Tuesday, October 28, 2008

Prejudice-Based Medicine?

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Prejudice-based Medicine?

Reasons for Judicial Review of the NICE Guideline on "CFS/ME"

Margaret Williams 27th October 2008

On 2nd November 1972 the London Medical Group held a closed meeting at which
aversion "therapy" was promoted as a "cure" for homosexuality. The "therapy"
was drug-induced nausea whilst the "patient" had to view homosexual acts
(preferably live). The aim of this so-called "re-conditioning" was to
"change the emotions where the person cannot change them of his own free
According to one of the speakers, psychologist Hans Eysenck, aversion
"therapy" was "only undertaken where it is of the patients' own choice".
Another speaker, Dr Isaac Marks, Senior Lecturer and Consultant Psychiatrist
at the Maudsley Hospital, justified such abuse as being "in society's
interest". The proponents of this "therapy" were praised by the chairman of
the meeting for their "outstanding contributions to psychology" and were
referred to as "these great men". People who underwent this "therapy" ended
up as chronically depressed asexual vegetables

(http://www.petertatchell.net/psychiatry/dentist.htm ).

On 28th April 2008, another closed medical meeting was held in London, this
time at the Royal Society of Medicine; once again the intention was to
promote another currently faddish "therapy" as a "cure" for another
so-called "aberrant" disorder. This time it was not about homosexuality but
about myalgic encephalomyelitis / chronic fatigue syndrome
(ME/CFS), which
the psychiatrists to whom the RSM offered a platform prefer to call "CFS/ME"
and claim that it is a behavioural disorder. These psychiatrists (known as
the Wessely School) lump ME/CFS together with on-going tiredness or chronic
"fatigue" such as is seen in depression and anxiety states, even though
ME/CFS has been formally classified as a neurological disorder by the World
Health Organisation since 1969 and the WHO has confirmed in writing that
what these psychiatrists are doing is not permitted under the WHO taxonomic

People with ME/CFS have been referred to by a leading UK Wessely School
psychiatrist as "the undeserving sick of our society", so this time, the
"therapy" is a mind-altering technique to disabuse patients of their belief
that they are physically sick, combined with incremental aerobic exercise
(because the psychiatrists believe that these patients are merely
de-conditioned through self-indulgent lazing about for secondary gain in the
form of state benefits).

Of course, as in 1972, the "therapy" is only to be offered to those who
choose it, but those who refuse it (because they are simply too sick to
participate or are sufficiently well-informed to be aware of the potential
dangers) are deemed not to want to get better, so their state benefits are
summarily stopped. The "Pathways to Work" programme will require Incapacity
Benefit (now known as ESA, or Employment & Support Allowance) claimants with
ME/CFS to undergo CBT/GET before their benefits are reinstated. Not
surprisingly, the suicide rate in ME/CFS has been documented at one per
month, not because patients are mentally deranged, but because without help
they have no means of surviving such a devastating disorder and can no
longer cope with the extreme suffering.

It ought to be a matter of national concern that this current fad is now
enshrined in a Guideline produced by the National Institute for Health and
Clinical Excellence (NICE) and is to be implemented throughout the nation,
even though the "therapy" in question may already have resulted in an untold
number of non-suicide deaths (including a Member of Parliament
who suffered
from ME) and may have turned countless mildly affected sufferers into
severely affected physical wrecks requiring 24 hour lifelong care
. These
very sick people are officially described on page 68 of the NICE Guideline
as "a substantial burden on society".

In supporting the psychiatric lobby's attempt to make ME/CFS disappear
within the maelstrom of undifferentiated fatigue states, NICE has
contributed to the perpetuation of unacceptable practices by officially
sanctioning - indeed promoting - this Government-funded current prejudice,
the consequences of which will be catastrophic, not only for those afflicted
by ME/CFS, but also for those committed researchers who are on the point of
a breakthrough into the aetiology of what is by any standards a
life-shattering multi-system disorder. Chronic "fatigue" has no more a
relationship to ME/CFS than a pimple has to a malignant tumour.
In 2005, Professor Nancy Klimas, Professor of Medicine at Miami and
President of the International ME/CFS Association was clear: "Our patients
are terribly ill, misunderstood, and suffer at the hands of a poorly
informed medical establishment".

