Ever since the foundation of the UK Science Media Centre in 1999
– whose purpose is to ensure that the media deliver only
headline science stories that accord with Government policies –
the reporting of the biomedical science surrounding ME/CFS has
been noticeable by its absence. Instead, there has been a wealth
of spin promoting the benefits and success of CBT and GET for
every disorder imaginable, including ME/CFS.
In plain terms, the Science Media Centre presents only a
one-sided view of the
available information about ME/CFS, and
direct contact with editors and health editors of broadsheet
newspapers has revealed their policy of limiting their reporting
of ME/CFS to what they receive from the Science Media Centre.
The fanfare of unlimited praise for the PACE Trial results at
the press conference held at the Science Media Centre on 17th
February 2011 is a case in point, with the media failing to use
its critical faculties and regurgitating only what it had been
spoon-fed.
There are a staggering number of flaws in the PACE Trial article
published in The Lancet (Comparison of adaptive pacing therapy,
cognitive behaviour therapy, graded exercise therapy,
and specialist medical care for chronic fatigue syndrome (PACE):
a randomised trial. Peter D White et al. The Lancet, 18 February
2011 doi:10.1016/S0140-6736(11)60096-2), not one of which was
mentioned in the press conference.
These flaws and errors have been identified in a detailed
complaint/statistical analysis sent by Professor Malcolm Hooper
to The Lancet on 28th March 2011, upon which The
Lancet has asked Professor Peter White to comment (a response
with which Professor White has apparently not complied within
the time allotted for its receipt by The Lancet).
It is understood that under the Elsevier complaints policy,
Professor Hooper will be asked to respond to Professor White’s
reply when it is received by The Lancet; it is also understood
that the PACE Trial article was to be sent for re-review by
different reviewers and statisticians whilst The Lancet was
awaiting Professor White’s comments on Professor Hooper’s
complaint.
Professor Hooper’s analysis will shortly be placed in the public
domain; he had agreed with The Lancet to withhold his complaint
from publication during the time allotted by The Lancet to
Professor White to respond to it, but this agreed time limit has
now expired.
There is one crucial point that should not be overlooked amidst
the multitude of comments, spin, disquiet and anger surrounding
the clearly contrived and exaggerated results of the PACE Trial,
which is that if the PACE Trial Investigators had claimed to be
studying the effect of CBT/GET on people with medically
unexplained or idiosyncratic “fatigue”, few people would have
objected.
What is fuelling the opprobrium is the fact that the PACE Trial
Investigators insist that they have been studying those with
“CFS/ME”, which is how they refer to the neuroimmune disorder
ME/CFS.
The pressing question has to be how the Wessely School can be
permitted to disregard the ever-increasing biomedical
evidence-base on ME/CFS and to refuse – on no evidence whatever
-- to accept the WHO classification of ME/CFS as a neurological
disorder.
What can be done to halt the Wessely School’s anti-science
activities and misinformation about ME/CFS which they propagate
and disseminate with consummate skill? Since they will not
budge from their beliefs, could they be right and the biomedical
scientists be wrong? Not at all: the Wessely School is gravely
mistaken about the nature of ME/CFS and about their ascription
of its symptomatology to a somatoform disorder.
In 1978 (33 years ago), the BMJ published a summary of the
symposium on ME held that year at The Royal Society of Medicine:
Apart from their close involvement with the medical and
permanent health insurance industry and the unpalatable fact
that their professional lives may be shown to have been spent in
a null field of research (i.e.. trying to prove that ME/CFS is an
aberrant illness belief), it remains a mystery as to why, as
bona fide mental health researchers, the Wessely School so
persistently refuse to engage with the extensive biomedical
evidence-base that exists on ME/CFS.
As Dr David Bell said in his book “Faces of CFS – Case Histories
of Chronic Fatigue Syndrome” (Lyndonville, New York, 2000):
“I
have no problem with not understanding the exact mechanism of
the symptoms of CFS…I do have a problem with the lack of respect
given patients with poorly understood neurological disease”.
