A NICE DILEMMA? -death from ME/CFS not prevented by CBT/GET

[Guest guest]

Because my health is bad, I can't post my bulletin

regularly - I will make an exception for very

important articles like the one below.

```````

Reasons for Judicial Review of the NICE Guideline

References:

*CFS/ME* -Reasons for Judicial Review of the

NICE Guideline -Prejudice-based Medicine?

By Margaret -Help ME Circle, 28 October

2008

http://rapidshare.com/files/164598389/MargaretW_CFS_ME_Reasons_for_Judicial_Revi\

ew__of_the_NICE_Guideline.doc

CBT cannot improve ME/CFS -Background inf. &

illustr. of evidence, which NICE disregarded

By Margaret -Help ME Circle, 30 October

2008

http://rapidshare.com/files/160499897/MargaretW_CBT_cannot_improve_ME_CFS_Backgr\

ound_inf___illustr_of_evidence_which_NICE_disregarded.doc

ME/CFS & Dangers of Graded Exercise

By Margaret -Help ME Circle, 2 November

2008

http://rapidshare.com/files/160141234/MargaretW-ME_CFS___Dangers_of_Graded_Exerc\

ise.doc

ME/CFS -Evidence Cardiovascular Problems, that

NICE disregarded

By Margaret -Help ME Circle, 7 November

2008

http://rapidshare.com/files/161565834/MargaretW-Evidence_of_cardiovascular_probl\

ems_in_ME_CFS.doc

ME/CFS -Immunological, neuroendocrine &

neurological documented evidence

By Margaret -Help ME Circle, 17 November

2008

http://rapidshare.com/files/164598867/MargaretW_ME_CFS_Immunolog_neuroendocr_neu\

rolog_evidence_inc_evidence_CNS_Infl.doc

````

The article below by Margaret is also

specifically created for the Judicial Review of the

NICE Guideline.

I have edited the article in such a way, that it

is easier readable for ME/CFS patients. For private

members the text in the original formatting, is

attached as a doc document, which can also be

downloaded from:

http://rapidshare.com/files/174760198/MargaretW_A__NICE__DILEMMA_.doc

The article *Medication and ME* in this series will be

posted as soon as possible

~jvr

````````

A NICE DILEMMA?

Margaret

15th December 2008

ME/CFS in the US

In the Summer 2008 issue of The CFIDS Chronicle

published by The CFIDS Association of America,

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.prohealth.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.prohealth.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/triggering 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 ( 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 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 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

White, and even Professor Bass himself, in these

tragic cases? White is on record as affirming

that CBT/GET can cure " CFS/ME " ( " Is full recovery

possible after CBT for CFS? " ; Hans Knoop,

White et al; Psychotherapy & Psychosomatics

2007:76:171-176).

Professor 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 " ; 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 Turnbull to correct their responses

(see email sent on 3rd May 2006 at 2.26pm from

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 lind

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

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, 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 Pinching and Noons,

who " advised " the GDG chairman Professor

Baker (who was himself chosen by 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 " . ( J Pinching. Prescribers'

Journal 2000:40:2: 99-106).

Noons has a reputation of being unhelpful to

ME/CFS patients, for example, internet notice boards

contain the following: " 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 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 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

reaffirming that, after talking to the MRC trial

researchers (ie. the Wessely School), he did not

believe this to be the case.

Bavinton (physiotherapist) previously worked

with psychiatrist Professor 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 White, she is involved in the medical

insurance industry (for example, with ish

Provident and Swiss Re, of which 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 ish

Provident (i.e. before publication of the Guideline)

are unequivocal: one is addressed to

Bavinton at Conan Doyle Consulting Rooms, 2 Upper

Wimple Street, London W1G 6LD and says: " Dear

, 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

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 VII

Hospital, Midhurst, West Sussex. The Director of

Positive Health Strategies is Dr Marien, a

psychologist and CBT therapist who for ten years

worked with 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. is a Human Givens Therapist,

which enables her to take a fully integrated approach

incorporating management of emotional health " :

http://web.archive.org/web/20060118223755/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 Weir, neurologist Dr

Abhijit Chaudhuri (jointly nominated by consultant

neurologist Professor Findley and the Medical

Adviser to the ME Association, Dr Shepherd),

paediatrician Dr Nigel Speight, consultant clinician Dr

Kerr, Professor Newton and Dr

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 form 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 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 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 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

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 Hamilton is listed as a GP and researcher.

However, he is a long-standing collaborator with

Professor 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 , 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 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/2006AnnualReports/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

Pinching; Programme Director: 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 Nye, is the parish Child

Protection Officer), this is especially disquieting.

Ms 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 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 Smedley is an Occupational Health Physician

whose main interests 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 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 Weir, Dr Kerr,

Dr Abhijit Chauduri, Professor Newton or Dr

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 Sharpe and Professor 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 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 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 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

White.

Carol 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 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 Pinching and whose

Programme Director was n 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 & Burgess; and a book by psychiatrist

Sharpe, co-authored by ie 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 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

Hutchinson) was persuaded to permit the final

meeting (which White believed had been

cancelled), at which the provision for home tuition

that 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

White; Professor Elena Garralda and Dr

Cleare; Trudie Chalder (fatigue therapist),

and Dr Alison Round (a community physician and

co-author with GDG member Dr 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 CBT/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 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 " .