Professor Simon
Wessely once again attempts to defend what has already been
shown to be indefensible, namely his own beliefs about the
nature of ME/CFS, including his belief that graded exercise
therapy (GET) has “an impeccable safety record” (Simon
Wessely; Health in mind and body; The Journal of the Foundation
for Science and Technology: 2011:20:7: 9 –11).
The article
contains so many insupportable assertions that it cannot go
unchallenged.
In his article,
although he does not mention ME as such, Wessely refers to
Chronic Fatigue Syndrome (CFS), but in countless articles
published in medical journals, reports from official bodies such
as the Joint Royal Colleges, in medical textbooks and in the
media, as well as in the PACE Trial literature itself, the
Wessely School insist that ME and CFS are synonymous.
In this latest
article (the publishing of which is perhaps surprising, given
his frequent assertions that he has relinquished his work on
ME/CFS and that he no longer feels safe publishing about the
disorder because of the death threats he has received, and that
he now feels safer in Afghanistan), Wessely conforms to his
track record of appearing to form his conclusions before he has
generated the data to support his conclusions - (he often states
his assumptions and beliefs as though they are established fact;
for example, he has asserted that people with ME benefit from
“adopting the sick role” and from “secondary gain”, and that
what “precipitates” ME is not what “perpetuates” it, all of
which are supposition not supported by data; a further
illustration is to be seen in his study of Vitamin B status in
just 12 CFS patients in which he found evidence of reduced
functional vitamin B status but concluded: “clearly, many
patients with CFS are currently taking vitamin B…with little
evidence of benefit”, yet nowhere does he provide any
evidence that “many” patients are taking supplements with little
evidence of benefit and his final conclusion again fails to
follow from his data: JRSM 1999:92:183-185).
Wessely’s
assertions in his current article are of particular interest
because they provide such clear illustration of his cognitive
biases, for example:
“CFS
illustrates the gap that lies between physical health/illness on
the one hand and mental health/illness on the other”: all
life-destroying diseases affect both physical and mental health,
not just ME/CFS.
“CFS is a
multi-factorial illness”: Wessely does not know this, since the cause remains
unknown.
“To understand
why some people do not get better as the months and years go by,
one has to look at behavioural and psychological factors”:
this is nothing more than Wessely’s assumption; people do not
recover from multiple sclerosis or from motor neurone disease,
so it is telling that he makes an exception only in the case of
one particular classified neurological disorder (ME/CFS): why do
so, unless it is as a face-saving measure because for the last
25 years the Wessely School have rigidly and unscientifically
conflated psychiatric fatigue with ME/CFS?
“The illness is
then a complicated mixture of predisposition, precipitation, and
perpetuation”:
Wessely states this as though it were proven fact, but it is
unproven and his inability to recognise this demonstrates a
fundamental misunderstanding of the nature of scientific
knowledge.
“A landmark trial
on the management of CFS, known as the PACE Trial, was published
recently in The Lancet….Two treatments, graded exercise and CBT,
clearly made a difference, although they were certainly not
‘magic bullets’:not only were the interventions used in the PACE Trial very
far from being magic bullets, the Chief Principal Investigator
himself described them as being “only moderately effective”.
“For those who
appreciate these things, the trial is a thing of beauty”:
for those who appreciate these things, the PACE Trial
-- which cost £5 million -- has been described as a travesty of
science and a tragedy for patients; the conclusions were flawed;
the primary outcome measures were dropped; ratings that would
qualify a participant as sufficiently impaired to enter
the trial were deemed by the Principal Investigators (PIs) to be
“within the normal range” when recorded on completion of
the trial; there were significant conflicts of interest in that
all three PIs work for the insurance industry (whose managers
insist that claimants undertake a course of CBT and GET --
called “rehabilitation” -- which, if people are too ill to do so
or if they know from their own experience that it makes worse
and therefore decline, payments are stopped on the basis that
claimants do not to want to get better); the PIs intentionally
studied a heterogeneous population and it was conceded only
after publication of the results in The Lancet that the
Investigators did not purport to be studying ME; there was a
failure to control the trial; there was downgrading of what
constituted serious adverse events; there were many changes to
the entry criteria; data was not reported and objective outcome
measures were dropped; methods of scoring were changed so as to
produce minimally better results, and the results were blatantly
misreported in The Lancet (see
http://www.meactionuk.org.uk/COMPLAINT-to-Lancet-re-PACE.htm
and see also
http://www.investinme.org/Article425%20Hooper%20Further%20Concerns%20on%20PACE%20Trial%20article%20published%20in%20Lancet.htm).
