Greg Crowhurst posted this to co-cure today
Greg Crowhurst 2nd March 2010 (With special thanks to Clara Valverde)
1. Malcolm Hooper
CBT is based on the idea that somatoform disorders are maintained by
abnormal or unhelpful illness beliefs which lead to abnormal or
unhelpful behaviour. The first requirement for a somatoform diagnosis
is that there be no physical cause for the symptoms. This is not the
case in ME/CFS”
2. Dr William Weir
“Two forms of treatment…are CBT and GET CBT is a psychological
treatment. Its application in what is certainly an organic disorder
is basically irrational....
Its application is counter-intuitive, particularly when one of the
most debilitating and well recognised symptoms of ME/CFS is
post-exertional malaise which can put some patients in bed for days
after relatively trivial exertion”
3. Dr Irving Spurr
I consider that the recommendation of CBT and GET as blanket
treatments of ‘clinically excellent’ first choice is extremely
dangerous to patients.
4. Dr Eleanor Stein
A close read of the literature reveals that none of the core symptoms
of ME/CFS improve with CBT or GET.
5. Dr Byron Hyde
“(Graded exercise therapy) is not therapy – it is simply the
enforcement of an opinion rather than a treatment based upon any
scientific examination of a patient’s pathology and treatment of that
…..Graded exercise programmes may be significantly dangerous to many
of these ME patients”
6. Dr Derek Enlander
“(The GDG) produced a Guideline that recommends CBT and GET as the
prime treatment yet there is in fact published evidence of
contra-indication / potential harm with GET.
7.Dr Bruce Carruthers
It is when a therapy such as CBT begins to interfere with the natural
warning systems, of which both pain and fatigue are a part, that the
increased risks arise. In particular, musculo-skeletal pain and
fatigue have essential function in modulating activity when the body
is in a state of disease as in ME/CFS.
NICE, however, recommends over-riding this essential safety-net, thus
the risk of serious harm is increased in this situation of
simultaneous activity and symptoms denial. This will become a more
serious risk in patients with more severe ME/CFS.
8. Dr Neil Abbot
“There have been only five trials of CBT with a validity score greater
than 10, one of which was negative for the intervention; and only
three RCTs of GET with a validity score greater than 10. …..Until the
limitations of the evidence base for CBT are recognised, there is a
risk that psychological treatments in the NHS will be guided by
research that is not relevant to actual clinical practice and is less
robust than is claimed’.
9. Dr Charles Shepherd
“.In some cases people are now being given little more than a
‘therapist-led’ management assessment followed by an offer of CBT
10. Susanna Agardy
Studies of GET do not ensure that the participants included suffer
from serious symptoms of ME/CFS such as post-exertional malaise and
mostly use loose, fatigue-based criteria, allowing mixed groups of
fatigued participants to be included. ... Recommendations for GET
ignore the risk of harm indicated by other research and the frequent
worsening of symptoms following exercise reported by people with
11. JK Rowbery
There is real concern that not only is CBT (Cognitive Behavioural
Therapy, the other “treatment” provided by the NHS) ineffective, but
that GET is potentially harmful to patients with ME/CFS. It is known
that GET may leave up to 82% of ME/CFS patients who have undertaken it irreversibly house or bed-bound.
12. A Chaudhuri
"Whilst no one would question that physical exercise improves quality
of life both in health and diseases in general, recommending graded
exercise as a specific prescription for complex disorders like
fibromyalgia and CFS is a gross oversimplication of science." - A
Chaudhuri "Missing data and compliance with oversimplification" -
letter to the British Medical Journal by A Chaudhuri, Clinical Senior
Lecturer in Neurology at the University of Glasgow, 1 August 2002,
commenting on the study "..Prescribed exercise in people with
fibromyalgia: parallel group randomised controlled trial...",
Richards SC, Scott DL., published in BMJ 2002 Jul 27;325(7357)
13. Canberra Fibromyalgia and CFS
Graded exercise therapy (GE or GET) - sometimes referred to as "graded
aerobic exercise" (GAE) - is often included as part of a cognitive
behavioural therapy (CBT) program. It is recommended by those who
follow the biopsychosocial model. The fundamental philosophy
underlying this kind of treatment is that deconditioning, depression
and believing one is ill are at the root of CFS.
14. Carruthers et al.
The question arises whether a formal CBT or GET program adds anything
to what is available in the ordinary medical setting. A well informed
physician empowers the patient by respecting their experiences,
counsels the patients in coping strategies, and helps them achieve
optimal exercise and activity levels within their limits in a common
sense, non-ideological manner, which is not tied to deadlines or other
Physicians must take as much care in prescribing appropriate exercise
as in prescribing medications to ME/CFS patients
This excerpt is taken from pages 46-49 of the article "Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case
Definition, Diagnostic and Treatment Protocols" which appeared in the
Journal of Chronic Fatigue Syndrome, Vol. 11(1) 2003, pp. 7-115,
written by Carruthers et al.
15. Frank N.M. Twisk and Michael Maes
ME/CFS is considered to be a rather harmless condition by most
physicians, but patients with ME/CFS are often more functionally
impaired than those suffering from type 2 diabetes, congestive heart
failure, multiple sclerosis, and end-stage renal disease
a) the evidence-based success claim for CBT/GET is unjust, since the
evidence base is lacking and CBT/GET is not significantly more
effective than usual care; and
b) the exertion, and thus GET, can have numerous potential damaging
physical effects on ME/CFS patients.
