A NICE DILEMMA?

A NICE DILEMMA?

Margaret Williams 15th December 2008

ME/CFS in the US

In the Summer 2008 issue of The CFIDS Chronicle published by The CFIDS
Association of America, Anthony Komaroff, Professor of Medicine at Harvard,
editor-in-chief of Harvard Health Publications and senior physician at
Brigham and Womens’ Hospital, Boston (who has published more than 230
research papers on ME/CFS) wrote an article listing the top ten biomedical
research findings in ME/CFS.

These are summarised at
http://www.prohealt h.com/library/ showarticle. cfm?libid= 14063 and include
evidence that (1) many patients with ME/CFS have no diagnosable psychiatric
disorder and that ME/CFS is not a form of depression; (2) there is a state
of chronic, low-grade immune activation, with evidence of activated T cells
and evidence of genes reflecting immune activation, as well as evidence of
increased levels of cytokines; (3) there is substantial evidence of
poorly-functioning NK cells (white blood cells that are important in
fighting viral infections); (4) there is evidence of white and grey matter
abnormalities in the brain; (5) there is evidence of abnormalities in brain
metabolism (and evidence of dysfunction of energy metabolism in the
mitochondria) ; (6) there is evidence of abnormalities in the neuroendocrine
system, particularly in the HPA axis but also in the hypothalamic- prolactin
axis and in the hypothalamic- growth hormone axis; (7) there is evidence of
cognitive difficulties, especially with information processing, memory
and/or attention; (8) there is evidence of abnormalities in the autonomic
nervous system (including a failure to maintain blood pressure, abnormal
responses of the heart rate, and unusual pooling of blood in the legs, as
well as low levels of blood volume); (9) there is evidence of disordered
gene expression, especially in those genes that are important in energy
metabolism and in genes connected to HPA axis activity, to the sympathetic
nervous system and to the immune system; (10) there is evidence of frequent
infection with viruses, especially herpesvirus and enteroviruses.

Former top ME/CFS researcher at the US Centres for Disease Control (CDC), Dr
Suzanne Vernon, stated on 5th December 2008 that there are now more than
5,000 peer-reviewed articles in the biomedical literature that tell us a lot
about the disrupted biology of ME/CFS, about what happens to the immune and
endocrine systems and to the autonomic and central nervous systems
(http://www.prohealt h.com/library/ showArticle. cfm?libid= 14167 ). When asked
why this information had not been harnessed, her reply was that there is no
good reason why it has not been translated to the medical community, saying:
“no-one is filling that gap between the bench research and the bedside”. She
noted that ME/CFS is “ultimately described as immune dysregulation and
neuroendocrine disturbance”. Dr Vernon stated that “infection is the key to
initiating/triggeri ng ME/CFS and the immune system is central to sustaining
(it). Hormones are critical in modulating the immune response. A unifying
theme is disturbed cell signalling and cell metabolism. We know that low
cortisol occurs in some patients with ME/CFS. Cortisol is a critical
molecule for regulating the HPA axis and is essential for modulating the
immune response”.

The results of a new study by Courjaret et al are unambiguous and
straightforward: “no direct relationship between the chronic fatigue
syndrome and personality disorders was shown” (J Psychosom Res
2009:66:13-20) .

ME/CFS in the UK

The Courjaret study will doubtless cut no ice with those who are committed
ME/CFS deniers: on 12th March 2008, one such denier (Frank Furedi), in an
item entitled “The seven deadly personality disorders” stated: “Sloth has
been medicalised, too. The creation of such conditions as chronic fatigue
syndrome invites people to make sense of their lassitude through a medical
label”

(http://www.spiked- online.com/ index.php? /site/article/ 4862/ ) .

As customary, when any biomedical aspects of ME/CFS are highlighted
internationally, they fall on deaf ears in the UK, a case in point being the
current issue of PULSE, which publishes the views of psychiatrist Dr
Christopher Bass under the heading: “Need to know – somatoform disorders”.
In his article, Bass specifically includes “CFS” as a somatoform disorder.
PULSE is a medical trade magazine widely distributed throughout the NHS and
Dr Bass is a liaison psychiatrist who, with Simon Wessely, worked at Kings
College Hospital before moving to Oxford (another hotbed of ME denial, where
psychiatrist Michael Sharpe worked before he moved to Edinburgh).

Bass makes unsubstantiated claims and he repeats, vacuously, the Wessely
School mantra, for example: “A cognitive behavioural therapy approach is
helpful in patients with somatoform disorders because it addresses the
predisposing, precipitating and perpetuating factors. CBT has been shown in
many (sic) trials to be helpful in patients with medically unexplained
symptoms such as chronic fatigue syndrome. Most patients with medically
unexplained symptoms lasting for more than six months will have a somatoform
disorder. Psychiatrists tend to use terms such as somatoform disorders
while GPs and non-psychiatrist physicians use terms like chronic fatigue
syndrome. The official diagnostic criteria for somatoform disorders—which
include hypochondriasis, recently renamed as health anxiety to reduce stigma
-- include symptoms that are caused or maintained by psychosocial factors”.

In his PULSE article, Bass states that CBT has been shown to be helpful in
“many” trials in patients with “CFS”, but even NICE itself in its now
infamous Guideline on “CFS/ME” (CG53) could find only five such trials and
it is not difficult to demonstrate that those five trials were
methodologically flawed, a fact acknowledged by the team at the Centre for
Reviews and Dissemination (CRD) at York who actually carried out the
systematic review of the literature specifically to support the work of NICE
on “CFS/ME”.

CBT/GET does not prevent death from ME/CFS

There have been a number of high profile deaths from ME/CFS in the UK. There
can be few in the international ME community who have forgotten the
harrowing death three years ago of 32 year old Sophia Mirza, who was
forcibly but illegally detained under the Mental Health Act and who
subsequently died from ME/CFS and whose autopsy revealed severe inflammation
of the dorsal roots in her spinal cord. These are the sensory nerve roots,
so she must have been in considerable pain for many years.

The most recent death is that of Lynn Gilderdale who died on 4th December
2008 aged 31, having suffered extremely severe ME from the age of 14. Lynn
had been on a very potent combination of opioid and neuropathic pain
medication via a subcutaneous pump and, sadly, her mother was arrested on
suspicion of murder, so although Lynn had made a Will stating her wishes
that her organs and tissues should be used after her death, her mother was
in police custody and was unable to ensure that Lynn’s wishes were carried
out at the time. The only organ that was retrieved immediately after Lynn’s
death was the brain, and this was sent to Kings College Hospital, London
(where Simon Wessely works). This exceptionally tragic case gained much
media coverage, not only in the UK but also in countries including South
America, the Czech Republic; Spain, Belgium, CNN Europe and Croatia.

