/GET), what data do we have? The
information from patient surveys is the obvious answer. It is important that professionals are told of the abnormal
response to exercise in ME/CFS. I do not see much evidence that professionals are being told of the abnormal
response to exercise in ME/CFS patients. It is also important that patients are given the risks associated with
treatment. This does not seem to be occurring routinely at the moment. This means that patients cannot give informed
consent to the treatments they are trying. This suggests that people with ME/CFS are being treated like second‐
class citizens, not worthy of the protections that are offered to other patients. This needs to change”.
It does indeed need to change, but it seems that some psychiatrists refuse to see themselves as the rest of the
world sees them, or to see how history repeats itself through their own serious shortcomings. As Dr Derek
Pheby, Director of the National CFS/ME Observatory, points out:
“…to assign someone to the wrong category on the basis of a false understanding of the nature of the illness
and its context is an example of a well‐known phenomenon which psychologists term ʹfundamental
attribution error’ “ (InterAction 2009:69:16‐17).
It seems clear that the MRC is involved with a fundamental attribution error that, according to Dr Byron
Hyde, is the error of our time (The Complexities of Diagnosis. In: Handbook of Chronic Fatigue Syndrome.
Ed: Leonard A Jason et al. John Wiley & Sons Inc, 2003).
Many points emerging in this current document seem to bring not just the Wessely School but also the
MRC itself into disrepute because they demonstrate how hollow is its alleged commitment to scientific
rigour and its alleged requirement for “high quality research” and “the high scientific standard required
for funding” (letter dated 15 th April 2005 from Simon Burden of the MRC to Neil Brown).
There are some senior NHS Consultants who believe themselves to be infallible and who as a result
harm large numbers of patients.
The MRC PACE Trial appears to be a textbook illustration on the successful purveying of
misinformation and misrepresentation that foster a culture of animosity and contempt for ME/CFS
patients which cannot but be detrimental to many very sick people.
Such animosity, disbelief and contempt towards people with ME/CFS is held by many people to be the
legacy of the Wessely School: as noted above, patients with ME/CFS continue to be neither listened to,
appropriately investigated nor correctly cared for but effectively abandoned, and the MRC PACE Trial
appears to be part of that legacy.
As Christopher Cairns, father of a severely affected daughter, notes: “what I worry about more is the disbelief
factor, which only guarantees years of deep and unabiding misery” (http://cfspatientadvocate.blogspot.com/ ).
It is time for the Wessely School’s legacy to be over‐turned, for this complex disorder to be recognised as
the devastating condition that it is, and for those blighted by it to get the treatment, help and support that