The (bio)psychosocial model (CBT/GET) has been invalidated by research
A review on cognitive behavorial therapy (CBT) and graded exercise
therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue
syndrome (CFS): CBT/GET is not only ineffective and not
evidence-based, but also potentially harmful for many patients with
Frank N.M. Twisk and Michael Maes
16. Horace Reid
In 2006 Chalder and others claimed that “Cognitive behavioural therapy
and graded exercise therapy have been shown to be effective in
restoring the ability to work in those who are currently absent from
work.” In 2007 NICE demurred: “There is a lack of studies in this
area … More information is needed on functional outcomes such as
return to work or education.” (CG53 p 61)
Santhouse et al. describe CBT and GET as “treatments” for CFS/ME. As
defined by NICE they are much less than that. They are merely
techniques to help patients cope with an intractable and so far
untreatable condition. In the words of NICE: “The GDG did not regard
CBT or other behavioural therapies as curative or directed at the
underlying disease process, which remains unknown. Rather, such
interventions can help some patients cope with the condition"; (CG53 p
Horace Reid http://niceguidelines.blogspot.com/
17. Margaret Williams
Not only did NICE ignore the fact that the recommended interventions (CBT/GET) are not effective, it ignored the evidence that subsuming all states of “chronic fatigue” into one functional somatic syndrome is contra-indicated, as well as evidence that most of the randomised controlled trials (RCTs) on CBT on which the GDG relied are seriously flawed.
In most of the ten trials of CBT upon which the GDG relied, the
methodology does not meet even the most minimally acceptable standards. The trials used give a total of 480 patients out of an alleged UK total of 240,000 patients and is insufficient data upon which to recommend a national strategy.
Patients with pre-existing psychiatric co-morbidity were not excluded from the studies relied upon.
Nowhere is there any evidence that patients fully recovered
The behavioural model of “CFS/ME” offers relatively little; it is
supported only by researchers with a professional interest in
psychosocial aspects of illness. This model dominates the NICE
There is no credible evidence to support the GDG’s claim that the best practice evidence-base is the nationwide implementation of CBT/GET for patients with “CFS/ME”.
Background information and illustrations of evidence that CBT cannot improve ME/CFS which NICE disregarded Margaret Williams 25thJuly 2008
18. ME Research UK
…. the management strategies making up the bulk of the ‘treatments’ on offer by the National Health Service in the UK — “CBT and Graded Exercise” — seem absurd to patients and carers given the problem on the ground.
ME/CFS Research: What do patients want? Why isn’t it happening?
A thorough analysis of the current medical scientific literature and
international patient surveys,..shows that CBT/GET is not only
ineffective for the majority of the ME/CFS patients, but also
potentially very harmful.
Scientific studies and large-scaled patient surveys have shown that
treatments with CBT/GET seriously deteriorate the condition of many patients with ME/CFS.
20. 25% Severe ME Group
ME/CFS is not “cured” by Cognitive Behavioural Therapy (CBT) and
Graded Exercise (GET). CBT and GET are not accepted in the British
Formulary for ME and therefore cannot be considered automatically to be within the legal framework for treatment, especially for the
severely affected (25% Group 2005) CBT and GET are potentially harmful to anyone with neurological ME.
25% Group :25% ME Group Response to the DWP Guidance Document on CFS/ME APRIL 2006
21. Margaret Williams
The UK definition of CBT is contained in the Chief Medical Officer's
Working Group Report of January 2002: "Cognitive behavioural therapy
is a tool for constructively modifying attitude and behaviour".
The UK definition of GET is contained in the NHS Plus National
Guideline on Occupational Aspects of CFS of October 2006: "GET
involves structured activity management that aims for a gradual
increase in aerobic activities".
According to Cheney, aerobic exercise may kill the patient with
(ME)CFS, so patients are rightly wary, because for almost 20 years
Wessely School psychiatrists have claimed that ME does not exist
except as an aberrant belief, and that "CFS" is a psychiatric disorder
in which patients refuse to confront their "faulty illness beliefs"
(ie. that they have a physical, not a mental, illness).
Margaret Williams : Kilmas, Wessely and NICE , Redefining CBT ? Invest
in ME ,http://www.investinme.org/Article-07...ning%20CBT.htm
22. Jodi Bassett
No evidence exists which shows that cognitive behavioural therapy
(CBT) or graded exercise therapy (GET) are appropriate, useful or safe
treatments for Myalgic Encephalomyelitis (M.E.) patients. Studies
involving miscellaneous psychiatric and non-psychiatric ‘fatigue’
sufferers, and their response to these treatments, have no more
relevance to M.E. sufferers than they do to diabetes patients, cancer
patients, patients with multiple sclerosis or any other illness.
Jodi Bassett The effects of CBT and GET on patients with M.E. -
23. Professor Malcolm Hooper
(CBT, GET) :
(i) is not remotely curative;
(ii) modest gains may be transient and even illusory;
(iii) these interventions are not the answer to ME/CFS;
(iv) patients have a tendency to relapse; and
(v) evidence from randomised trials bears no guarantee for treatment
For a detailed review of Wessely School indoctrination of State
agencies, and the impact of this on social and welfare policy, see
Evidence submitted by Professor Malcolm Hooper (NICE 07)
24. Norfolk and Suffolk ME/CFS Service Development
Latest scientific studies find GET and CBT ineffective and harmful
The two therapies which the NHS here in the UK remains committed to
(under the 2007 NICE guidelines) for the clinical treatment of ME/CFS
are Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy
(CBT). NICE recommends CBT/GET as the first line of intervention and
as key therapeutic strategies. Two recent scientific reviews of CBT
and GET by medical research departments in the UK and Europe have
condemned the use of both treatments in light of overwhelming evidence
of the biological abnormalities present in ME/CFS.