The following year (2006) she repeated the message: "There is evidence that
the patients with this illness experience a level of disability that is
equal to that of patients with late-stage AIDS, patients undergoing
chemotherapy (and) patients with multiple sclerosis".

In 2007, evidence was presented at an international conference held in
Florida that the cardiac index of these patients is so severe that it falls
between the value of patients with myocardial infarction (heart attack) and
those in shock.

Although this evidence and more was brought to its attention, NICE remained
unmoved and recommended only behavioural interventions designed for mental
disorders, talking about "unhelpful beliefs"; "the relationship between
thoughts, feelings, behaviours and symptoms", "sleep hygiene" and
"over-vigilance to symptoms".

It seems that so determined was the Wessely School that NICE should
recommend this latest fad that the Guideline Development Group (GDG) was
specifically instructed to ignore over 4,000 peer-reviewed papers which
clearly demonstrate that ME/CFS affects all major bodily systems, especially
the immune system, the neurological systems (central, autonomic and
peripheral), the neuroendocrine system, the cardiovascular system, the
respiratory system, the musculo-skeletal system, the gastrointestinal
system, the reproductive system and the ocular system.

The Wessely School psychiatric lobby dismisses all this evidence as being
"not of clinical value" and insists that patients "are assumed to have
'mental' disease" because there is "no pathology". They refer to ME/CFS as
a "pseudo-disease". It seems that NICE agrees.

To be fair to NICE, it is not required to address causation in its
Guidelines; however, its remit in this case was to produce a Guideline to
aid diagnosis. To do so, it was necessary for NICE to identify and define
the disorder in question by considering the existing knowledge-base. Indeed,
NICE is required to do so under the terms of the AGREE instrument, to which
it is a signatory. In its Guideline on "CFS/ME", NICE signally failed to do

Virtually all the UK ME/CFS charities condemned the Guideline as unfit for
purpose: such was the outrage and disgust throughout the ME/CFS community at
the way that NICE had deliberately ignored so much evidence about ME/CFS
that a Public Law firm (Leigh Day & Co, rated number one in Chambers' legal
directory) agreed to seek permission to challenge the Guideline in the High
Court by way of Judicial Review.

The initial Hearing was on 17th June 2008 before Mr Justice Cranston (Sir
Ross Frederick Cranston), who in his Judgment said: "There is no doubt that
ME is a debilitating condition
and many of us will know of people who have
the condition. Mr Hyam (for the Claimants) has pointed to the lack of
balance in the composition of the group drawing up the Guidelines. Given
the great public interest, it seems to me that this case ought to go forward
for a full hearing".

NICE is therefore once again being dragged kicking and screaming into the
High Court in an attempt to justify what cannot logically be justified.

For example, NICE decided to reject the WHO formal classification of ME/CFS
as a neurological disorder
. The ME/CFS community has obtained an abundance
of evidence that this might be because the psychiatrists' gravy train would
hit the buffers if NICE acknowledged that ME/CFS is a discrete neurological
disorder. NICE's position on this is unsustainable because not only does the
WHO classify ME/CFS as a neurological disorder, but since 2003 the UK Read
Codes used by all GPs also classify it as a neurological disorder.
Furthermore, ME/CFS is included in the National Service Framework for
long-term neurological disorders, and the Department of Health (by whom NICE
is funded and to whom it is answerable) also accepts that ME/CFS is a
neurological disorder, as does the Chief Medical Officer himself. It will
be interesting for the public to see what "evidence" NICE produces to
convince the Court that its position in this regard is justified.

It will also be interesting for the public to hear NICE's explanation about
the composition of the Guideline Development Group that prepared the
Guideline, in particular, how NICE justifies its decision to exclude
clinicians with a professional lifetime's expertise in ME/CFS who were
willing to serve on the GDG, and instead head-hunted non-experts with
undeclared vested interests. For example, Dr William Hamilton was invited to
be a member of the GDG specifically because of his published work which
supports the notion that ME/CFS is a behavioural disorder that is best
treated by CBT/GET (as recommended by the Guideline). Dr Hamilton just
happens to be Chief Medical Officer of two medical insurance companies that
rigorously resist claims made by ME/CFS patients, The Exeter Friendly
Society and Liverpool Victoria (LV), which took over Permanent Health. The
antics of LV in respect of ME/CFS claims have been brought to the attention
of Members of Parliament at an All Party Parliamentary Group Meeting at the
House of Commons.