Other recent deaths include that of Sue Firth from Yorkshire, who left two
teenage sons, and Nicola McNougher from Bromsgrove, who also left two young
sons. Like Lynn Gilderdale and Mrs Firth, Mrs McNougher suffered from severe
ME; she was unable to tolerate the degree of pain and illness, so she went
to Switzerland and chose to end her life there. Notably, Mrs McNougher was a
psychotherapist; as such, she would, one imagines, have had the insight to
practice cognitive behavioural techniques to her own advantage – if, that
is, such techniques actually work. The evidence is that they do not work.

If CBT is so successful, where, then, was the involvement of the Wessely
School psychiatrists, especially Professors Simon Wessely and Peter White,
and even Professor Bass himself, in these tragic cases? Peter White is on
record as affirming that CBT/GET can cure “CFS/ME” (“Is full recovery
possible after CBT for CFS?”; Hans Knoop, Peter White et al; Psychotherapy &
Psychosomatics 2007:76:171- 176). Professor Michael Sharpe is also on record
as asserting: “There is evidence that psychiatric treatment can reduce
disability in CFS. In some cases, it can be curative” (“Psychiatric
Management of Post Viral Fatigue Syndrome”; Michael Sharpe; British Medical
Bulletin 1991:47:4:989- 1005) and Simon Wessely himself is also on record as
confirming that significantly more patients met the criteria for full
recovery and that: “seven (23%) of the CBT patients were deemed completely
recovered” (“Long-term outcome of cognitive behavioural therapy versus
relaxation therapy for chronic fatigue syndrome: a five-year follow up
study”; Deale A, Chalder T, Wessely S et al; Am J Psychiat
2001:158:2038- 2042). For the record, that same year (2001) Wessely is also
on record as stating that CBT is not “remotely curative” (Editorial; JAMA
19th September 2001:286:11) . Wessely does not clarify how the same
intervention can result in complete recovery even though it is not remotely
curative.

None of these trials, of course, included anyone who was severely affected
by ME/CFS; indeed, it is entirely possible that there was not a single
patient with ME/CFS in any of those studies, since most of the trials used
the Oxford criteria and those criteria expressly exclude people with
neurological disorders but do specifically include those with psychiatric
disorders (which often have “fatigue” as a problematic symptom).

NICE “Guidelines” are to become legally enforceable in 2009

In an attempt to justify its reliance on those few (and methodologically
flawed) RCTs in its Guideline on “CFS/ME”, it is anticipated that on 11th
and 12th February 2009 NICE will have to explain its reasons for doing so
before a High Court Judge, more particularly so given the recent
announcement that “GPs will have to prove they follow NICE Guidelines or
face the possibility of suspension, prosecution or the closure of their
practice. Baroness Young, chair of the Care Quality Commission, revealed
that guidance from NICE would become legally enforceable from 2009, with
doctors to face tough annual checks on their compliance. Baroness Young
told last week’s NICE annual conference that policing clinical guidance was
set to be a key part of the CQC’s work, and admitted the commission had been
handed ‘draconian’ powers by Ministers” (PULSE: “Threat of legal action if
GPs fail to follow NICE”; Nigel Praities; 11th December 2008).

Before it can start wielding these draconian powers in relation to ME/CFS
patients, NICE may be required to explain to the satisfaction of the Judge
why it relied upon an evidence-base of just one systematic review that
comprised only 18 clinical trials, not all of which were random controlled
trials (RCTs), of which just five were RCTs of CBT and a further five were
RCTs of graded exercise therapy, making a grand total of just 10 RCTs, all
on a patient base of just 1,448 patients who may or may not have had ME/CFS.

This should be compared with NICE’s Clinical Guideline on multiple sclerosis
(CG8), which had an evidence-base that contained 80 systematic reviews of
approximately 1,107 RCTs on a patient base of 89,230 MS patients. It will
be recalled that the Government states there are 240,000 with “CFS/ME” in
the UK, which far exceeds the number of people with MS.

Clearly there was insufficient evidence upon which to predicate a national
Guideline for “CFS/ME”, so – according to the rules – NICE should have
chosen the OIR option (Only in Research), which would have been the correct
procedure for the Guideline Development Group (GDG) to have followed. It
chose not to do so, thereby fuelling the perception that the GDG was intent
on recommending CBT/GET whatever the evidence or lack of it.

Some failures by NICE to adhere to its own Guideline Development Manual

It is anticipated that NICE will also be required to explain to the Judge
why it failed to adhere to its own Guideline Development Manual in the
production of its Clinical Guideline 53 on “CFS/ME” in numerous other
important areas.

For example, there was the unfortunate “misprint” in the printed version of
the Questionnaire that respondent stakeholders were required to complete
prior to the publication of the draft Guideline, a “misprint” that
potentially skewed the answers to over one third of the questions in that
the instructions were misleadingly worded and seemed deliberately ambiguous,
even to a clear-thinking person, let alone an ME/CFS patients with cognitive
difficulties. Perhaps expediently, the instructions for the following
section (starting with question 62 and relating to “Behavioural Approaches”)
changed – without guidance or notification – from choosing to tick
“inappropriate” in the previous section to choosing to tick “appropriate” in
that section. Without having attention drawn to this important change, few
people with cognitive problems such as are found in ME/CFS would have
spotted this hurdle. When notified of this, respondents were given just two
days by Nancy Turnbull to correct their responses (see email sent on 3rd May
2006 at 2.26pm from Nancy Turnbull to Participants) , which was an
impossibility, since many completed Questionnaires were likely to have been
posted back by then. NICE did not seem concerned, but perhaps this was
because the outcome was a forgone conclusion, so whatever information
patients submitted was of little value to the GDG, who are on record as
affirming that patients’ evidence was deemed to be “biased” (J Inf 2007:
55:6:569-571) and therefore of little value, which is in direct
contradiction to the Expert Patient programme rolled out in 2001 by NICE’s
own paymaster, the Department of Health, in which patients with long-term
diseases are to be acknowledged as experts in their own conditions).