A collaborative review by Frank Twisk and Michael Maes from research
centres in the Netherlands and Belgium says: "... we invalidate the
(bio)psychosocial model for ME/CFS and demonstrate that the success
claim for CBT/GET to treat ME/CFS is unjust." They go on to conclude:
"it is unethical to treat patients with ME/CFS with ineffective,
non-evidence-based and potentially harmful “rehabilitation therapies”,
such as CBT/GET."
This evidence brings into question a High Court judgement from the
Judicial Review of the NICE Guidelines in March 2009 where the judge
dismissed allegations that current therapies are harmful to some with
myalgic encephalomyelitis. The latest scientific evidence clearly
supports the defendants, ME sufferers Kevin Short from Norwich, and
Douglas Fraser from London.
The study on Graded Exercise Therapy by Pierce and Pierce (UK/Italy)
concludes that "... it is difficult to conceive of a more inappropriate therapy for ME".
Norfolk and Suffolk ME/CFS Service Development
25. Tom Kinlon
Kinlon ( Do CBT and GET really work for Chronic Fatigue Syndrome?) pointed out that : “Santhouse and colleagues (1) claim that
treatments such as cognitive behavioural therapy (CBT) and graded
exercise therapy (GET) “have been shown to work” in Chronic Fatigue
Syndrome (CFS)/Myalgic Encephalomyelitis (ME).i However, what the
literature actually shows is that such therapies have an effect, which
is not necessarily the same thing as “working”: a meta-analysis
calculated the average Cohen’s d effect size across various CBT and
GET studies to be 0.48, which would generally be described as a small
26. Charles Shepherd
It is disingenuous to claim that the use of CBT and GET “in a group
of patients who cannot normally travel to hospital to access them, is
going to produce a 'dramatic recovery'. A considerable amount of
accumulating patient evidence indicates that a significant proportion
of people with ME/CFS find that the two behavioural treatments being
recommended - cognitive behaviour therapy (CBT) and graded exercise
therapy (GET) - are either ineffective (ie CBT) or harmful (ie GET).
And the only research so far to investigate potential risk factors
which are involved in the development of severe ME/CFS 4) has
concluded that there is no evidence to implicate personality or
Do CBT and GET really work for Chronic Fatigue
27. Northern Irish ME Association
Current NHS recommended treatments for ME are ineffective, and often
have serious side-effects. CBT and GET are unpopular with patients,
and face client resistance. GET has complication rates ranging from
37% - 50%, and should never have been approved for general use in the
NHS. The use of psychotherapy as a first-line treatment perpetuates
the myth that ME is a psychiatric illness.
Northern Irish ME Association http://www.nimea.org/presentation1.html
27a. Kathelijne A Hugaerts
In Belgium, during 5 years, the Belgian Government subsidized 5 “CFS
Reference Centers” who treated patients solely with CBT/GET. They used the Fukuda criteria for selection. Every year, 1.5 million Euro was
distributed to the 5 centers. This makes a total of 7.5 million Euro
during 5 years. 800 patients were treated during this period.
The Belgian Health Care Knowledge Centre (KCE) reviewed the result
after 5 years (2009)( The KCE is a semi-governmental institution which
produces analyses and studies in different research of health topics.
patients feeling better : 6 %
Patients feeling worse : 38 %
Patients with no result, not better nor worse : the remaining 56 %
The ultimate goal of the Reference Centers and their CBT/GET therapy
was not met: NOT ONE PATIENT RESUMED WORK.
This confirms that CBT/GET is ineffectively and possibly harmful.”
The Belgian experiment with CBT and GET
28. Vance Spence
In the context of ME/CFS, cognitive–behavioural approaches are not
evidence-based to a level where they can be claimed to be specific
“treatments” – an unsurprising observation given that this “syndrome”
diagnosis delivers a heterogeneous population widely believed to
contain distinct clinical sub-groups (15). The systematic review
underpinning NICE Guideline 53 found 10 randomized clinical trials on
adults, 3 of these negative with the remainder showing mild to modest
positive, though non- curative, results. Recent overviews have
confirmed this; a recent Cochrane review (16) found 15 studies of CBT
(including controlled clinical trials) for ME/CFS and took a more
cautious view of the evidence and its limitations than the authors of
the BMJ Editorial, as did a second recent review (17). This latter
meta-analysis of 13 clinical trials (representing 1371 patients) found
a very mixed bag of studies and reported an overall effect size that
was small–moderate by usual standards. Not for nothing did NICE
Guideline 53 (Full Guidelines, section 6.3.8, pp 252) state that it
did “not regard CBT or other behavioural therapies as curative or
directed at the underlying disease process”.
Not the Answer to the Biomedical Enigma
29. Theresa L Heath
“I undertook the course of CBT offered by King's College Hospital with
an open mind and a degree of optimism. I finished the course feeling
depressed and like a failure. I now view CBT as akin to other quack
'therapies' such as the Lightening Process. Your recovery is in your
hands. If you don't improve, you're a failure. My therapist seemed
genuinely confused when I did not make any improvement, and in fact
suffered my worst relapse to date whilst endeavouring, against my
better instincts, to adhere to their GET and sleep programme. I
completed the course doing less physical activity than when I had
started, and feeling guilty for my own 'unhelpful illness beliefs'.