“We now have
two treatments that we can recommend with confidence to our
patients. However, the story does not quite end there. Patient
groups rejected the trial out of hand, and the internet was
abuzz with abuse and allegations. The main reason for this
depressing reaction was the stigma that attaches to disorders
perceived (rightly or wrongly) to be psychiatric in origin”:
the reason people with ME/CFS reject CBT and GET is because they
do not work, but Wessely refuses to accept this, so he here
provides an explanation already shown by his own research to be
incorrect.
He has previously
written:
“CFS sufferers are also usually portrayed as hostile
to psychological explanation, mental illness, and psychiatry in
general….This study aims to investigate attitudes of CFS
patients to psychiatric illness (and) a comparison group of
patients with rheumatoid arthritis (RA) was chosen….We began
with the following hypotheses: CFS patients have more negative
attitudes to mental illness…(represented by the perceived stigma
of psychiatric illness)…(and) failure to identify emotional
states (alexithymia) contributes to denial of the role of
psychiatric disorders in the aetiology of CFS….Contrary to
our hypotheses and the media accounts of CFS, we found no
evidence that CFS patients are characterized by particularly
hostile attitudes to mental distress….Our study also failed to
demonstrate any overall differences in personality traits that
may underlie negative attitudes to mental illness or
psychiatry….The… alexithymia scores found in the CFS compared
with the RA patients were contrary to our original
hypothesis….There was no difference between CFS and RA patients
in hostility to mental illness….This study provides no evidence
to support the anti-psychiatry tone that is so striking in the
popular literature on CFS”
(Personality and Social
Attitudes in Chronic Fatigue Syndrome. Barbara Wood and Simon Wessely; J Psychsom Res 1999:47:4:385-397).
“If one
obtained identical results to the PACE trial, but this time with
anti-viral drugs, the reaction would have been totally
different. This is exactly what did happen when a very small
trial of a drug that modulates the immune system (and which has
some nasty side effects) was greeted with acclaim from the same
sources that tried to discredit the PACE trial, which tested
interventions with an impeccable safety record”: GET for
people with ME does not have an impeccable safety
record. Indeed, there is abundant evidence from
numerous surveys by ME/CFS charities of almost 5,000
patients that in such patients CBT is ineffective
and that GET is unacceptable and sometimes
positively harmful.
Those surveys include one sponsored jointly by the ME
Association and Action for ME (“Report on a Survey of Members of
Local ME Groups”. Dr Lesley Cooper, 2000). Cooper found that
“
Another survey of 2,338 ME/CFS sufferers (“Severely Neglected:
M.E. in the UK”) was carried out in 2001 by Action for ME; its
preliminary report stated: “Graded exercise was reported to
be the treatment that had made most people worse”; in the
final report, this was changed to stating that
In
June 2007, through Section 16b funding from the Scottish
Government, Action for ME produced a report “Scotland ME/CFS
Scoping Exercise Report”, which found that
74.42% were made
worse by GET.
In
2008, Action for ME published another survey of over 2,760
patients (“M.E. 2008: What progress?”) which found that
one
third had been made worse by GET and that at their worst,
88% were bed/housebound, being unable to shower, bathe or wash
themselves, and that 15% were unable to eat unaided. The Press
Release of 12th May was unambiguous: “Survey
finds recommended treatment makes one in three people worse”
(http://www.afme.org.uk/news.asp?newsid=355).
In 2009, the
Norfolk and Suffolk ME Patient Survey of 225 respondents stated:
“Respondents
The International
Association of CFS/ME recently published an article by Tom
Kindlon (Bulletin of the IACFS/ME: 2011:19(2):59-111: Reporting
Harms Associated with Graded Exercise Therapy and Cognitive
Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome) that details
the high rates of adverse reactions to
exercise, as well as dissecting the PACE Trial in relation to
the heterogeneity of subjects, the tracking of adverse events
and the lack of objective outcome measures.