Then there was the curious matter of NICE quietly dropping the required
second consultation on the draft Guideline; although NICE instituted a
nominal “consultation” period (which for some reason was over the 2005/6
Christmas/New Year break) on their wish to drop the second consultation,
many stakeholders were unaware of it, even though they were required to be
notified of it by NICE. The Manual is unambiguous that Guidelines in
preparation that were beyond a certain stage of development (as was the case
with CG53) were to continue under the old rules (which stipulated not one
but two consultations) . This did not happen with CG53.

Introduction of “Consensus” for CG53

A notable innovation in the production of CG53 was the use of “consensus”
by the GDG (said to be because the evidence-base was so poor). By letter
dated 26th January 2006, a NICE Communications Executive (Sarita Tamber)
confirmed: “With regard to the CFS/ME guideline, because of the lack of
evidence it was decided to use formal consensus methods with the GDG. As you
are aware, NICE guidelines are based on research evidence but NICE is aware
of the lack of evidence on CFS/ME”. Consensus methodology is rigorously
defined, but in the case of CG53, NICE decided to use its own “modification”
that was specially formulated for this particular Guideline (as confirmed by
Dr Mercia Page of NICE in her evidence to the Gibson Inquiry). The person
who advised the GDG about the consensus methodology to be used was Professor
Rosalind Raine, Professor of Health Services Research at University College,
London. Professor Raine’s published views on “CFS/ME” just happen to be
that it is a behavioural disorder that should be managed by CBT/GET. Her
views are to be found, for example, in the BMJ 2002:325:1082 (“Systematic
review of mental health interventions for patients with common somatic
symptoms”) and the BMJ 2004:328:1354- 1357 (“General practitioners’
perception of CFS and beliefs about its management”).

After reviewing many of the same studies assessed by the York Review team
for “CFS”, Raine’s main conclusion in her 2002 paper is that patients in
secondary care with chronic fatigue syndrome may benefit from CBT.

In her 2004 paper, CBT was described as “effective clinical management” for
chronic fatigue syndrome and she warned that GPs’ perceptions “may be a
barrier to mental health approaches”.

The Medical Adviser to the ME Association, Dr Charles Shepherd, was one of
the hundred or so respondents in the e-BMJ Rapid Responses: “As a doctor who
likes to receive balanced information in the BMJ, I was concerned at what
appears to be a clear bias by the authors in favour of the psychosomatic
explanation for ME/CFS”
(http://www.bmj. com/cgi/eletters /328/7452/ 1354#61348 ).

Also in 2004, Raine published “An experimental study of determinants of
group judgments in clinical guideline development”, Lancet 2004:364:429- 437.
It was funded by the MRC, so perhaps unsurprisingly, “cognitive behavioural
therapy, behavioural therapy, psychodynamic interpersonal therapy, and
antidepressants for irritable bowel syndrome and chronic fatigue syndrome
were selected for study”.

Raine explains in this article that CBT “is provided by CBT therapists who
aim to modify thoughts and beliefs with the expectation that emotional and
behavioural changes will follow” and that behavioural therapies focus on
“the modification of behaviour to positively reinforce healthy behaviours”
which “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 eg. excessive diagnostic testing or restricting mobility”.

Although not technically a member of the GDG, Professor Raine was in charge
of the voting system used by the GDG and must have wielded considerable
influence on the outcome. That the “consensus” method used was in reality
little more than a voting system has been confirmed by GDG member Dr Fred
Nye (J Inf 2007: 55:6:569-571) .

Another curious failure on the part of NICE was the outright refusal of the
GDG to accept the WHO international classification of ME/CFS as a
neurological disorder as listed in the ICD-10 at G93.3. This makes it all
the more notable that in November 2007 the Customer Service Centre at the
Department of Health sent out correspondence which stated: “The Government
has long recognised the World Health Organisation (WHO) classification of
CFS/ME as a neurological disease, and this is the definition used in the
final clinical practice guidelines published by NICE on 22nd August”. That
was an outright lie. It is a lie that is being perpetuated, because on 25th
November 2008, the Northern Ireland Minister for Health, Social Services and
Public Safety, Michael McGimpsey MLA, confidently stated: “There have been a
number of studies and reports in recent years clarifying that (ME) is a very
real and debilitating neurological condition. Most recently this has been
established in a NICE clinical guideline on the diagnosis and management of
ME and CFS issued in August 2007” (ref: COR/1471/2008) . The NICE Guideline
specifically and perversely refused to accept “CFS/ME” as a neurological
condition, so it is unacceptable that NICE’s own paymasters (the DoH) should
be advising constituents otherwise.

Failure of NICE to adhere to the Guideline Development Manual in the
selection of GDG members

Perhaps the most rampant failure of procedure (and evidence of bias) is to
be found in NICE’s disregard of the Manual’s directions about the required
composition of the GDG. Bias may have been inevitable from the outset,
because two people who were involved in the selection of the GDG members
were Professor Anthony Pinching and Patricia Noons, who “advised” the GDG
chairman Professor Richard Baker (who was himself chosen by Nancy Turnbull,
Chief Executive of the National Collaborating Centre for Primary Care).
Pinching was chairman of the CFS/ME Service Implementation Steering Group
and Pat Noons was Programme Director of the CFS/ME Service Investment; both
therefore had a clear interest in ensuring that CBT/GET was to be
recommended by the NICE GDG. Pinching’s views are well-known: “The clinical
features are fatigue not related to on-going exertion. Over-investigation
can be harmful and counterproductive to the management of these patients,
causing them to seek abnormal test results to validate their illness. The
benefits of graded exercise have been shown by randomised controlled trials
(citing four Wessely School studies). A behavioural response is crucial.
The essence of treatment is activity management and graded rehabilitation” .
(Anthony J Pinching. Prescribers’ Journal 2000:40:2: 99-106). Patricia
Noons has a reputation of being unhelpful to ME/CFS patients, for example,
internet notice boards contain the following: “Patricia Noons came to one of
our steering group meetings and she was less than helpful. All she was
interested in was -- just get these clinics set up as soon as possible…it
doesn’t matter what the patients think”; “Even if the Clinical Champion (CC)
wanted to be different, it was almost impossible for them to be so, as the
Department of Health and the CNCC (Clinical Network Co-ordinating Centres)
set the agenda. I have seen with my own eyes the pressure that was placed
to conform to the ‘rules’ by the ex-coordinator from the Department of
Health (Pat Noons)”. Even more tellingly, in 2004 Patricia Noons was
involved with Trent Report, which was unambiguous: “CFS/ME was not a disease
as such”. She was also involved with the 2006 NHSPlus Guideline
“Occupational Aspects of the Management of CFS: A National Guideline” which
has been rejected by 25 ME charities as unfit for purpose. That Guideline
was developed in consultation with stakeholders, DWP, NICE and Pat Noons at
the Department of Health, as documented in the official Minutes of the All
Party Parliamentary Group on ME held on 17th May 2007 at the House of
Commons.