CBT and GET taking up valuable funds
30. A.F. Andrew
“The basis of CBT for ME/CFS is fantastic. First, you blame the
patient for his illness, and then when CBT doesn't cure him, you blame
him for not being motivated. When I'm fit and well again, I will use
this same principle when I see a patient with for example, a severe
infection. If the antibiotic I have prescribed, doesn't solve the
problem, then I will blame the patient. That the culture has shown
that I prescribed the wrong treatment, is something I will ignore. “
I Adore CBT http://www.bmj.com/cgi/eletters/340/feb11_1/c738
31. Richard Simpson
To use NICE as an example for promoting the use of CBT and GET is
risible and perverse, yet entirely predictable as biomedical research
was ignored.The fact that 90% percent of ME support groups opposed
NICE, the fact that ME patients took NICE to a judicial review in
protest at their guidelines for ME, the fact that the only support
that NICE could muster from those supposedly supporting the ME
community were from organisations that accept government money and who
themselves organise “psychosocial conferences” on ME – all of this
illustrates the lack of confidence which people with ME and their
families have for NICE. “
Education the Key to http://www.bmj.com/cgi/eletters/340/feb11_1/c738
32. Tanya Harrison
….any recommendation of GET is based on flawed research, and goes
against patient, and research, evidence:
There are multiple research papers showing that people with ME react
adversely to exercise, and that increasing the cardiac rate, in
particular, is extremely dangerous.
...patient evidence has shown that the majority of patients find GET
unhelpful/harmful, with more than one patient survey showing over half
of patients undertaking GET are made worse.
BRAME: Personal Response from Tanya Harrison to NICE guideline on CFS/ME
33. Linda Crowhurst
What is omitted ….is a warning of the very real dangers of imposing
CBT and GET on very frail, vulnerable, ill people for whom exercise is
contra-indicated and who suffer such devastating levels of cognitive
dysfunction, as a result of their disease, that CBT becomes equally as
dangerous as physical exercise. Mental exertion can have an equally
disastrous impact upon the body , leading to an increase in already
severe symptoms and a deterioration that can be permanent and may lead
Patients with severe ME do not want CBT and GET. What they want is
biomedical research, significant biomedical testing and new tests and
treatments available on the NHS. What they need is the psychiatric
interpretation and powerful influence out of ME altogether. It is long
A Dangerous Path to take
34. Clara Valverde RN BSc and Dr Iñaki Markez MD, PhD
"CBT is being used in ME/CFS to forward governments' political and
The proponents of CBT are mistaken when they define the patient with ME/CFS as someone whose way of thinking has to be changed. The sociological literature shows that people who have his illness, more than those with any other chronic illnesses , use, within their enormous
limitations, their meagre energy to help others who are in the same
situation as themselves.
Despite of being mostly housebound, these patients dedicate their few
able moments to support and encourage on, especially through internet,
other patients with ME/CFS, and to share useful information for their
self-care. They also work to try to improve the limited services
provided for this illness.
Not only is that a lesson in generosity for society, also all the
knowledge on how to live with this new and difficult illness, which is on the increase, it is a great richness for all which this society cannot afford to waste".
35. Mary ann Spurgin, Ph.D.
According to this thesis, some 2 million people across the country, people whom the book (A Review of Mark Demitrack's and Susan Abbey's Chronic Fatigue Syndrome: An Integrative Approach) theorizes were often of above-average intelligence before they got sick, developed a viral infection or some other bodily stressor and then, suddenly, their interpretation became skewed. Suddenly they began imagining that their symptoms continued beyond the acute, infectious stage and that those symptoms were severe. Such "attributions" and "cognitions" perpetuate the illness, as does the "attributional bias" of the physicians who take them seriously. The cure, according to the book, is Cognitive Behavioral Therapy, which
alters the faulty cognitions and leads to new behaviors such as exercise. Exercise, according to the book, restores the patient to normal. Elegant prose and cool, clinical language provide the book with an aura of scientific objectivity. Careful examination, however, reveals the book to contain more value-laden rhetoric than logic, more religion than science.
Critical Analysis of the CBT/GET Model www.cfids-cab.org/MESA/
36. Drs. M.P. Koolhaas, H. de Boorder, Prof. dr. E. van Hoof
A recent pilot study (Koolhaas, et al., 2008, Netherlands) reports that only 2% of ME/CFS patients are cured by CBT, while the greatest share (38%) are adversely affected - most reporting substantial deterioration. It is especially notable that employment and education are negatively affected. This is in sharp contrast to the claims of psychiatrists and the Dutch Health Council that 70% of patients improve. Previous studies have also ignored or denied the negative affects of CBT on ME/CFS patients. The pilot study, recently published in the Dutch Medical Magazine, Medisch Contact, concludes that the previously reported claims of 70% improvement in ME/CFS patients receiving CBT are vastly overstated and misleading.
