• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Memo to NICE re: CG53 revision - Margaret Williams - 31st August 2010

Permission to Repost


Memo to NICE re: CG53 revision

Margaret Williams

29th August 2010

In addition to Professor Hoopers formal complaint to the Medical Research
Council (MRC) about the PACE Trial on ME/CFS, there is the related matter of
the failure of the National Institute for Health and Clinical Excellence
(NICE) to pay heed to the same concerns and its failure to consider the
available biomedical evidence when it produced its 2007 Guideline CG53 on
ME/CFS that was described by the ME Association and others as unfit for

It may be recalled that a copy of Professor Hoopers complaint Magical
Medicine: how to make a disease disappear
(http://www.meactionuk.org.uk/magical-medicine.htm) was sent to Professor
Sir Michael Rawlins, Chairman of NICE, and that he refused even to look at
it, let alone to consider with due attention the disturbing and fully
referenced evidence it contained. In his letter dated 2nd March 2009
returning the unopened document to Professor Hooper he wrote: I am not
prepared to enter into any correspondence on this matter. I am returning
your document.

Many people held this to be a blatant dereliction of duty by Sir Michael.

All the professional members of the NICE Guideline Development Group (GDG)
that produced CG53 provided signed Witness Statements for the Judicial
Review of CG53 held in the High Court in February 2009. Those Witness
Statements have not yet entered the public domain but it is clear that there
were very serious issues about the selection of virtually every professional
member of that GDG, at least one of whom is currently facing a formal
investigation by the General Medical Council for allegedly knowingly
misleading the High Court, which allegedly contributed to a grave
miscarriage of justice. If found guilty, a charge of perjury automatically
carries a custodial sentence.

NICE was scheduled to re-visit CG53 in August 2010 and is asking the same
GDG members to decide whether or not there should be any review at all at
the present time (message posted by GDG lay member Richard Eddleston on
LocalME@yahoogroups.com 26th August 2010 and message posted by the Medical
Advisor to the ME Association: ME Association Summary and Statement on Lo
et al paper, 25th August 2010).

In view of the recent evidence of a strong association between ME/CFS and a
family of MLV-related retroviruses -- a link described by Dr Harvey Alter
(one of the authors of the Lo et al PNAS study) as a dramatic association
with chronic fatigue syndrome (Los Angeles Times, 14th August 2010), it is
timely to question whether the current GDG members are competent to assess
the importance of this finding.

This must be in doubt because, despite the fact that the 2002 Report of the
Chief Medical Officers Working Group referred to the evidence showing that
numerous infections are involved with the disease, those same GDG members
also ignored the already unarguable evidence of viral involvement in ME/CFS
and recommended that physicians should not carry out testing for viruses on
patients with the disorder, even though none of the GDG members was a

Will the now-changed policy of the UK Department of Health to impose a
lifetime ban on blood donation by people with ME/CFS encourage members of
the GDG to reflect on the fact that the psycho-behavioural Guideline they
produced in 2007 may have had the effect of jeopardising the safety of the
UK blood supply? This seems unlikely, given the extent and scientific
calibre of the evidence that the GDG members decided (or alternatively were
instructed) to disregard when producing CG53.

Clara Swinson, Director of Health Protection at The Department of Health,
has confirmed to the ME Associations Medical Advisor: As of 1st November
2010, blood donors who report that they have had ME/CFS will be permanently
excluded from giving blood in the UKas ME/CFS is a relapsing condition. It
brings practice for ME/CFS into line with other relapsing conditions or
neurological conditions of unknown origin. The change to donor selection
criteria is being made following a recommendation by the UK Blood Services
Standing Advisory Committee on the Care and Selection of Donors
(correspondence between the ME Association and the interim Chief Medical
Officer, Professor Dame Sally Davies, about UK blood donation).

It was argued during the Judicial Review that GDG members ignored the
biomedical evidence and placed undue reliance on the
psycho-social/behavioural model of the disease.