NICE may be required to clarify why it preferred the expertise of a
dietician, a reflexologist who also works as a hypnotherapist, an
occupational therapist and a physiotherapist to experienced ME/CFS
clinicians such as Dr William Weir, Dr Jonathan Kerr, Professor Julia
Newton, Dr Terry Mitchell, Dr Nigel Speight and Dr Charles Shepherd. Again,
it will be interesting to hear NICE's explanation, especially as the
physiotherapist just happened to have worked with psychiatrist Professor
Peter White and it was she who wrote the handbook on graded exercise for the
Medical Research Council's "CFS" trial, of which Peter White is a Principal
Investigator. This physiotherapist also works for the same medical insurance
company as Peter White, which pays her to recommend (and carry out) GET for
claimants (so could it be said that her vote in favour of GET was a forgone
conclusion?). Furthermore, she works as a "healing" therapist using Human
Givens "therapy" (which claims to "empower" patients but is described by one
clinician as "dodgy psychobabble"). Many people have difficulty in
understanding how this physiotherapist had more to offer the patients for
whom the Guideline is supposed to be intended than the Medical Adviser to
the ME Association.

None of the many competing interests of GDG members was declared in the
Guideline: it was not until two months after the Guideline had been
published that NICE released what purported to be the List of Competing
Interests of the GDG; it barely scratched the surface of GDG members' vested

Then there is the interesting matter of how this Institute for Clinical
Excellence produced its "evidence" out of thin air: since even NICE could
not procure non-existent evidence to support its recommendations for
behavioural therapy, it decided to create its own evidence by transferring
data from one study and inserting that data into a totally different study
to produce what might have been the desired results if the study in question
had run for five years instead of only fourteen months. The fact that the
transplanted data came from a study that had used different entry criteria
and whose own data had been corrupted (admitted by the authors themselves)
seems not to have troubled the Institute for Clinical Excellence. Most
straight-thinking people might regard such doctoring of the evidence as

Another interesting area is the "Consensus" methodology that was used in the
production of the Guideline on "CFS/ME". It does seem to be the case that
formal consensus methodology was conspicuous by its absence: indeed, on
10th May 2006 NICE made it known that the consensus technique was to be
"modified" by NICE for the development of this particular Guideline.
Scrutiny of this "modification" as it appears in the Guideline makes very
interesting reading. It will not escape attention that the person described
in the Guideline as the "Consensus Development Expert" was Professor
Rosalind Raine, whose published track record happens to be that "CFS/ME" is
a behavioural disorder that should be managed by CBT/GET. Raine specifically
singled out "CFS" for study (funded by the MRC) and she is clear: CBT should
aim to "modify thoughts and beliefs with the expectation that emotional and
behavioural changes will follow"; behavioural therapies focus on "the
modification of behaviour to positively reinforce healthy behaviours" and
they "emphasise the role that social factors can play in the development and
maintenance of functional somatic complaints. The goal is to identify and
reinforce 'well' behaviours while reducing reinforcement for somatic
behaviours" (Lancet 2004:364:429-437). The ME/CFS community may well be
justified in maintaining that NICE's "consensus" exercise was cosmetic.

There is in addition the matter of NICE informing the Court on 17th June
2008 at the initial Hearing before Mr Justice Cranston that it had no
knowledge of certain documents before that Hearing, even though receipt of
some of those documents had previously been acknowledged in writing on 23rd
January 2006.

There is also the serious issue of Social Services continuing to seek to
remove children with ME/CFS from their parents and placing them in "care",
citing the NICE Guideline as the reason.

NICE appears to be in breach of the AGREE instrument (to which it is obliged
to conform in the production of its Guidelines) on no less than seven
separate counts. It will be interesting to hear why this should be so in
the production of the Guideline on "CFS/ME" and the Court may be keen to
hear why NICE appears to have broken its own guidelines (that it is obliged
to observe) in so many respects in the production of this particular

This is undoubtedly a high profile case. At the preliminary Hearing in
June, there was standing room only.