Drs. M.P. Koolhaas, H. de Boorder, prof. dr. E. van Hoof
Date: February 2008
ISBN: 978-90-812658-1-2 Cognitieve gedragstherapie bij het chronische
vermoeidheidssyndroom (ME/CVS) vanuit het perspectief van de patiënt
37. Frank N.M. Twisk and Michael Maes
"In this review we invalidate the (bio)psychosocial model for ME/CFS and demonstrate that the success claim for CBT/GET to treat ME/CFS is unjust. CBT/GET is not only hardly more effective than non-interventions or standard medical care, but many patients report that the therapy had affected them adversely, the majority of them even reporting substantial deterioration. Moreover, this review shows that exertion and thus GET most likely have a negative impact on many ME/CFS patients."
Neuroendocrinol Lett 2009;30(3): 284–299 .A review on cognitive
behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic
encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is
not only ineffective and not evidence-based, but also potentially
harmful for many patients with ME/CFS. NEL300309R02 ©2009
Neuroendocrinology Letters • www.nel.edu
38. Paul Moloney
The supposedly sound evidence base for the effectiveness of the psychological therapies may be far more questionable than is widely supposed.
The trouble with psychotherapy CoCure Monday, February 25, 2008
Clinical Psychology Forum 162 - June 2006
39. Boudewijn Van Houdenhove and Patrick Luyten
In this issue of Patient Education and Counseling, two interesting
papers challenge current evidence-based treatments of chronic fatigue
syndrome (CFS). In the first study Goudsmit et al.  show that a
brief multi-component programme aimed at helping CFS patients cope
with their illness, may be as effective as cognitive behavior therapy
(CBT). In the second study Jason et al.  demonstrate that CFS
patients who carefully stayed within their 'energy envelope'
(measured by a self-monitoring strategy) did better than patients who
were less successful in keeping expended energy close to available
energy – a finding that challenges basic assumptions of graded
exercise therapy (GET)
 Goudsmit EM, Ho-Yen Do, Dancey CP. Learning to cope with chronic
illness. Efficacy of a multi-component treatment for people with
chronic fatigue syndrome. Patient Educ. Couns. 2009;
 Jason L, Benton M, Torres-Harding S, Muldowney K. The impact of
energy modulation on physical functioning and fatigue severity among
patients with ME/CFS. Patient Educ. Couns. 2009; doi:10.1016/j.pec.2009.02.015.
Treatment of chronic fatigue syndrome: How to find a 'new equilibrium'?
Journal: Patient Educ Couns. 2009 Sep 19
40. Malcolm Hooper
Despite the vast amount of biomedical literature (some 5000 papers) =
going back to 1934 and the classification of ME as a neurological illness by the WHO (ICD-10 G93.3) since 1969, the official UK attitudes as demonstrated by the MRC, DWP, Department of Health, and to some extent your own organisation NICE: ignore all this evidence, show an ideological commitment to a psychosomatic/behavioural model of the illness which is no longer tenable recommend only cognitive restructuring techniques (CBT and GET) that are not remotely curative and have been shown to be of no lasting value and in the case of GET to be positively harmful (Peter White's assertion that this is because the interventions have been incorrectly administered has been shown to lack credibility)
From Professor Malcolm Hooper to Sir Michael Rawlings 19 February 2010
41. Simon Lawrence
I am also extremely worried where this (25% ME Group Response to the
ruling concerning the NICE Judicial Review into ME/CFS Guidelines)
will lead in relation to the so called treatment therapies of
Cognitive Behavioural Therapy and Graded Exercise Therapy. These
treatments in many cases have caused wide spread problems for ME
sufferers. Our Report from 2004 http://tinyurl.com/25megroupanalysis
see last page) reported serious flaws in the therapies and also the
fact that many were not helped and a great deal more were harmed by
undertaking these programs. Many of these sufferers were not even
severely affected patients before undertaking the therapies!
We have previously quoted that these therapies are flawed when the
NICE Guidelines were released: “Patient experience of this serious
neurological illness, which affects up to 240,000 people in the UK has
been all but ignored in favour of a psychological approach. The
illness affects many body systems and their functions, and an
estimated 60,000 develop M.E. so severely they become bed or house
bound, with others needing to be tube fed”.
13 March 2009
42. ME Association
The legal challenge to the NICE Guideline on ME/CFS was lost in the
High Court today – when it was dismissed by Mr Justice Simon. More
details later. Please find The ME Association’s immediate response
People with ME/CFS now face a situation where doctors will continue to
recommend two forms of treatments that many people with the illness
find ineffective or even harmful.
The ME Association is disappointed that the High Court Judicial Review
of the NICE Guideline on ME/CFS found in favour of NICE.
Recommendations that two controversial treatments – cognitive
behaviour therapy (CBT) and graded exercise treatment (GET) – be
offered as front-line treatments for those with mild to moderate forms
of the illness remain unchanged.
This is despite the findings of the largest-ever survey of ME patient
opinion carried out by The ME Association last year which found that
only 26% were helped by CBT – while 56% reported that GET made them
The ME Association believe that the two people with ME who took up the legal challenge were fully justified in seeking a court hearing into
the processes used by NICE to draw up the Guideline.
Despite the Judicial Review failing to result in withdrawal of these
potentially dangerous guidelines, The ME Association maintains that
the evidence relating to both clinical and cost effectiveness does not
justify the emphasis and optimism being given to these two treatments.
NICE’s recommendations cannot be justified by the evidence.