As recently noted ( http://www.meactionuk.org.uk/Update-on-MRC-complaint.htm
), GDG member Dr Esther Crawley is a supporter of the psycho-social model of
ME/CFS and is about to study the effects of the Lightning Process on
children (some as young as 8 years old) and young people who suffer from the
disorder. The Phil Parker Lightning Process is an intervention that is being
used for a variety of conditions, particularly ME/CFS, and is based on
neuro-linguistic programming and life coaching (
http://www.bristol.ac.uk/news/2010/6866.html ). It is a three-day training
programme run by practitioners who are trained and licensed only by the Phil
Parker organisation. Lightning Process practitioners may charge up to 880
for three-day training sessions; the practitioners are not accountable to
any professional body and there are no random controlled trials of its
efficacy in adults (held by the MRC to be necessary before trials are
carried out on children). The training sessions include the participant
standing on paper circles with positive phrases written on them, with the
participant required to affirm phrases such as I have a choice; I choose
the life I love and I want energy and happiness.

Of note is the fact that an advertisement placed by one of the Lightning
Process practitioners who had previously identified himself with Dr
Crawleys trial (Alastair Gibson) was recently censured by the Advertising
Standards Authority for making the misleading and unsubstantiated claim that
the Lightning Process was an effective treatment for ME/CFS (
n/TF_ADJ_48612.aspx ).

The charity Action for ME (AfME) has twice published data showing negative
experiences with the Lightning Process (InterAction magazine, March 2007 and
AfMEs Patient Survey data published in 2008, which record a worsening of
symptoms following the Lightning Process training programme), yet AfME
continues to support Dr Crawleys trial: Action for ME sees no reason to
oppose this study (published on AfMEs Facebook). As noted in Magical
Medicine, AfMEs members might wish to consider why a charity that was
formed to support people with ME should now work so closely with those who
believe them to be mentally ill.

Dr Crawleys study is co-funded by The Linbury Trust, a Sainsbury family
trust that has supported the Wessely School since 1991; its published view
about ME/CFS is: we can state confidently that CFS is not an inflammation
of brain or muscle disease.Under names such as neurasthenia, effort
syndrome and myalgic encephalomyelitis (ME), chronic fatigue has generated
medical debate for more than a centuryThe Linbury Trust was an early player
in this story, and has funded the great bulk of CFS research conducted in
the UK (A Research Portfolio on Chronic Fatigue, edited by Robin Fox,
published by The Royal Society of Medicine 1998). The Linbury Trusts
mission statement is that patients with fatigue and psychological defects
are predisposed to develop ME/CFS because they misattribute their symptoms
to a physical cause, prompting them to avoid physical activity and thus
become deconditioned, which perpetuates fatigue and psychological
disturbance. Many people find it troubling that Dr Crawley has chosen to
align herself with an non-medical intervention that claims to be able to
cure a serious neuroimmune disorder within three days, sometimes even in one
day, and that her views should again be sought over a matter of such
importance as a revision of the very Guideline with which she was so
intimately involved.

Another GDG member, Dr David Vickers is, like Dr Crawley, a paediatrician;
he is Consultant Community Paediatrician in Cambridge and since 1991 has
been the Designated Doctor for Safeguarding Cambridge; he is Clinical Lead
for Community Paediatrics for his Primary Care Trust and for the Children
and Young Peoples CFS/ME Service in Cambridgeshire and Peterborough.

He also 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 RCPCH considers ME/CFS to be a
behavioural disorder; its Report of December 2004 (Evidence-based Guidelines
for the Management of CFS/ME in Children and Young People), in the
production of which Dr Vickers was a participant, 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.

Dr Vickers views seem to sit uneasily with the views expressed in the large
Cambridgeshire ME Support Group, who strongly supported the urgent need for
a Judicial Review of CG53.

Dr Vickers clinical judgment and competency in an alleged child abuse case
were questioned in a recent High Court action. On 23rd August 2010 the BBC
Panorama programme (Please dont take our child) revealed that his
evidence as an expert witness was rejected by the High Court in the case of
baby William Ward, whose parents fought and won a lengthy legal battle to
disclose Dr Vickers name publicly. Vickers had told the police that without
an explanation for the babys fractured leg, the cause of his injury was
that it was inflicted. The case against the Wards relied on the view of Dr
Vickers and others, namely, that if no obvious explanation could be found
for an injury, then child abuse was likely. The parents were arrested and
charged by the police and were threatened with having their child taken away
from them by Cambridgeshire social workers and both parents were suspended
from their jobs. However, the Judge did not accept Dr Vickers argument,
stating: There is no cogent evidence that these parents injured their son
(Parents win legal battle to name doctor who accused them of child abuse.
Patrick Sawer; Telegraph, 22nd August 2010).

