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The recently published PACE Trial was
claimed to be a large-scale trial
"..the first in the world to test and compare the effectiveness
of four of the main treatments currently available for people
suffering from chronic fatigue syndrome (CFS), also known as
myalgic encephalomyelitis (ME)."[1]
So the trial was intended and
designed to study
myalgic encephalomyelitis (ME).
Some have claimed it was a large clinical trial of treatments
which suggested that cognitive behavioural therapy (CBT) and
graded exercise therapy (GET) were more effective supplements to
specialist medical care than adaptive pacing therapy
(APT).[2]
CBT and GET are hyped up as non-drug therapies based on the view
that this disease (recognised by the WHO and by the UK
government as a neurological disease) can be treated by
appropriately supported changes in behaviour.
Such a proposition has for decades been discounted by people who
actually have this disease and by the families of patients who
have to live with the effects of the disease being played out
every day. This rejection of CBT and GET has even been
discounted by those who have actually tried some of these
“treatments”. This proposition has also been completely
discredited by other research and rejected by healthcare systems
in other countries such as Norway.[3].
The Belgian government
".... evaluated the outcome of the treatments at the CFS Centers.
They concluded that a "rehabilitation therapy" with CBT/GET
yielded no significant efficacy in the treatment of ME/CFS and
that CBT/GET cannot be considered to be curative therapies."
[4]
The PACE Trial publicity spin heralded PACE as the largest ever
clinical
trial
done of treatments for ME. It was alleged that it included 640
patients and took eight years to complete.
Some of the major ME patient organizations dismissed the
findings of the PACE trial – though to believe that they
dismissed the findings immediately upon publication would be
erroneous as they had been saying the same thing for many years
and warning of the biased results which they believed would
eventually be published.
The authors of the PACE Trial were
criticised
by patients and patient organisations – something which is not
uncommon when controversial and, many would say, flawed research
is published. However, the criticism contained much valid
commentary – on the internet, and elsewhere. One has to pose the
question who knows this disease better - patients and patient
groups or a relatively small group of psychiatrists employed by
insurance companies or government departments?
For years similar criticisms of psychiatrists having manipulated
this disease have been made yet it seems that the media and the
medical journals rarely publish any of these criticisms. Instead
patients and patient groups have to experience a torrent of
misinformation about the disease.
For a bystander, who has no knowledge of the way that ME has
been portrayed as a somatoform illness by known vested interests
supported by the insurance industry and others, this may seem a
curious response to the publication of a study which suggests a
positive treatment. But when money is at stake nothing is ever
simple.
The establishment media, supported by the Science Media Centre
which has for years presented only the somatoform view of ME
(look at who is on the SMC board [5]),
quickly and continually provided a gush of responses stating the
study produced evidence that these particular treatments were
helpful for the condition.
Of course, the media and other figures from medical journals and
the psychiatric lobby suggested that patients were angry because
they didn't want that treatment to be helpful.
It really is a funny old world – when patients who have nothing
to gain from being ill, whose condition is described as worse
than cancer or HIV/AIDS and who are regularly ridiculed by
psychiatrists, media and healthcare staff, when these same
patients do not want to be made well.
What a funny old world – what ungrateful patients!
Why can’t these patients just believe these informed
establishment voices who are saying that ME is all down to behaviour?
Why can't they just believe these self-appointed psychiatrists
who enjoy being called "ME Experts".
Is the patient community response valid?
Perhaps the various ways of labelling this disease are
responsible for this reaction?
Research literature has commonly used the term CFS but patient
organizations generally prefer the term Myalgic
Encephalomyelitis (ME) because it more accurately describes the
disease. This is what the WHO use in ICD-10 G93.3
classification [6].
This is due to the overwhelming biomedical research which has
shown ME to be an organic illness yet which receives no funding
from the Medical Research Council and has been systematically
ignored by the CDC. In the UK it is known that previous
high-quality biomedical research proposals have been rejected
because of a veto by known proponents of the somatoform lobby.
One only has to look at the track record of the MRC regarding
funding of research into ME to realise that something has been
very wrong with the way research funding for ME has been
granted. As ME Research UK state in reference to the latest MRC
"Expert Panel" for ME - on which MERUK sit - "If
this is a genuine attempt to kick-start biomedical investigation
rather than a public relations exercise, the mystery panel’s
first act could be to discover whether or not the
MRC has a
case to answer over the non-funding of biomedical research since
2003." [7]
As a consequence CFS and ME are now often used almost
interchangeably or combined as CFS/ME – this is mainly
maintained by the psychiatrists of the somatoform lobby. These
terms indicate different views of the disease despite the fact
that ME is clearly identified in the WHO classification ICD-10
G93.3 as a neurological disease. However, this isn’t good enough
for those of the somatoform lobby who would really rather prefer
the disease to be under the mental health conditions.