Possibly because of the intention that CBT/GET was to be the primary
management regime to be recommended by the NICE Guideline, not a single
disease-specific expert who does not subscribe to the Wessely School
behavioural model of “CFS/ME” was permitted to be a GDG member (their
written applications were rejected by NICE in writing).

This was in direct contradiction to NICE’s own Guideline Development Manual,
which stipulates the need for a balanced membership of a GDG.

NICE disingenuously claims that the GDG was representative of the wide body
of professionals who deal with “CFS/ME” on a day-to-day basis, but that
statement is to be challenged in the High Court.

Consideration of the known views of members of the Guideline Development
Group (GDG)

The GDG chairman, Professor Richard Baker, a general practitioner for two
days a week, had no prior knowledge or experience of “CFS/ME” whatever.
Although he failed to declare it, he is described as “a pioneering thinker
in Primary Care Mental Health”. In his evidence to the Gibson Inquiry on
10th May 2006, Baker pointed to the MRC PACE trial as a good example of work
being undertaken in the UK, to which Dr Ian Gibson MP responded by pointing
to the criticism that has been voiced about the MRC trial and its underlying
research, which some have accused of being biased towards a psychiatric
model of “CFS/ME”. Baker’s response was telling: he reaffirmed that, after
talking to the MRC trial researchers (ie. the Wessely School), he did not
believe this to be the case.

Jessica Bavinton (physiotherapist) previously worked with psychiatrist
Professor Peter White at St Bartholomew’s Fatigue Clinic; she is involved in
the MRC PACE trial (reporting to the trial’s Principal Investigator,
Professor White) and is a treatment leader, having written the GET manual
for that trial; with Peter White, she is involved in the medical insurance
industry (for example, with Scottish Provident and Swiss Re, of which Peter
White is Chief Medical Officer) to carry out “assessments” on “CFS/ME”
claimants, for whom she carries out “lots” of such assessments. Letters
dated 7th August 2007 from Scottish Provident (i.e. before publication of
the Guideline) are unequivocal: one is addressed to Jessica Bavinton at
Conan Doyle Consulting Rooms, 2 Upper Wimple Street, London W1G 6LD and
says: “Dear Jessica, I would appreciate it if you would visit Mrs W at home.
We are looking for your assessment of (her) inability to perform any
occupation together with any other observations / thoughts that you may
have”. Another letter to the client says: “We are arranging for a claims
visit. This will be done by Jessica Bavinton who specialises in performing
home visits of this nature”. On 13th August 2007 the client spoke to Miss
Bavinton on the telephone and made a transcript of what Miss Bavinton said:
“She told me she specialises in ME; she does ‘lots’ of these assessments for
insurance companies; she refused to tell me what ‘treatments’ she advocates
for ME patients; the insurance company may well fund (Miss Bavinton’s)
treatments”.

Miss Bavinton is not only a physiotherapist, she has been working for a
Diploma in Human Givens therapy with the Human Givens Institute, aiming to
work privately in this field. Human Givens therapy has been described by a
medical practitioner as “dodgy psychobabble” . It purports to deal with
“mental distress” in people who are depressed, anxious, phobic, or who have
problems with addiction. In 2004, Miss Bavinton published an article called
“The mended fin” (Human Givens Publishing, 2004: volume 11, no.1) which
claims to show how the human givens approach empowers patients by promoting
emotional health and clear thinking. In a TimeBank article published in
2002 (for which the web page is no longer available), Miss Bavinton said: “I
get a greater understanding of people and their responses to life, deepening
my understanding of myself, but one of the most special feelings is knowing
I directly contribute towards the number of people smiling in my community
and that makes me smile”.

Miss Bavinton is also in private practice working for Positive Health
Strategies Ltd at King Edward VII Hospital, Midhurst, West Sussex. The
Director of Positive Health Strategies is Dr Brian Marien, a psychologist
and CBT therapist who for ten years worked with Peter White at the Chronic
Fatigue Clinic at St Bartholomew’s Hospital, London and who is now the
Clinical Lead for the Sussex NHS “CFS” service. The company information
describes her as “currently leading on a project involving the dissemination
of good practice to therapists nationwide. Jessica is a Human Givens
Therapist, which enables her to take a fully integrated approach
incorporating management of emotional health”

(http://web.archive. org/web/20060118 223755/www. phsmedical. co.uk/theteam. html
).

Miss Bavinton also facilitates fee-paying instruction classes on GET for
health professionals on “How to introduce GET for patients with ME/CFS as
recommended in the NICE Guideline”, one of which took place at Frenchay
Hospital Bristol, on 12th September 2008. This was the first phase of Graded
Exercise Therapy Training. An advanced course is scheduled for December
2008. This training event was also held in Manchester in July 2008.

It is notable that Miss Bavinton was deemed by the GDG selectors to have
more clinical expertise in “CFS/ME” than NHS consultants with a professional
lifetime’s experience of ME/CFS, such as infectious diseases expert Dr
William Weir, neurologist Dr Abhijit Chaudhuri (jointly nominated by
consultant neurologist Professor Leslie Findley and the Medical Adviser to
the ME Association, Dr Charles Shepherd), paediatrician Dr Nigel Speight,
consultant clinician Dr Jonathan Kerr, Professor Julia Newton and Dr Charles
Shepherd. It is also notable that no representative of either the ME
Association or the 25% ME Group for the Severely Affected was permitted to
be a member of the GDG, and that their written applications were perversely
rejected by NICE. This refusal by NICE to permit any representative from the
ME Association, or from the 25%ME Group for the Severely Affected should be
compared with NICE’s Guideline on multiple sclerosis (CG8), where the GDG
was replete with MS charities’ representatives.

Consultant paediatrician Dr Esther Crawley is a leading supporter of CBT/GET
and is dismissive of the regular and consistent patient reports which
identify adverse effects; she is now Medical Adviser to AYME (Association of
Young People with ME), which has adopted the psycho-social model and
actively promotes CBT/GET. As that charity’s founder, Jill Moss, was a GDG
“expert co-optee”, this effectively gave that charity two bites at the same
cherry, whilst denying any representation from the other children’s charity
TYMES Trust (The Young ME Sufferers’ Trust) which does not support the
behavioural model of “CFS/ME”.

