Today’s Independent on Sunday publishes a letter signed by 27 medical
professionals -- who may be described as supporters of the psychosocial
model of ME/CFS -- in which they refer to the harassment of some researchers
working in the field.
It is regrettable that the wholly unacceptable actions of a few people have
not only undermined the efforts of those who, for many years, have sought to
engage scientifically with proponents of the psychosocial model but have
tarnished the reputation of all ME/CFS sufferers. Further, it has allowed a
narrative to develop, namely that ME/CFS patients are prejudiced against
psychiatry and are resistant to the possible role of psychological factors
in their illness. A siege-like mentality has developed between patients and
doctors and it is essential, if progress is to be made, to move beyond this
impasse towards a constructive dialogue based on evidence, so that if the
psychosocial model is found wanting, a commitment can be made to look for
alternative causal mechanisms.
Much of the recent frustration has stemmed from the presentation of PACE
Trial data in The Lancet (published online February 18
2011) and other
journals. For example, in their accompanying editorial in The Lancet,
Bleijenberg and Knoop wrote:
|"PACE used a strict criterion for
recovery...In accordance with this criterion, the recovery rate of cognitive
behaviour therapy and graded exercise therapy was about 30%"
another journal reporting "a
recovery rate of 30-40%" (BMC
Health Serv Res. 2011; 11: 217, three of the authors being signatories to
the letter to the Independent on Sunday).
Both these reports are wrong, because no recovery data from the trial have
been published, and although The Lancet's senior editor, Zoe Mullan,
acknowledged this error and promised to publish a correction, to date (22
months after publication) no correction has been issued, allowing this
misrepresentation to continue.
The above are but two of many well documented discrepancies surrounding the
publication of selective results of the PACE Trial.
In their letter, the signatories say that the harassment: “risks
undermining research, preventing the development of new treatments and
discouraging specialist clinicians from entering the field. We fear that
this may have resulted in patients not receiving the best treatments or
Quite apart from the fact that the signatories’ favoured treatment may not be
the best for people with ME/CFS, the signatories make no distinction between
“extremists” and those who continue to present reasoned, evidence-based
critiques of the psychosocial model. Moreover, they appear to have conflated
criticism of a particular psychiatric theory with the wholesale rejection of
psychiatry per se: being
critical of certain psychiatrists’ beliefs about the causation of ME/CFS is
not the same as being anti-psychiatry.
The psychosocial model has been subject to challenge because when its
predictions were tested empirically, such as in the FINE and PACE Trials,
objective data from these trials show clearly that ME/CFS is not perpetuated
by dysfunctional thinking and deconditioning as the model posits.
People are angry,
but that's because a small group of psychiatrists who have consumed such a
large share of research funding for twenty years have acted in a way that is
perceived to be wholly unscientific ie. when the evidence (even from their
own studies) shows their ideas to be wrong, they either ignore the evidence
(eg. FINE), or appear to misrepresent it (e.g. PACE), and the system which is
meant to protect against this - academic peer review - has completely failed
to prevent the dissemination of papers which contain egregious errors.
It is also the case that many patients
and clinicians alike feel let down by the wider scientific community for not
speaking out against apparent abuses of process such as the post
hoc revision of primary
outcome measures in the PACE Trial which made it possible for a participant
to deteriorate after treatment but still be described as “recovered”.
such a situation applied in a drug trial there would, rightly, have been an
For the proponents of the psychosocial
model to continue to ignore the biomedical evidence from world-class experts
such as Drs Nancy Klimas, Mary Ann Fletcher, Anthony Komaroff, Kathy and
Alan Light and Dan Peterson must surely conflict with a clinician’s first
duty to patients, as rejection of that evidence may carry the risk of
As Professor Komaroff wrote in Nature Reviews Neuroscience, September 2011:
of the documented abnormalities involve the central and autonomic nervous
systems. In my experience, most sceptics are unaware of the extensive
literature citing such abnormalities and become less sceptical upon reading
Professor Klimas was equally clear about those who dismiss the biomedical
evidence, saying at the IACFSME Conference in September 2011:
at the studies of many patients – and they tell you the same. It is not
difficult. I mean immune findings in ME / CFS is proved. It is not
controversial, and it is not just a hypothesis. There is immune
activation, it is dysfunctional cells and a significant
degree of malfunction of the immune system….I have no difficulty (saying)
with great certainty that the immune system in ME/CFS is not working as it
Given the well-established body of
biomedical evidence and the failure of CBT and GET to produce objective
benefits, people diagnosed with ME/CFS (and the clinicians who support them)
struggle to comprehend the continued propagation of the doctrine that they
can be cured and be returned to employment by psychotherapy, when the
evidence from the psychosocial studies shows this is not the case.
It is time for a more productive
dialectic so that patients can receive treatment and support based on sound
evidence and researchers can work without fear.