The bystander would wonder why.
One wonders why the somatoform lobby do not prescribe CBT and
GET to cure cancer, or Parkinson’s Disease, or MS.
Most patient organisations who really represent patients with ME
know that suggesting CBT and GET to treat ME is ridiculous or
dangerous.
Patients are too knowledgeable nowadays to allow blatant
non-truths to be allowed to stand.
The reason that patients criticise the PACE study is that the
patient cohort was already made up of a heterogeneous group,
that the goal posts were changed in the study midway through it.
The PACE trial result was predictable from the start and it
seems that everything was done to make it fit a pre-determined
result rather than what materialised.
Does any ME patient not believe that the results of the PACE
trial were not only misreported to make them look credible but
also included mainly patients who did not have ME.
The use of the Oxford diagnostic criteria for CFS to select
patients into the trial was criticized as excluding people with
neurological disease such as ME. Quite rightly.
None of the recruitment for the PACE Trial would really stand up to
close scrutiny. The trial did not represent a homogenous group
of people with ME but instead a rag-bag group of anyone with
fatigue. The Oxford criteria were made by psychiatrists for
psychiatrists and really have no role to play in diagnosing or
selecting ME patients.
Regarding the question of whether ME is a ‘neurological’ or a
‘mental’ condition, given the classificatory confusion which
has been propagated by known advocates from the somatoform
lobby, a practical approach might be to abide by the World
Health Organisation classification – which the UK government has
repeatedly accepted and does accept - i.e. that ME is a
neurological disease.
As the somatoform lobby aided by big money, a compromised
Medical Research Council and an ignorant and compliant
(manipulated) media has been smothering all the media outlets
with misinformation for years then why would anyone expect
healthcare staff to take any view other than believing that ME
is not a neurological condition, in the usual sense of
‘neurological?
As most patients will know there is a lack of any speciality in
the medical field with regard to ME – with people wanting to
study ME being put off, with researchers interested in
specialising in ME losing their careers or being threatened. Most
patients will no longer expect the local hospital neurologists to
treat ME as a neurological disease as there is no interest in
the condition and no knowledge of it. So we have the absurd
situation where neurologists in a hospital do not treat a
neurological disease.
To patients it would, of course, matter if ME were portrayed as
not being a neurological condition.
Because if an examining clinician has no knowledge of the
disease, is not acquainted with the biomedical research about
the disease and is not seeing the symptoms in the correct way
then misdiagnosis will be common – exactly what happens now
thanks to the ignorance which has been allowed to fester as a
result of the blatant bias from those seeing ME as a somatoform
illness.
Most ME patients will not perceive a mental illness as a
non-illness. Most ME patients just want to get better. They know
how their illness started and any healthcare professional
willing to listen to the patient would know that bona fide ME
patients have an organic disease which has nothing to do with
the mental state of that patient. It would be a real waste of
public funding to refer these patients to mental health services
which are already stretched to their limits treating the
patients they are set up to treat.
The biomedical research
performed by experts with decades of experience bears this out.
Meanwhile the psychiatrists who belong to the somatoform lobby
can continue to dismiss the calls from patients and continue to
imply and state that ME is a behavioural illness, feeding the
ignorance which maintains that it is not a real illness.
Far from meriting any sympathy for the extreme pain caused by
the disease patients are instead victimised and discriminated
against due to the misinformation being peddled by people who
have no conscience.
Alleged incidents of harassment by ME patients are concocted and
publicised as demonstrating that these career-somatoformists are
dealing with people with a mental illness.
If one is a patient - suffering from long term disabling pain,
misinformation, discrimination and forced isolation – what can
one do?
If one
chooses
to pursue a neurological referral they are setting off down a
path where the neurologist they are referred to (if they are
lucky) not accepting that they have a ‘neurological’ condition
and offering little in the way of evidence-based treatment –
thanks to the bias and mendacity of the somatoform lobby who
control the media and the funding of research.