It is a matter of record that AYME (and its sibling adult charity Action for
ME) have been the recipients of a Section 64 grant, which would require the
charities’ promotion of CBT/GET for “CFS/ME” and would preclude their openly
supporting a Judicial Review of the NICE Guideline on “CFS/ME”. A S64 grant
is the way in which the Secretary of State for Health, through Section 64 of
the Health Services and Public Health Act 1968, has the power to make grants
to voluntary organisations in England whose activities support the
Department of Health’s policy priorities (in this case, CBT/GET for
“CFS/ME”).

Dr Tony Downes is described simply as a “GP”, but this is misleading,
because his special interest is in Primary Care Mental Health Services. He
sits on the Executive Committee of the Mental Health Research Network,
Wales, alongside Professor Richard Bentall, Professor of Clinical Psychiatry
at Bangor University. (Professor Bentall and his co-author, GDG member Dr
Fred Nye, contributed two of the 18 trials that constituted the NICE
“evidence-base” ). In 2006, the Royal College of General Practitioners’
Mental Health Task Group issued a curriculum statement (No.13) designating
CFS as a mental health disorder that was suitable for treatment in Primary
Care. (For the record, one of the authors of the RCGP’s curriculum statement
No.13 was Wessely’s wife, Dr Clare Garada, who was a Senior Policy Adviser
to the Department of Health). In addition to his involvement with WaMH (the
Wales Mental Health Group in Primary Care), Dr Downes is involved with the
Centre for Mental Health, whose Manifesto “Speaking our Minds” contains the
following: "The Centre will place high emphasis on mental health" and it
quotes Dr Tony Downes at the beginning: "A well mind is a healthy person and
a healthy people is a well nation. Mental wealth (sic) is key to a nation's
economic health and a 'feel good' culture is vital to successful government.
Government policy should promote mental wealth (sic) creation and
distribution. Government and the people should work as co-producers of
mental health and share in the resulting mental wealth". The Manifesto
quotes Wessely almost verbatim: "Up to 50% of hospital outpatients have
symptoms unexplained by modern medicine (medically unexplained symptoms,
somatisation) . The health and social costs resulting from wasted time
through the acquisition of an unhelpful label and the inappropriate
investigations and referrals for functional disorders and syndromes (ie.
mental disorders) are considerable" . (Wessely and the medical insurance
industry refer elsewhere to ME as an unhelpful label, as it implies real,
organic disease, so dropping the label ME was helpful for the insurance
industry, and the Royal College of General Practitioners’ [Wales] submission
to NICE was unambiguous: “Please use the term CFS and stop perpetuating
ME”). On page 5 the Manifesto talks about "respect for the roles of social,
economic (and) occupational problems in determining and shaping
psychological disability”.

It can thus be seen that for Dr Tony Downes to be described by NICE as
simply an innocuous “GP” was disingenuous, to say the least.

Consultant neurologist Dr Richard Grunewald has a special interest in the
interface between neurology and psychiatry, especially “functional”
neurological symptoms. He is associate editor of “Behavioural Neurology”,
whose editors regard “behavioural neuroscience” as “exciting and expanding
fields of research”. In 2005, he published a paper in the
JNNP:2005:76: 307-314 on “predisposing, precipitating and perpetuating
factors” (a Wessely School phrase that permeates the NICE Guideline) and he
stressed the need for the involvement of liaison psychiatrists (Wessely is a
liaison psychiatrist) . Grunewald emphasised that the term “functional” is
more acceptable to patients than the terms “psychosomatic” and “medically
unexplained”. He also emphasised that “functional symptoms can be classified
as manifestations of somatoform disorders” and noted that “functional
symptoms were previously called ‘hysterical’ ”. He went on to talk about
“feigning illness or exaggerating symptoms”.

On 14th October 2006 at a Sheffield ME Group Conference organised by Mrs Ute
Elliott, Chair of the Sheffield ME Group (who was one of the three patients
on the GDG), Dr Grunewald spoke about ME. Amongst other things, he said:
“There is widespread ignorance about ME and the literature doesn’t help”.
That is an insupportable assertion, because there are over 4,000/5,000
peer-reviewed papers on ME/CFS. Grunewald continued: “When the NICE
Guidelines are published I hope this will be the beginning of a sea change.
ME is always the result of stress. The way that has been found most
effective is to address this with a multi-disciplinary approach including
graded activity programmes and addressing psychological issues. Some models
(of ME/CFS) are unhelpful such as the virus model. There doesn’t seem to be
any doubt that for the majority of people there is not a viral trigger”.
Again, this is an insupportable statement, because there is an extensive
international literature about viral involvement in ME/CFS, especially
enteroviruses. Grunewald continued: “The symptoms of ME are so physical but
I’m afraid (the questioner) will not find a physical cause. I find the
development of the NICE guidelines exciting because they represent a change
that’s coming in the NHS approach”.

In 2007, Grunewald published a paper in the journal Psychotherapy: Theory,
Research, Practice, Training (“Engagement in psychological treatment for
functional neurological symptoms – barriers and solutions”,
2007:44:3:354- 360) in which he reiterated his views about “predisposing,
precipitating and perpetuating factors” for “functional neurological
symptoms”, saying such symptoms are “costly to health services and the
economy” but that “patients with functional neurological symptoms are often
hostile to the idea of psychological treatment for symptoms, which they
typically attribute to an undiscovered physical cause” (quoting Wessely
School psychiatrist Michael Sharpe) and that “it has long been recognised
that patients with a long history of chronic symptoms and entrenched support
systems reinforcing illness behaviour can be particularly difficult to
engage” because such patients “were concerned that compliance would prevent
further medical investigations which they felt were necessary”. Grunewald’s
solution was that these patients should receive psychotherapy (as the NICE
Guideline CG53 recommends).

Also in 2007, Grunewald published another paper extolling the virtues of
psychotherapy for people with somatoform disorders, especially for
“non-neurological functional symptoms” (in which he specifically includes
CFS), in which he concluded: “”Psychotherapy may be a cost-effective
intervention for patients presenting with functional neurological symptoms”
(J Psychosom Res 2007:63:625- 632). Citing his own (2005) work, Grunewald
asserted: “It is likely that some functional neurological symptoms are
factitious or malingered”; citing Michael Sharpe (2004), he asserted:
“Patients with functional symptoms are much more likely than patients with
‘neurologically explained’ disorders to attribute their problems to purely
physical causes rather than to emotional or social difficulties” ; citing
Simon Wessely (2002), he asserted: “Functional symptoms are costly to the
health service and to the economy”.