43. Professor Malcolm Hooper
Referring to (ME)CFS and fibromyalgia as somatoform disorders, and
citing an article by Wessely et al, a 2005 paper from Norway
(Biological sensitisation and psychological amplification: Gateways to
subjective health complaints and somatoform disorders. Ingvard
Wilhelmsen. Psychoneuroendocrinology 2005:30:990‐995) fuelled the
“CFS/ME is a somatoform disorder” controversy:
“What messages do we want to convey to the public?
I will propose three slogans:
1. Do not listen to your body’s signals! In other words, don’t amplify.
2. Do not trust your feelings!
3. Do not trust your thoughts!
“This is the central theme of CBT. It is an important message to the
public that subjective health complaints are common and seldom an
indicator of serious disease. Cognitive, emotional and behavioural
factors have the capacity to relieve symptoms and even change the
brain. These facts should be highlighted in our message to the
Such a message could prove fatal for some ME/CFS sufferers.
It runs directly counter to the advice given fifteen years earlier by
Dr Darrel Ho‐Yen about CBT/GET: “It has been suggested that a new
approach to the treatment of patients with postviral fatigue syndrome
would be the adoption of a cognitive behavioural model (Wessely S,
David A, Butler S, Chalder T: Management of chronic (postviral)
fatigue syndrome. JRCGP 1989:39:26‐29). Those who are chronically ill
have recognised the folly of the approach and, far from being
maladaptive, their behaviour shows that they have insight into their
illness” (JRCGP 1990:40:37‐39).
Magical Medicine http://www.meactionuk.org.uk/magical-medicine.htm
43. Professor Malcolm Hooper
“A CBT model of CFS/ME”
The Trial Manual for Participants who were allocated to the cognitive
behavioural therapy (CBT) arm of the (PACE) trial refers to a “CBT
model of understanding CFS/ME” which in the next line has become a
“CBT model of CFS/ME”.
There is no “CBT model of understanding” in respect of understanding
any disorder: people either understand something or they do not.
How offensive it would be if psychiatrists talked about a “CBT model
of understanding” HIV/AIDS, or a “CBT model of understanding” breast
cancer, or a “CBT model of understanding” multiple sclerosis, or
diabetes (which seems to be already happening – see above).
Medical knowledge does not rely on a “CBT model of understanding” a
disease but relies on the science of medicine. To impose such a false
doctrine upon patients with ME/CFS seems tantamount to psychological
abuse of defenceless sick people.
Magical Medicine http://www.meactionuk.org.uk/magical-medicine.htm
44. Professor Malcolm Hooper
Sharpe describes the “cognitivemodel of CFS/ME” as follows:“A
cognitive model of CFS ,based on systematic observation of over 100
patients meeting criteria for CFS, has been proposed.
The model as a whole attempts to explain how early life experiences
lead to the formation of assumptions that, combined with certain life
stressors, may precipitate CFS in predisposed individuals.
The model then attempts to explain how cognitive , behavioural,
biological and social factors interact in a vicious circle to
perpetuate or maintain the illness. According to this model, the
interpretation of symptoms predominantly in terms of physical illness,
and not in terms of negative emotional states, plays a particularly
important role in the maintenance of the disorder."
To base a theoretical model on around 100 patients, whilst
subsequently ignoring the extensive biomedical evidence obtained on
over 20 2000 patients showing on going viral activity and a disrupted
immune system as perpetuating factors in ME/CFS, thereby wasting
millions of pounds sterling trying to prove the validity of their
non-existentCFS/ME” model, is something for which many people believe
the Wessely School ought to be held to account.
Magical Medicine http://www.meactionuk.org.uk/magical-medicine.htm
45. M.P. Koolhaas
This pilot study, based on subjective experiences of ME/CFS sufferers,
does not confirm the high success rates regularly claimed by research
into the effectiveness of CBT for ME/CFS.
Overall, CBT for ME/CFS does not improve patients’ well-being: More
patients report deterioration of their condition rather than
Our conclusion is that the claims in scientific publications about the
effectiveness of this therapy, based on trials in strictly controlled
settings within universities, has been overstated and are therefore
misleading. The findings of a subgroup analysis also contradict
reported findings from research in strictly regulated settings.
[Cognitive behavior therapy for chronic fatigue syndrome from the
patient’s perspective] [Article in Dutch]- Source: Medisch Contact,
Feb 2008 Source: Medisch Contact, February 2008, ISBN:
978-90-812658-1-2, by Koolhaas MP, de Boorder H, van Hoof E. The
46. Paul Cheney
“The most important thing about exercise is not to have (patients
with ME / CFS) do aerobic exercise. I believe that even progressive
aerobic exercise is counter-productive. If you have a defect in
mitochondrial function and you push the mitochondria by exercise, you
kill the DNA”"
Cheney P (1999) Lecture given in Orlando, Florida at the International
Congress of Bioenergetic Medicine, 5th-7th February 1999
47. E van de Sande
It takes the ME sufferer an inordinate amount of time to recover from exercise.
E van de Sande M.(2003) ME/CFS Post-Exertional Malaise / Fatigue and Exercise http://www.mefmaction.net/default.as...rticlesmedical
Quest #60, June/July, 2003
48. Charles Shepherd
As much care should be taken in prescribing exercise as in prescribing
pharmaceuticals. ME/CFS patients do not respond to exercise in a manner that is expected of healthy people.
Sheperd C. (2001) Pacing and exercise in chronic fatigue syndrome.
Physiotherapy 2001 Aug;87(8):395-396.
49. Severe ME patient
A sufferer recounts the often horrifying impact of this “treatment”
regime on those with severe ME:
“All of my ‘help’ is useless:
I am offered anti-depressants (I am not depressed).
