Today’s Independent on Sunday (2nd Dec.2012) 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%”, with 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 care”.
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 (eg. 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”. Had such a situation
applied in a drug trial there would, rightly, have been an outcry.
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 iatrogenic harm.
As Professor Komaroff wrote in Nature Reviews Neuroscience, September 2011:
“Many 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 it”.
Professor Klimas was equally clear about those who dismiss the biomedical
evidence, saying at the IACFSME Conference in September 2011: “Look 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 should”.
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.
(Permission has been given to repost.)