Grunewald’s view about the estimated cost-effectiveness of his favoured
psychotherapy would have endeared him to NICE: “the described therapy is
inexpensive, especially because cost savings from withdrawal of
inappropriate medical treatment were not factored into the estimation of
cost-effectiveness” .

Dr William Hamilton is listed as a GP and researcher. However, he is a
long-standing collaborator with Professor Peter White (Family Practice
2005:22:383- 388; JRSM 2004:97:571- 575) and is a leading proponent of CBT/GET
for “CFS/ME”, which he regards as psychogenic. He is Chief Medical Officer
of two medical insurance companies (Exeter Friendly Society and Liverpool
Victoria, which took over Permanent Health); LV in particular actively
discriminates against “CFS/ME” patients. As such, he was unfit to sit on
the GDG: the Guideline Development Manual requires that anyone with vested
and conflicting interests must declare those interests before being
appointed to a GDG, so it is anticipated that the Judge will enquire whether
Dr Hamilton failed to declare such interests, or whether he did so, but the
chairman (Professor Richard Baker) failed in his duty by permitting Hamilton
to sit on the GDG.

Hamilton’s views about CFS are unequivocal: “The higher number of GP
consultations in patients who develop CFS can be explained by perceiving
symptoms more readily as illness. Cognitive behavioural therapy, which
addresses beliefs about symptoms and illness, in particular those that can
block recovery, is the only treatment shown to be helpful. We consider that
more emphasis should be given to this area, both for funding treatment and
for research on CFS” (British Journal of General Practice 2001:51
(468):553-558) .

Hamilton’s conclusions were attacked by Professor JC Murdoch in the BJGP, to
which Hamilton took exception. He replied by asserting: “No abnormality has
been demonstrated with CFS. Extensive searches for immunological,
infectious or endocrine explanations have drawn a blank”, an astonishing
assertion that is readily disproved by a survey of the scientific and
medical literature. More troubling is Hamilton’s interpretation of his own
study and his demand that CFS researchers and clinicians examine their
beliefs against his findings and see how well they match (Co-Cure RES. NOT:
21st December 2001).

In an earlier paper, Hamilton stated that his information came from an
insurance company records. Contrary to the international evidence, his own
study found no specific viral or immunological explanation for CFS and he
concluded: “abnormal illness behaviour is of greater importance than
previously recognised” (JRCP Lond 1998:32:44-48) .

It seems to be the case that Dr Hamilton was head-hunted to be a member of
the GDG under the chairmanship of Professor Baker specifically because of
his published views on CFS/ME. This is clear from the R&D (Research and
Development) annual reports by NHS organisations in England for 2006:

“Dr Hamilton’s CFS/ME work has generated publications that have been widely
read and his work generated the invitation to join the NICE guideline
development group for the treatment of CFS/ME which is due to report in
2007” (http://www.nrr. nhs.uk/2006Annua lReports/ Section2A- 2E.asp?O= 582 ).

Community Dietician Judith Harding was a member of the CNCC Collaborative
2004 – 2006, CFS/ME Service Investment Programme 2004 –2006, “Enabling
People”: Implementation of Clinical Service Developments for
Multi-Disciplinary Chronic Disease Management, Penninsula Medical School,
CFS/ME Programme (Clinical Lead: Professor Anthony Pinching; Programme
Director: Patricia A Noons).

Dr Fred Nye, Clinical Champion of the Liverpool “CFS” Clinical Network
Co-ordinating Centre, achieved notoriety in 2005 when an advertisement for
“therapists” to work in his Centre caused justified offence. The
advertisement informed applicants patients with “CFS/ME” have perpetuating
illness behaviour; that they experience barriers to understanding; that
there can be significant barriers to accepting the changes needed in
behaviour, which have to be overcome in therapy in order to facilitate a
successful outcome; that the Fatigue Therapist will be required to modify
patients’ predisposing personality style and provide motivation to patients
with CFS; that some clients may be resistant to working in a psychological
framework and that there may be verbal aggression (Chronic Fatigue Treatment
Service: Ref: 2570. Closing date: 31st January 2005).

In 2001, Nye published his view in the BMJ (2001:322:387- 390) that “CFS”
patients “develop a strong physical perception of the condition” and that
“Extensive research has failed to identify any serious underlying
pathology”. Such a statement is easily shown to be erroneous. Nye
continued: “Reduction in activity results in cardiovascular and muscular
deconditioning, which exacerbates symptoms. We have developed a treatment
for CFS (that) involves educating patients about the medical evidence of
physical deconditioning” . The article re-iterated the take-home message:
“No serious underlying pathology has been identified in patients with CFS.
Cognitive behaviour therapy targeted at changing illness beliefs and graded
exercise helps some patients”. However, Nye was compelled to concede that an
intention to treat analysis showed that 32% of patients still complained of
fatigue one year later.

In a follow-up study published in the British Journal of Psychiatry in
2004:184:142- 146, Nye had not changed his beliefs about CFS/ME. Despite his
own acknowledgement in 2001 that 32% of patients in the trial still
complained of fatigue at one year, the 2004 study stated that at one year,
“treated patients showed significantly greater improvement in measures of
fatigue”. He was obliged to record that “One patient who had received
treatment died by suicide in the follow-up period (but) it seems unlikely
that this was an adverse reaction to the treatment”. Nye also had to record
that patients who withdrew from treatment were not followed up.
Nevertheless, his take-home message was: “Providing patients with
physiological explanations of symptoms of chronic fatigue syndrome to
encourage graded exercise produces long-term benefits in outcome”.

Both papers used the Oxford criteria, so no conclusions can be drawn about
the efficacy of Nye’s interventions for people with ICD-10 ME/CFS.

Of relevance is the fact that Nye failed to make a full disclosure of
competing interests to the extent that the independence of the GDG’s
decision-making process was called into question: two of his research
projects were cited in the York Systematic Review and were approved of by
himself as a member of the GDG, so in effect Nye was supporting and voting
for his own work. Not declared either was the fact that two of Nye’s
co-authors are currently in receipt of a £824,129 MRC grant for “CFS/ME”
research.