I am offered ‘Behavioural Therapy’ (I have no incorrect illness beliefs).
I am offered ‘Graded Exercise’ (Which even in small moderation, relapses me).
EVEN WHEN I DO THESE ALL AGAINST MY WILL. As an inpatient in Hospital, my medical records are falsified, and it claims I am ‘obstructive’ to my own recovery, as these psychosomatic principles have no effect on me. This is then claimed to be MY fault, not the fact that I am not
mentally ill, and therefore do not ‘recover’ from M.E via mental
50. 25% Group
In a 2004 survey, members of the 25 % Group found:
* Cognitive behavioural therapy (93% unhelpful) and psychotherapy
* Worsening of condition with graded exercise therapy (tried by
39% of members, and 82% made worse by it)
These results are confirmed by this latest survey in which only one
person who had tried CBT and GET reported that it was helpful.
51. Greg Crowhurst
According to Loveless the ME/CFS patients whom he saw
had far lower scores on the Karnofsky performance scale than HIV
patients even in the last week of their life, indicating a probable
functional ability of between 10 and 20 % of normal. This figure is
highly significant for as Ho-Yen (1994) states, a patient “with
(ME/CFS) should be advised not to increase their activities gradually
until they feel 80% of normal".
52. Severe ME patient
“I was an in-patient in a psychiatric ward of a London hospital. I was
the only patient who did not have a mental health problem, and
although my CBT therapist had had plenty of experience of working with
M.E. patients, I was the first to be admitted as an in-patient. I only
saw my therapist once a week, and the psychiatric nurses had no
understanding of my illness at all. There was a huge amount of stress,
and I was treated very badly by some of them. I received both CBT and
GET, but the graded exercise seemed to be given priority. I worked
with a physiotherapist, who also had no experience of M.E. I began to
seriously deteriorate, and 4 months in, suffered a major relapse. I
had a kind of undiagnosed 'stroke', collapsed, and became incapable of
looking after myself.
When I went to the hospital I could walk 100 yd., feed, wash and dress
myself. When I left I could not weight bear at all, had no leg muscles
to speak of, and needed two people to transfer me on and off the
toilet and in and out of bed. I had little use of my hands and was
totally bed bound. I could not tolerate sitting upright against the
pillows, conversation was beyond me, and I could barely manage to feed
myself by picking up food in my hands -- cutlery was out of the
question. Nine years later I have improved, but I'm still bed bound”.
53. Severe ME patient
Giving GET and CBT to people with ME is like trying to prescribe
treatment without first investigating the disease – madness! We need
proper biomedical research to find out the cause(s) of this illness
and to investigate fully what it does to the body. GET and CBT have
been found to be at best unhelpful to those with ME at worse, harmful.
54. Severe ME patient
After I came home from the hospital where I received CBT/GET therapy,
a physio came to see me once a week. The first one was absolutely
appalling, and used to drag me up off the bed and hold me upright,
even though I was too ill to cope with this, and my body was
collapsing under me. It was a 'fight' really, with her believing that
if I wasn't allowed to sit down, the muscles in my legs would improve,
and I would gradually begin to weight-bear.
55. Severe ME patient
“I have been ill in different phases for 15 years. I have worked it
out for myself that you can only “exercise” within very narrow limits.
It is simply not the case that you can exercise your way out of this
illness. If it were that simple most people with ME who were
previously very fit and active, would have long since recovered.”
56. Severe ME patient
Another sufferer describes how, despite an “extensive psychiatric
evaluation” which resulted in a report saying ‘she is severely
physically disabled’, ‘has no mood or behavioural problems’ and ‘is
coping remarkably well given very difficult circumstances’, she was
still offered “CBT and counselling and my symptoms of severe nerve
pain, nausea, difficulties with speaking, sight, swallowing and
eating, seizure like brain activity, intermittent paralysis,
contractures in hands and feet etc were left un-investigated and
57. Severe ME patient
This sufferer states how: “I could see the sense in graded exercise
and how it could help someone to comeback from an illness and aid in
their recovery but unfortunately with ME this treatment does not work
and just sets you back”.
58. Severe ME patient
I participated in Graded Exercise therapy via the ‘National M.E
Centre’, Romford, Essex.
This lead to a relapse, at home, and made me unable to sit upright for
1 year due to pressure in my head, and chest pain. I then relapsed and
ended up in my local NHS Hospital in a cardiac care unit.
59. 25% Group
44% of respondents were offered Graded Exercise Therapy:
Of the 44% who were offered GET 64% tried it and 95% reported that GET had a negative impact on them:
67% of respondents were offered Cognitive Behaviour Therapy:
Of the 67% who were offered CBT 42% tried it and 96% reported that CBT had a negative impact on them: The one sufferer who found GET and CBT helpful, heavily qualified their supporting statement:
This (CBT & GET) had a positive effect in that it helped me develop
coping strategies to deal with the day to day problems of ME. In no
way was it put forward as a cure & I have never had the impression the
therapist very firmly believes I have a genuine physical illness.
60. Severe ME patient
Please, please, please start funding research into the physical side
of the illness instead of flogging a dead horse by continuing to
research CBT and GET. The evidence is already there that CBT and GET
don’t work but there are research projects around that look very
promising and they badly need funding.