Bell points out that the chest pains, racing pulse, shortness of
breath, flushing, trembling, twitching, difficulty maintaining
balance, headache, physiological exhaustion to the point of
collapse, inability to walk, and pooling of blood on standing
experienced by ME/CFS patients all result, not from what Wessely
School psychiatrists deem to be deconditioning or “hypervigilance
to normal bodily sensations”, but from the dysautonomia that
is so prevalent in ME/CFS (in an effort to supply blood to the
brain, the patient’s blood pressure sky-rockets almost to levels
that could cause a stroke but then dives, such lability being
the easily confirmed hall-mark of classic ME/CFS that was
identified many years ago by Dr Melvin Ramsay ).
Bell explains that these symptoms are caused by elevation of
adrenaline levels that are released in an attempt to compensate
for impaired blood flow to the brain due to blood volume
deficits and to problems in the blood vessels themselves, which
result in the well-known (post-adrenaline-surge) exhaustion:
“(The blood vessels) must be constricted so tight in the
brain that little blood gets through. Perhaps it is one of the
hormones that constricts blood vessels. Perhaps an infection of
the blood vessels. Perhaps it is an excessive sensitivity of
the blood vessels to adrenaline….CFS is a devastating
physiologic process that undermines the body’s energy and the
brain’s cognitive ability….CFS is not…an illness behaviour for
lazy people. The consequences of this illness weigh heavily not
only on the victim, but also on family, community and society”.
ME/CFS is an inflammatory disease (Pasi A et al. Mol Med Report
2011:4(3):535-540). Kennedy et al from the Vascular and
Inflammatory Diseases Research Unit at the University of Dundee
have reported a whole raft of abnormalities in adults (and
subsequently in children) with ME/CFS that are consistent with
vascular instability and dysautonomia. These findings include
an increase in apoptosis of white blood cells; raised levels of
oxidative stress which can damage blood vessels and other
organs; increased markers of inflammation, and abnormalities in
blood vessel function (Co-Cure RES, MED: 17th May
2010).
Another pressing question must be why the media so frequently
fail to report such serious pathology in ME/CFS patients and to
rely so unquestioningly on the Science Media Centre to do their
work for them. Where is their own intellectual judgment and
journalistic skill?
Following the NIH State of the Knowledge Workshop in April 2011,
Professor Leonard Jason from DePaul University, Chicago, took
part in a televised discussion hosted by Llewellyn King
transmitted on 8th April 2011 (The Voice of America,
episode #3012) in which Jason said that patients with ME/CFS
“get thrown to the psychiatrists….These are patients who
are victimised by an illness and then the media further
victimises them, and then the medical community also does it”.
Another contributor, author Deborah Waroff from New York, made
the point that “UK patients (with ME/CFS) are probably
the most unfortunate in the entire world”.
Victimisation by the media is well illustrated in the article on
the PACE Trial by Adam Morris in The Edinburgh Evening News
published on 15th April 2011:
““If implemented, it
means patients would be placed on recovery schemes, with
thousands benefitting from a new regime of exercise and a
‘positive mental attitude’ ”.
This statement should be compared with the comment by Professor
Paul Cheney from the US on graded exercise (made in the UK at
the Invest in ME conference in May 2010, proceedings of which
are available on DVD from IiME -
click here):
“The whole idea that you can take a disease like this and
exercise your way to health is foolishness. It
is insane ”.
Media coverage of ME/CFS remains problematic; comments on the
PACE Trial by Vivienne Parry written for the charity AYME (The
Association of Young People with ME) published on 14th
April 2011 are illustrative.
Ms Parry sits on the Council of the Medical Research Council and
was awarded an OBE for services to the public understanding of
science. She is on the Board of the Science Media Centre, whose
Science Advisory Panel includes Professor Simon Wessely. The
Science Media Centre itself states:
““The team at the SMC is
advised by a Science Advisory Panel and a Board”
which
would seem to indicate a close working relationship between Ms
Parry and Professor Wessely.