There has never been any cogent evidence that ME/CFS is a somatoform
disorder either, but that has not prevented Wessely School psychiatrists and
those UK agencies which they advise (including the MRC, the Department for
Work and Pensions and NICE, as well as the medical and permanent health
insurance industry for which they work) from ruthlessly and callously
treating it as such, nor Professor Wessely from recently stating (verbatim):
i can say that i remain very content and indeed proud of the contribution i
and many of my colleagues have made in improving the management of this
condition (
with-professor-simon-wessely-part-2/ ).

It may be worth recalling that Wessely also boasted that his team influenced
the NICE Guideline (R&D annual reports by NHS organisations in England for
2007: South London and Maudsley NHS Trust: Section 2A) and that he is on
record in a BMJ podcast on 5th March 2010 as asserting: Were not going to
go doing more and more tests to find out what was the virus because,
frankly, even if we found it theres nothing were going to do about it
(http://podcasts.bmj.com/bmj/2010/03/05/chronic-fatigue-syndrome/ ). Many
people believe that this was a reprehensible thing for Professor Wessely to
say about people who are desperately sick and in whom multi-system
abnormalities have been found, including high levels of inflammatory
markers, immune system dysfunction, abnormal brain scans, abnormal muscle
structure and function and abnormal cardiovascular function.

It is essential that NICE should start paying attention to the biomedical
evidence and stop supporting what many regard as cargo cult science (which
in the case of ME/CFS seems to be the creation of policy-based evidence
instead of evidence-based policy). Cargo cult science is a term used to
describe work that has the semblance of being scientific but -- whilst
following the apparent precepts of scientific investigation is lacking
intellectual honesty; it is flawed research that fails to produce genuine

Whilst no-one reasonably objects to the prudent monitoring of escalating NHS
costs, NICE seems to have become the draconian arm of the Department of
Health to the extent that its raison detre now seems to be only to save
money, not to alleviate human suffering.

Recently NICE confirmed that: Clinical Guidelines represent the view of
NICE, and are arrived at after careful consideration of the evidence
available. Healthcare professionals are expected to take it fully into
account when exercising their clinical judgement and the Chief Medical
Officer separately confirmed: Once NICE guidance is published, health
professionals (and the organisations who employ them) are expected to take
it fully into account when deciding what treatments to give people (
http://tinyurl.com/3xe49ow ), so it is essential that NICE does not continue
to dismiss the now-extensive biomedical evidence about ME/CFS and does not
allow itself to be inappropriately influenced by those with vested
commercial interests (for example, the medical and permanent health
insurance industry which, in the case of UNUMProvident, now advises and
influences the UK Department for Work and Pensions about ways to reduce the
number of those eligible for sickness/disability benefit payments).

NICE was set up in 1999 under the New Labour Government ostensibly to
establish good practice in the NHS in England and Wales and it seems to be
failing in its duty to people with ME/CFS by dismissing the large body of
biomedical science that has been published about it and instead promoting
ideologically-driven and harmful interventions that, in apparently favouring
commercial interests, actually prevent physicians from adhering to the first
tenet of medicine: first do no harm.



Senior Member
Brilliant article from a group of excellent advocates at meactionuk.

Thanks for posting it.

When the people who refused to even look with their eyes at biomedical research are asked, why didn't they look...there may be a long pause.
Especially when ME is proven an infectious transmitable disease from human to baby to human.

What a disgrace the UK Department of Health and it's NHS is, for having a policy of treating an infectious neurological disease (ME) as a behavioural illness called 'CFS/ME''.
Dual coding a disease with a forward slash is expressely forbidden by the World Health Organisation.

The Brits went ahead and did it anyway, knowing no one would give a damn.


Fine, thank you
Very pleased to see this - very strong piece of advocacy. It will be interesting to see what comes back.


Senior Member
Always good to read Margaret Williams - one of our best (and Prof. Hooper). Thanks for posting.