It is clear from his letter in the Journal of Infection (2007:55:6:569- 571)
that Nye is actively hostile to patient opinion, and there are disturbing
reports of abrasive treatment of patients attending his CFS/ME clinic. For
someone who is a committed Anglican lay preacher (at St Faith’s, Great
Crosby, Liverpool, where his wife, Mrs Linda Nye, is the parish Child
Protection Officer), this is especially disquieting.

Ms Amanda O’Donovan is a clinical psychologist at St Bartholomew’s Hospital.
In March 2005 she was appointed CNCC co-ordinator for the CFS/ME Centre
based at Barts, headed by Professor Peter White; as Lead Clinical
Psychologist, she is heavily involved with the psychosocial model of
“CFS/ME” and she promotes the use of CBT/GET for “CFS/ME”. She has attempted
to justify its use by insisting that CBT is used in other “physical”
conditions such as stroke, diabetes, chronic pain and cancer

(http://health. groups.yahoo. com/group/ IMEGA-e/message/ 24450 ). However,
Cancer Research UK has confirmed in writing that they are unable to accept
that this is the case. In the other conditions mentioned by Ms O’Donovan,
CBT is used as adjunctive support, not as the primary (and only) management
intervention as is the case in ME/CFS.

Dr Alastair Santhouse is a Consultant Liaison Psychiatrist who works with
Simon Wessely (the foremost proponent of the psycho-social model of
“CFS/ME”) at the Chronic Fatigue (sic) Research and Treatment Unit, Kings
College Hospital, London. His Head of Service is Professor Trudie Chalder.
Santhouse failed to declare that his employer (Trudie Chalder) is in receipt
of part of a £2 million MRC grant for the PACE trial that is investigating
CBT/GET for “CFS/ME”, nor did he declare that his employer’s research papers
constituted 11% of the NICE “evidence-base” in alleged support of CBT/GET.
His employer would thus be a prime beneficiary of a NICE recommendation of
CBT/GET for “CFS/ME”. In 2004, Santhouse published “The 10 chronic fatigue
syndrome commandments” (Doctor, 26th February 2004) in which he stated: “CFS
is the accepted name among professionals but many patients still prefer the
name ME. Attribution of illness to a purely physical cause appears to
predict a poorer response to treatment. The best research evidence is for
CBT and/or a graded exercise programme”. In 2005, Wessely wrote a Foreword
for Santhouse (“Fatigue as a Window to the Brain”; Psychological Medicine
2005:337:a2331) . It is noted that Santhouse sponsored Simon Wessely’s cycle
ride to Paris in 2007. It may also be noted that Santhouse is on record as
asserting: “Psychiatry is the noblest branch of medicine” and that he states
of himself: “At times I am carried away by the nobility of my calling” (BMJ
2008:337:a2331) .

Dr Julia Smedley is an Occupational Health Physician whose main interest is
in occupational risks to healthcare workers. Her publications include “A
survey of the delivery and uptake of influenza vaccine among healthcare
workers” (Occup Med 2002:52:271- 276); “Respiratory illness in agricultural
workers” (Occup Med 2002:52:451- 459); “Effectiveness of an influenza vaccine
programme for care home staff to prevent death, morbidity and health service
use among residents” (BMJ 2006:333:1241) and “Influenza immunisation:
attitudes and beliefs of UK healthcare workers” (Occup Environ Med
2007:64:223- 227). Wessely School psychiatrist Professor Michael Sharpe is
very active in the world of Occupational Health and Insurance Medicine and
his views permeate the world of Occupational Medicine (i.e. that ME is a
“pseudo-disease” that can be “cured” by CBT and that ME sufferers who
“refuse to accept the stigma of mental illness remain the undeserving sick
of our society and health service”).

As the Guideline Development Manual stipulates that GDG members must be
disease-specific experts, it will be interesting to hear NICE’s explanation
to the Judge as to why Dr Smedley was deemed to have more clinical expertise
in the disorder in question than, for example, Dr William Weir, Dr Jonathan
Kerr, Dr Abhijit Chauduri, Professor Julia Newton or Dr Charles Shepherd.

However, Dr Smedley was involved with the production of the Department of
Health’s NHSPlus Report “Occupational Aspects of the Management of Chronic
Fatigue Syndrome: A National Guideline” published in October 2006, whose
Guideline Development Group included Professor Trudie Chalder and whose
“external assessors” were psychiatrists Professor Michael Sharpe and
Professor Peter White. This National Guideline was based on the behavioural
model of “CFS/ME” and made exaggerated claims for the effectiveness of
CBT/GET in returning people with “CFS/ME” to employment. This exaggerated
claim was based on six studies, three of which were co-authored by Trudie
Chalder and one was co-authored by Peter White. The National Guideline was
severely criticised to the extent that 25 UK ME/CFS organisations signed a
joint Statement condemning it as unfit for purpose. Its conclusions were
comprehensively discredited by an authoritative American systematic review,
which concluded: “No specific interventions have been proved to be effective
in restoring the ability to work” (SD Ross et al. Arch Intern Med
2004:164).

Dr David Vickers, Clinical Lead, children and young people with CFS/ME
service, was the second paediatrician on the GDG (the other being Dr Esther
Crawley). It is notable that both Drs Crawley and Vickers are known
supporters of the psycho-social model of “CFS/ME” and that the UK’s senior
paediatrician whose 25 years’ experience afforded him unique expertise in
paediatric ME/CFS and who was a member of the 1994 UK Task Force on ME/CFS
but who does not support the psycho-social model (Dr Nigel Speight) was not
permitted to be on the GDG. Dr Vickers holds the post of Registrar to the
Royal College of Paediatrics and Child Health (RCPCH). In his Application
Manifesto for the post of Registrar, Vickers wrote: “The most important role
is supporting the President and other Senior Officers”. The views of the
RCPCH bear little relationship to children and young people with ME/CFS. The
College’s view of ME/CFS is that it is a behavioural disorder. The RCPCH
report, in the production of which Dr Vickers was a Delphi participant
(“Evidence-based Guidelines for the Management of CFS/ME in Children and
Young People”, published in December 2004) emphasised behavioural
interventions: “Children and young people with CFS/ME should be considered
for graded exercise or activity programmes” and contributors referred to the
“emotional dimensions of the illness” and stated: “The overarching aim of
CBT is to help patients modify their behaviour for their own benefit”.

