SUMMARY OVERVIEW OF SOME INITIAL RESPONSES
TO THE NICE DRAFT GUIDELINES ON ME/CFS
The following are points arising from a discussion with Simon Lawrence of the 25% ME Group:
1.
a) Any 90 minute consultations with severely affected ME patients are far too long – 15/30 minutes at most may
be feasible for those able to use the telephone. Many would not be able to use the telephone, as they have
enough physical problems managing to do the simplest of tasks like washing, dressing and feeding themselves.
Face to face consultations, even for periods of this duration may cause great strains for such patients. Also if all
that would be offered was CBT and/or GET, this would be unacceptable, as past experience by many has shown
these approaches to be a futile and useless exercise and GET to be potentially harmful. If consultations would
offer personal support and advice, this may be helpful.
b) If CBT and especially GET, which are recommended for all CFS/ME patients (including those mildly or
moderately affected) are implemented, this will lead to many more cases of severely affected patients in due
course (based on results of patient surveys).
c) The draft was compiled based on a complete misconception of ME and this is perpetuated.
d) The draft does not mention involvement of Social Services, e.g. consider support services, like help with
personal care, shopping, house work, cooking, adaptations in the home etc, i.e. basic support for the very ill.
2.
Simon Lawrence of the 25% ME Group has issued comments on this draft consultation document, which have
been circulated on the Internet. A copy of this is enclosed.
The following are some initial comments to these draft guidelines made by severely affected patients and/or their
carers:
3.
“The draft is not talking about authentic ME (classified by the WHO as a neurological disease since 1969 and in
ICD10 under G93.3). It still is classified under G93.3 in the 2006 WHO issue. The draft talks about a single
somatoform disorder, including IBS, FM, CFS, TMJ etc (according to S Wessely et al’s 1999 Lancet paper)”.
“The draft relies on the 1991 Oxford criteria, which have never been used or adopted by anyone, except Wessely
School adherents and which by definition should exclude those with ME (WHO classified as a neurological
disease).”
“The draft stresses the need to supply patients with correct evidence-based information, but ignores the massive
amount of international evidence that ME is a complex neuro-immune-vascular disease at endothelial level (i.e.
that it is an inflammatory-mediated response causing endothelial swelling and arterial stiffness with hard
evidence of isoprostanes not seen in any other known disorder.”
“It is untrue to say that ME is ‘medically unexplained’ – numerous anomalies which explain the
symptomatology are well documented, but the cause(s) of those anomalies are still to be determined.”
“The draft advocates strategies which are potentially lethal for those with severe authentic ME, in whom there is
already a degree of cardiac failure.”
“A clash in the European and domestic courts between the NICE/NHS and patients now looks inevitable (for
which the biomedical ME community is now sadly being forced to prepare). As early as 1996, in response to
this disgraceful Wessely cabal had upon the Royal Colleges’ report on ‘CFS/ME’, the then editor of The Lancet
knew exactly what was going on, stating ‘Medical paternalism seems alive and well in Britain today.’ Quite.
And ditto ever since.”
“The title itself lacks clarity. Using the term ‘encephalopathy’ as well as Chronic Fatigue Syndrome and
Myalgic Encephalomyelitis already leads to a confusion of terms and illnesses.”
“The document’s recommendations are potentially abusive and dangerous for people with severe ME, as it is a
neurological illness, not just a fatigue state.”
“People who are bed-bound are nowhere near ‘activity management’ level. How can any element of CBT or
GET be appropriate for the severely affected? To have severe ME you most probably have between 10 and 20%
functional ability, which is less than 80% functional ability that even Michael Sharpe acknowledges is needed to
engage in activity management.”
“There is an underlying assumption that the illness is controllable and manageable for the severely affected.
This is simply not true as things are.”
“These draft guidelines are absolutely horrific, shocking – I am dismayed. If the recommended approaches are
put in place, it will be a disaster for the ME community. CBT and GET do not work – my son had CBT for 6-9
months; it was an utter waste of time. ME is a biological illness.”
“No progress has been made. The conspiracy continues to give power to psychiatrists and drug companies.”