If, despite the NICE Guidelines for ME stating that patients
must be able to decide, the patient is coerced into accepting a
psychiatric referral they may get CBT or GET - which patients
know to be a false path, but they also risk bringing upon
themselves disbelief and the stigma of mental illness – none of
which is deserved or which has any scientific backing.
Meanwhile these psychiatrists who continue to advocate that ME
is a behavioural illness get richer, their gravy train of
research funding continues to arrive on time supplied by a
biased funding system, their egos are pumped up by media
propaganda and superficial TV doctor programmes which are
poorly researched and for which the subject matter is not
understood.
Sound-bite healthcare is the
order of the day.
These influential psychiatrists, often sitting on the boards of
organisations controlling what is written or what is funded,
encourage and foster a disbelief amongst healthcare staff that
ME exists at all. GPs diagnose ME but many of them are brainwashed into
thinking that what is published in the Lancet or BMJ has to be
correct and that CBT and GET are effective for treating ME.
The patient suffers – the career-somatoformist continues to
thrive with endless positive publicity generated from a
controlled and biased media.
Patients often experience complete ignorance from healthcare
providers of the biomedical research which has taken place and
which overwhelmingly destroys the arguments of the somatoform
lobby. The healthcare professionals still often show a lack of any awareness of
the possible
treatments which biomedical research and some trials have established can truly
help treat
ME.
ME patients are, of course, the real casualty of the conceptual
splitting of physical and mental illness, something which the
somatoform lobby does not want to occur.
It is in the
somatoform-lobby's interests to blend and merge less well-known
diseases into this somatoform umbrella which encapsulates
everything for which there is little funding of biomedical
research and where a gullible and ignorant media can be
manipulated to publicise misinformation.
Patients with ME do not have their real symptoms treated and the
people who are genuinely mentally ill are placed by the side of
ME patients suffering from a recognised organic disease.
Patients who have diseases like ME, which has been so corruptly
portrayed by some organisations and individuals, are clearly
disowned by proper medical services.
One issue may be whether the question of an illness being
neurological or mental makes any sense.
Of course it does.
Research which is funded merely to prove that underfunded,
under-researched biological conditions can be watered down and
squashed into a one-size-fits-all paradigm which serves nobody –
other than those who are employed by insurance companies,
pharmaceutical companies or a government agency to dismiss a
disease like ME or who receive funding from other quarters which
are intent on maintaining the somatoform lobby’s influence over
this disease.
As George Bernard Shaw once said –
Beware of false knowledge; it is more dangerous than ignorance.
The logical case for funding proper biomedical research into ME
and separating the unscientific stranglehold that the somatoform
lobby currently have over conditions such as ME will be opposed
by the same vested interests who pretend to be victims of hate
campaigns. Those who have most to lose by treating ME as a
mainstream, neurological disease are well identified.
Look for the money. We all know who will lose out if ME is
treated properly and scientifically and if proper funding for
biomedical research were provided.
Yet progress is being made - thanks to biomedical research.
Some will try to stop this progress. Political inertia, medical
ignorance, and fear of losing status by these vested interests
who clearly have so much to be concerned about when their
gravy-train is derailed will be motives for hindering progress.
These are frightened men (and women) who see their cash cow of
unchallenged research funding being gradually dismembered by
high quality biomedical research and becoming increasingly
concerned that their rich carousel of rewards is about to come
to an ignominious end.
We will know when that day comes.
- when patients who currently receive a diagnosis of ME
no longer have to face a dilemma of whether their illness is
neurological or mental because biomedical research will have
been given a chance to prove what all patients know already –
that ME is an organic disease requiring proper science to
explain it and provide treatments for it;
- when the media and other scientists can reject
corrupted and biased policy-based evidence regarding
psychological and behavioural treatments for ME;
- when trials of behavioural treatments for these
conditions can finally be discarded to the waste bin along with
their proponents – something that is long overdue.
- when the hypocrisy of career psychiatrists can be
discarded by rational healthcare professionals
-
and when these same psychiatrists and organisations who have
hijacked this disease for the past few decades can be held
accountable by law for the misery which they have caused to so
many ME patients for so long.
It really is a funny old world.
Footnote:
Professor Hooper was later informed by
email shortly before the IIMEC6 conference in May 2011 that
the PACE Trial was not meant to address ME
“The PACE trial paper refers to chronic fatigue syndrome
(CFS) which is operationally defined; it does not purport to be studying
CFS/ME” [8].
The PACE
Trial is therefore again shown to be flawed in its description, and
therefore its outcome.
References
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