Gillian Walsh is a nurse who is the Network Co-ordinator for the Manchester
“CFS” Centre. She, as is Miss Bavinton, is involved with Human Givens
Therapy and whilst she was on the GDG was working towards a diploma from the
Human Givens Institute. She has a private Human Givens practice in
Manchester, which is described as her “helping career”. She uses the letters
“ M.FETT” after her name, which stand for the “Fellowship of Eclectic
Talking Therapists”. This is explained as being a “professional body for
ethical counsellors and hynotherapists who use techniques as best suits the
client”. She is referred to as “an experienced counsellor and
psychotherapist” and helps patients to reach their goals and aspirations.
She is also a reflexologist (with a Diploma from the Centre for Advanced
Reflexology) and a hypnotherapist. Her employer at the Manchester CNCC is
liaison psychiatrist Dr Damien Longson, chairman (replacing Professor
Anthony Pinching) of the CFS/ME Clinical Network Co-ordinating Centres
Collaborative. He is also the Lead for audit of these Centres, in
collaboration with GDG members Dr Esther Crawley and Dr Fred Nye, together
with Professor Peter White.

Carol Wilson is Lead Occupational Therapist for the Cornwall CFS/ME Service
and is CFS/ME Network Co-ordinator for South West Peninsula. The Lead
consultant of the Cornwall CFS/ME Service is Professor Anthony Pinching.

Dr Philip Wood has been a consultant immunologist at Leeds since January
2002. He failed to declare that he was a member (2004-2006) of the CFS/ME
Service Investment Programme (whose Clinical Lead was Professor Anthony
Pinching and whose Programme Director was Patrician Noons). He also failed
to declare that he was a member (2004 – 2006) of the CNCC Collaborative.
His main interest is in adult and paediatric allergy, but he has an interest
in “chronic fatigue” (note: this is not the same as ME/CFS). He has
published one study on allergic disease in children (Eur J Pediatr
2005:164:741- 747). He is a clinician in the Leeds & West Yorkshire CFS/ME
Service, whose 2008 booklet “Goal Setting” says the following: “CFS/ME is a
diagnosis that does not fit under one specific medical speciality. Complex
referrals may be seen initially by a physician and liaison psychiatrist.
Unfavourable prognosis is associated with prolonged duration of symptoms
(and) untreated beliefs around the need for purely physical treatment. The
Leeds & West Yorkshire CFS/ME Service finds that if the practitioner can
demonstrate why a diagnosis has been made, then that patient will start to
engage in taking some responsibility in managing the effects of CFS/ME. The
Leeds & West Yorkshire CFS/ME Service has three components: 1) Medical
assessment by Dr Philip Wood; 2) Biopsychosocial assessment and
considerations of interventions in liaison psychiatry led by Dr Hiroko Akagi
and 3) Therapy Services, led by Sue Pemberton, occupational therapist. We
all need goals to move forward in our lives. Without specific goals we can
feel demotivated. This can have an impact on how we feel about ourselves.
Setting and working towards a goal releases energy. How do you feel when
you have no goals? The therapist within the team will help you with goal
setting”. The “Useful Books” list contains only books by Wessely School
members (Trudie Chalder’s “Coping with Chronic Fatigue”, which has nothing
to do with ME/CFS; “Overcoming Chronic Fatigue” by Trudie Chalder & Mary
Burgess; and a book by psychiatrist Michael Sharpe, co-authored by Frankie
Campling, a Wessely School supporter). Bearing in mind that many ME/CFS
sufferers are professional people, such a superficial approach is an affront
to their intelligence and cannot help people deal with vertigo,
cardiomyopathy, pancreatitis, dysautonomia, adrenal insufficiency or
vasculitis, all of which are well-documented key features of ME/CFS.

None of these GDG “experts” had anything to offer people with ME/CFS, but
everything to offer the pre-determined agenda of the NICE Guideline CG53 to
recommend CBT/GET across the nation. None of them is a “disease-specific”
expert as required in the Manual, but no expert dissenting voices were
permitted to be GDG members. The result is the recommendation of
inappropriate behaviour-modifying interventions for people with a serious
multi-system disorder who are unable to benefit from the recommended
interventions.

It is the case that the Wessely School were unsuccessful in obtaining their
intended outcome (i.e. that ME does not exist as a nosological disorder and
that CFS – onto which they patronisingly tagged ME to read CFS/ME – is a
somatoform disorder) in both the 1994 National Task Force Report and also in
the 2002 Chief Medical Officer’s Working Group Report on CFS. Indeed, it is
reported that Peter White was jubilant when he believed he had been
successful in covertly removing from the latter Report the provision for
children to receive home tuition (after it had been agreed), and that he
argued against the need for the final meeting before the Report’s
publication. However, it is reported that the chair (Professor Allen
Hutchinson) was persuaded to permit the final meeting (which Peter White
believed had been cancelled), at which the provision for home tuition that
Peter White had removed was re-instated. It is a matter of record that five
Wessely School members were so incensed that they did not get their own way
that they “walked out” and refused to sign up to the final Report. Those
five members were psychiatrists Professor Peter White; Professor Elena
Garralda and Dr Anthony Cleare; Trudie Chalder (fatigue therapist), and Dr
Alison Round (a community physician and co-author with GDG member Dr William
Hamilton).

It seems irrefutable that, having been thwarted twice in the past, in the
production of the NICE Guideline on “CFS/ME”, the Wessely School were
ruthlessly determined to be successful to the extent that every single
professional member of the GDG was carefully selected and could be relied
upon to support the somatoform model of “CFS/ME” and the recommendation of
CBG/GET.

NICE’s explanation for this unequivocal bias is eagerly awaited. That NICE
deliberately and intentionally excluded every single ME expert in the UK
from membership of the Guideline Development Group is a scandal that will
hopefully be exposed under the spotlight of a High Court Judicial Review.

There were many other failures of the GDG to adhere to the Manual which the
Judge may choose to address at the High Court Hearing, not least the GDG’s
failure to identify and define the disorder to which the Guideline purports
to relate.

Conclusion

No-one could have summed up the situation better than Hayley Klinger in a
letter to The Times Online on 11th December 2008: “Despite thousands of
medical research papers showing immunological, neurological, endocrine,
cardiac and gene expression involvement in ME, it is thought of as an
illness of fatigue and even called chronic fatigue syndrome by the media and
some doctors”.

And as Hilary Patten so aptly wrote in a letter to The Sun on 12th December
2008: “American research has proved ME is caused by a viral and bacterial
infection. But over here, health guidelines drawn up by psychiatrists, only
allow psychological interventions for sufferers. It is an absolute scandal”