As Ed Lewisohn
correctly points out in correspondence relating to the Frenchay
Hospital’s clinic at Bristol:
“You refer to ‘Frenchay
Hospital’s specialist chronic fatigue, or ME clinic’, but ME is
an incurable neurological condition and cannot be synonymous
with chronic fatigue. Chronic fatigue syndrome is treated by
psychiatrists with graded exercise therapy, but if exercise
makes (it) better, then that condition is not ME….But
There is thus an
abundance of empirical evidence that GET can result in high
rates of adverse effects.
Why is it that the
Wessely School, who claim to be so committed to evidence-based
medicine (EBM), are permitted to continue to disregard the
evidence that proves them to be wrong about the nature of ME and
about the efficacy of GET in those suffering from it?
The answer may be
because, like so many of the Wessely School myths, EBM does not
actually exist.
In 2009 Bruce
Charlton, Professor of Theoretical Medicine at the University of
Birmingham, clarified the facts in relation to EBM:
EBM, however, has
proved invaluable to the Wessely School in the perpetuation of
their own myths about and management of ME/CFS, to the advantage
of both the state and the insurance industry.
Despite the
relentless determination of the Wessely School to claim ME/CFS
as a functional somatoform disorder (in his latest article,
Wessely reiterates his claim that: “the greater the number of
symptoms, the more likely the patient was to develop a mood or
anxiety disorder”), medical science is at last ensuring that
the Wessely era is coming to an end.
Whilst XMRV is now
thought to be a laboratory contaminant (and the triumphant glee
of those who rejoiced at this is to be greatly deplored), the
role of a retrovirus has not yet been resolved: indeed, Dr Ian
Lipkin of Columbia University and chief virus-hunter for the NIH
was reported on the Wall Street Journal blog on 27th
December 2011 by Amy Dockser Marcus to have said that all the
scientists and doctors involved in the NIH study, including the
authors of the retracted PNAS and Science papers, “are
committed to completing this study because none of us believes
that the issue of retroviral infection in CFS/ME is resolved”.
Retrovirology
apart, there is now undeniable evidence of multi-system damage
in ME/CFS, including inflammation of the blood vessels,
hypoperfusion of the brain, delayed recovery of muscles after
exercise, dysfunction of the immune and neuroendocrine systems,
and evidence of marked abnormalities in gene expression
profiling.
Professor Nancy
Klimas is to head a new Institute for Neuroimmune Medicine
(specifically ME/CFS) at Nova Southeastern University: she will
be providing cutting edge research and education of health care
professionals, combined with care of patients; she will focus on
systems biology, connecting neuro-imaging experts with
scientists researching inflammation and genomics/proteomics, as
well as collaborating with experts in neurotoxicology.
There is also the
work of Dr Jose Montoya’s Chronic Illness Initiative at
Stanford; the husband and wife team of Drs Light at the
University of Utah; Dr Derek Enlander’s Chronic Fatigue
Initiative with a very large budget for research at Mount Sinai,
as well as the Public Health and Neuroimmunology Unit (PHANU) at
Bond University in Australia (http://forums.phoenixrising.me/content.php?519),
plus the committed work of Professors Mark VanNess and
Christopher Snell at the University of the Pacific, all of which
disprove the beliefs of the Wessely School that ME/CFS is a
behavioural disorder.
Furthermore, the
UK Medical Research Council has finally recognised the need for
biomedical research into ME/CFS and is funding £1.6 million for
research into aspects including autonomic dysfunction, aberrant
mitochrondrial and cytokine production in skeletal muscles, and
immune system dysfunction.
As clinical
psychologist Dr Dorothy Rowe pointed out in 1993:
“
People who
know absolutely that they are right are very dangerous”
(The
Observer, 14th November 1993), but who paid any
attention? Father Cormac Rigby did: “The greatest enemies of
truth are those who think they have a monopoly of truth”
(The Lord be with you; Family Publications, Oxford, 2004).
Further information
Click here for more references to the PACE Trials on this site.