Ms Parry is described by AYME as a “highly respected
scientific journalist” but her comments on the PACE Trial do
not assist patients with ME/CFS because many of them are
inaccurate:
it is not known “for sure” that two treatments (GET and
CBT) are “safe and moderately effective” for people with
ME/CFS because it cannot be certain how many patients with
ME/CFS as opposed to “CFS/ME” were included in the PACE Trial
(“CFS/ME” being chronic fatigue in the absence of neurological
signs)
the PACE Trial was not “as rigorous a study as it is possible
to have”; as a respected scientific journalist, Ms Parry
will know that if a trial is not a controlled trial, it cannot
be so described
it is not quite true to say that it was carried out by
“a
team of experts”, since 22 of those carrying out one arm of
the trial were trainee psychiatrists employed to work at the
Kings College PACE Centre, London
APT is not the same as pacing, and pacing was not studied in the
PACE Trial
people with ME/CFS do not have
“fatigue as their main
symptom”; they have post-extertional fatigability
accompanied by malaise as their main symptom (their voluntary
muscles do not work properly and are exquisitely painful after
exercise)
Ms Parry says: “There are two problems here. One is about science. Research is about coming up with a hypothesis and then
trying to knock it down”. This is precisely why the PACE
Trial cannot be considered “scientific”. Although the
Investigators’ hypothesis that “CFS/ME” is exactly the same as
ME/CFS and that it is a behavioural disorder reversible by CBT
and GET was indeed knocked down by the results, the
Investigators refuse to accept that the trial failed
Ms Parry then says: “Long held, cherished and utterly
plausible ideas are regularly demolished by evidence”. This
is true, but Ms Parry fails to understand that the results of
both the FINE and PACE Trials demonstrate that the Wessely
School’s psychosocial model of ME/CFS is wrong and has been
demolished by evidence
seemingly
with no awareness of the paradox in her comments, Ms Parry
continues: “This can be incredibly disappointing but you have
to move on and ask the next question, not constantly keep asking
the same one in the hope that eventually you will get a
different answer”. Refusing to relinquish long held and
cherished ideas about the nature of ME/CFS is exactly what the
Wessely School have done for the last 25 years, and indeed they
continue to do so
Ms Parry continues: “Some people also said that the trial was
meaningless because it excluded those with a neurological
disease, therefore could not have contained anyone who had ME
since this is a classified neurological disease. This is a bit
silly because why would you design a trial that excluded the
very patients you wanted to study?”.
The answer, Ms Parry, is simple:
the Wessely School refuse to accept that ME/CFS is a
neurological disorder.
As another, more informed,
commentator (JT) has remarked, Ms Parry’s article
“is an
embarrassment….The trial was not studying the neurological
disease ME/CFS but people with chronic fatigue in the absence of
neurological signs, or “CFS/ME”….If the Oxford criteria had been
applied correctly there would be no people present with
ME….People should now be aware that the results were not
clinically significant, and there remains little evidence to
support the use of CBT and GET in the management of ME/CFS”
Is it not important that highly
respected scientific journalists get their facts right and
refrain from contributing to the prevailing media bias about
which Professor Jason was so outspoken?
People genuinely cannot understand how
individuals who profess to be speaking up for the primacy of
science can defend, let alone promote, such a transparently
flawed study as the PACE Trial.
The failure of CBT/GET is written in the
numbers: even the skewed data presented and published in The
Lancet show that CBT/GET are of no clinical value in the cohort
studied, and certainly do not confirm that the interventions are
safe and effective enough to be generalised to everyone with
ME/CFS or even “CFS/ME”.
Invest in ME
Pre-Conference Evening Presentation 19th May 2010
Further information
Click here for more references to the PACE Trials on this site.