The Hearing is listed for 11th-12th February 2009. High Court officials are
now busy rearranging the Court venue in order to ensure not only disabled
access and facilities, but also to accommodate the coach-loads of people
from the UK ME/CFS community who are expected to turn up to witness what
will undoubtedly be a landmark legal action that will have global

Literature References:



* * *
Much emphasis is placed on supposed benefits of pretending to be sick.
Let's look at the downsides of having CFS:
* constant pain
* constant physical problems if you try to do too much
* verbal abuse from people who think you're just lazy if you don't try to do too much
* verbal abuse from people who think you could go back to work if you'd just admit you're depressed and get treatment for it
* losing your middle-class lifestyle to scrape by on below-poverty-level disability benefits (if you're one of the lucky few who can get them.
* 3/4 of marriages affected by chronic illness end in divorce
* when you lose your job and/or marriage, you lose your medical insurance and your retirement/pension contributions
* many patients lose their homes, either being forced to move in with relatives or living in the streets
* isolation as friends go on with their lives, which do not include making time to visit the homebound; I've been invited to participate in events far beyond my physical capacity but when I turn it around "I can't come there, you come here", the desire to spend time with me disappears
* repeatedly being refused necessary assistance because you don't meet the criteria -- there's plenty of help out there if you have certain disabilities or diseases, but CFS isn't one of them. Every charity I've approached has told me I don't have the right problem. If the CFS led to me being in a wheelchair, I could get help, but as long as I'm fighting to stay on my own two feet because my house is not wheelchair-accessible, even the organization for the severely handicapped won't provide a volunteer.
Since my Unemployment benefits ran out in Summer 2000, I haven't gotten one cent of government benefit, and not one iota of assistance from any government agency. People who were hired to help -- being paid money that I could not really afford to pay them -- goofed off, stole from me, created bigger problems, or otherwise were more trouble than they were worth.
I don't have a houseful of servants: if I'm too sick to get out of bed and fix dinner, I go hungry.
Dorothy Wall wrote an excellent book describing her life with CFS, but the key there is "her life". Most of us don't have a doting husband to pay the bills, or a devoted daughter who cooks special meals and fixes a nice bath (which she helps us get into and gently tucks us into bed afterward). If, like me, you were stricken in your 20s and were advised that the physical stress of pregnancy might create permanent disability, you don't have children at all. Husbands complain "I didn't get married to cook and clean" and go in search of a healthy woman who can do all the housework and give them children. The problem is, the majority of us are using all our energies and resources simply to survive, and have nothing to spare for writing a book. Dorothy wouldn't have written her book, either, if she were responsible for doing everything around the house and paying all the bills.
Since my health is too unpredictable to take a job with set hours, my workload fluctuates. If my clients have work to give me, I do their work, earn the money to pay the bills, and ignore things like my blog. When they have no work for me, I blog, do extra housework, and run errands that I didn't have energy for the week before when I was working. If I were working to my full capacity every week, there would be no blog, because I'd use all my energy working, but since there are no guarantees in a freelance job, you can only work when work is offered to you, I can find time to do some blogging now and again.
Given my druthers, I'd be healthy enough to return to the full-time career I loved, which paid enough to buy anything I wanted and go on vacations. I wouldn't be spending most of my time confined to an area the size of my bed, begging doctors for the prescriptions that would get me well (which, for some reason, they don't want to give me), pinching pennies so that I can afford the prescription if I ever get it, and wondering if I have it in me to get to the kitchen to heat a bowl of soup or if I'm going to collapse on the floor before I get there.
Frankly, I don't see one shred of reason for me to "pretend to be sick". I'm not getting any attention ... I got a heckuva lot more attention back when I was healthy enough to do volunteer work, be interviewed by journalists, be praised by employers. All the benefits that they like to claim are there to encourage people to "act the sick role" aren't really there, not in my life and not in the lives of a lot of other patients.
The ones who really need the therapy to change their thought processes aren't the patients, it's the people who tell us that we're enjoying this lifestyle too much to give it up. Betcha if I offered to tie one of them to the bed and inflict pain 24/7 to make sure that they can't sleep for years, they wouldn't find it in the least enjoyable. Not even if I offered to pay them the few hundred bucks that people get from SSDI. There's not enough money in the world to make me voluntarily put up with the disruption this has caused in my life and the constant pain that goes with it.

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