“If Peter White gives biased, one-sided advice to the DWP on DLA on CFS/ME (and the ME charities say he
does), is he failing in his duty as an expert to give comprehensive, balanced, warts-and-all objective evidence?”
(by reference to an article entitled ‘GP could be struck off after criticism from judge – Expert witness opposed
all child immunisation’ by Clare Dyer, legal editor, Society Guardian, 2.10.2006. – The same position might
exist in cases of ‘expert advice’ or ‘evidence’ given to NICE).
The following are some comments on the Chambers, Bagnall et al Review ‘Interventions for the treatment,
management and rehabilitation of patients with chronic fatigue syndrome / myalgic encephalomyelitis. An
updated systematic review’. (JRSM, Vol.99, October 2006):
Comments after the Summary Conclusions:
“The only worthwhile ‘clinically relevant objective outcome measures’ are: Can the patient be cured; can they
be restored to health and happiness; can they go back to work? CBT and GET don’t begin to approach these
objectives, but Wessely and Sharpe somehow forget to say that.”
Various comments throughout the text of the Review:
“A major American journal, published by the American Medical Association, examined and rejected claims that
CBT and GET are ‘effective’. If they can’t get a patient back to work, they haven’t ‘been proved to be
effective’.”
“The evidence base for GET and CBT is a) small and b) old. No matter how these authors try to spin it, that’s
still the case.”
“If NICE confines itself to RCTs, then effectively it confines itself to research generated by a handful of UK
shrinks. And inevitably its finding will reflect only the thinking of that small group. … Summary: If you feed
rubbish into a NICE systematic review, you get rubbish out.”
“The RCT evidence base for GET consists of only 5 RCTs.” (The review states ‘No severely affected patients
were included in the studies of GET’). “That is to say, NICE recommendations on GET cannot be applied to
severely affected ME patients.”
“All surveys of CFS/ME patients consistently report that a high percentage are made worse by CBT and GET.
Yet the published trials never reported adverse events. How odd.”
“Note no reference in the main findings to high drop out rates or possible adverse events.”
“Of course there is publication bias. See above for their treatment of withdrawal rates. Researchers like Prins
and Wessely know very well that they have high drop out rates. But they take good care not to ask the patients
for reasons, or to publish them.”
“Despite a near total lack of an evidence base for kids, NICE still recommend CBT and GET.”
“Despite a near-total lack of an evidence base for the severely affected, are NICE still going to recommend CBT
and GET for them?”
“Someone has persuaded Chambers and Bagnall to put a positive spin on CBT and GET. They had contact with
‘experts’ (Leonard Jason and Nancy Klimas wouldn’t have been among them). They consistently conceal the
small size of the evidence base. They give misleading information on Deale’s 5-year follow-up. Despite many
admitted flaws in the evidence base, they still make confident recommendations on treatment.”
The above quotations are a small sample of many comments, which have been brought to my notice to date, both in
respect of the NICE draft guidelines and the Chambers, Bagnall et all Review. It is clear that both are characterized
by serious flaws and inadequacies, as was the October 2005 Systematic Review (a critique was sent to NICE early in
2006). The 90-question Questionnaire had similar flaws, inadequacies and ambiguities. There appears to be an
indisputable psychiatric bias in all the documents used or prepared by NICE in this enterprise. Whilst more definite
comments and conclusions must await careful study of the draft guidelines, those involved in compiling these should
realize now that these, as they stand, are likely to be rejected outright and that major changes or even a complete rewrite may be called for. So far all initial comments, including those from the major UK ME/CFS charities, have
been negative. To attempt any implementation of these draft guidelines would be tantamount to implementing
ideology – it certainly would not work with severely affected ME patients. The proposed main management and
treatment approaches (i.e. CBT + GET), have been consistently rejected by patients because of their ineffectiveness
and potential harmfulness. Insistence on their implementation is contrary to the principles laid out in the DoH
booklet ‘The Expert Patient: A New Approach to Chronic Disease Management for the 21 st Century’, 2001.
Doris M Jones MSc
For the 25% ME Group and on behalf of those who have responded so willingly at very short notice.
4.10.2006