61. Malcolm Hooper
It (Action for ME) reported a survey of >2000 people and some analysis
of their data. 25% were housebound, 75% had lost their jobs, 77% had
very much reduced social contacts and 92% were not helped by GET.
Gibson Inquiry - Day 1, April 18th 2006 - Group
62. Malcolm Hooper
Beth Llewelyn gave a very moving account of her own illness and the
commonly experienced failures of the medical and benefits system.
* Her GP refused to follow up the many medical reports associated
with her illness, which was not recognised.
* The family had been accused of all sorts of things because she
did not get better.
* 62% of GPs in Wales do not believe in ME.
* She collapsed on the second day of GET.
Gibson Inquiry - Day 1, April 18th 2006 - Group
63. Greg Crowhurst
The number of patients who actually benefit from CBT and GET (Graded
Exercise Therapy) in trials, is less than 10% and a large number of
patients get significantly worse . If anyone benefited from one of
these trials they probably had some form of Chronic fatigue, but they
did not have ME . In reality virtually no research has been carried
out on those who are most severely affected by ME.
What few trials there have been, tend not to deal with the house and
bed-bound. As Neil Abbot (2004) points out: "very few studies exist,
and all define "severe illness" in different ways, complicating
interpretation of the findings. And specific laboratory-based or
experimental studies on severe sufferers are as rare as hens' teeth."
. The relevance of the psychiatric approach to the severely
affected, now being rolled-out as a nationwide programme, is based on
only one report in the scientific literature, , and that involved
two wheelchair-bound participants who were actually able to attend a
clinic in the first place.
1. Text of speech by Alex Furguson to the Scottish Parliament June 9 2005
3. Abbot N (2004)
Severely Overlooked by Science — An Overview of Research on
Severely-ill People with ME, MERGE
Issues related to severe ME and the involvement of the UK Psychiatric
64. Lajla Marks
The difference between pacing and Graded Exercise Therapy is well
described by the pacing expert Ellen Goudsmit C. Psychol. AFBPsS, UK:
"GET as understood by psychologists and doctors would encourage
patients to keep to the plan. ....... Some therapists see the
deterioration and allow patients to stop and rest. ...... But that's
not standard GET and not mentioned in any publication I ever read.
It's certainly not in the trials cited in the draft [NICE
Guidelines]). The idea is to plod on and complete the plan.. As
discussed, Stulemeijer kicked out all those who could not keep the
plan. Prins et al excluded those they felt might not be able to stick
to the plan at the intake. Wessely allowed patients to reduce but not
stop ...... If people can stop when they begin to feel unwell, it's
pacing. It's the patient listening to their body. That's anathema in
the CBT lit on CFS. ....
Pacing is about hour-to-hour management. There's no agreeing plans
a forthnight earlier. It requires mores self-discipline than GET or
GA. It's an easy principle but not an easy option."
65. Countess of Marr
“During the Committee Stage of the Welfare Reform Bill – debates from
Clause 9 onwards in the Lords, I managed to extract from the Minister
statements to the effect that people with CFS/ME would not be forced
to do CBT/GET in order to continue to get their benefits”.
That debate is recorded in Hansard (Lords) on 28th February 2007, column GC198:
Countess of Mar: "If a group of people refuses graded exercise and
cognitive behaviour therapy, on the basis either that they are afraid
or that they know it will not help them, will they be penalised?"
Lord McKenzie of Luton (Parliamentary Under-Secretary, Department for
Work and Pensions; Labour Peer): "there is no requirement for
individuals to carry out any specific type of activity or treatment.
That cannot be sanctioned".
66. The Grace Charity for ME
SAYING NO CAN BE POSITIVE
Those who wish to refuse psychological therapies for M.E. can be
supported by the following facts:-
1) The law protects patients from unwanted treatments
Medical practitioners cannot give a treatment to a patient without the
2) Private Health Insurers cannot force an M.E. client to undergo
unwanted treatment before making a payment, unless those treatments
are specified in the contract
Unless the contract of a company states clearly that M.E. clients must
undergo CBT and/or graded exercise before a payment is made, the
company could well be in breach of contract. Also, every individual
has freedom to express views as stated by The Human Rights Act 1998.
If an insurance company ignores a client’s reasons for refusing CBT
and/or graded exercise, a client could claim their ‘freedom of
expression’ has been violated [i].
3) An M.E. patient cannot have their state benefits withdrawn for
refusing CBT and graded exercise.
U.K. law says that if a patient refuses suitable treatment without
good cause, benefits can be withdrawn [ii]. However, CBT and graded
exercise could be argued as unsuitable treatments for M.E. sufferers
(see facts below).
4) M.E. is a neurological disorder
It has been classified as such by the World Health Organisation in the
International Classification of Diseases since 1969 [iii]. Therefore
psychological therapies could well be inappropriate.
5) M.E. has a strong medical history of being an organic disease
Dr.Gordon Parish is the curator of the Ramsey Archive, which is
possibly the world’s largest collection of medical papers on M.E.
[iv]. It includes detailed world-wide epidemics of M.E. since 1934 and
the viruses which triggered the disease.
6) Many tests exist in aiding a diagnosis for M.E. Therefore, using
psychological therapies for ‘unexplained fatigue’ is inappropriate
Although diagnostic tests for M.E. are still being worked upon with
promise, nevertheless many tests and procedures can be administered in
aiding a diagnosis of M.E. These include the use of SPECT, MRI and PET
scans, test for NK cell activity and endocrine abnormalities, Tilt
Table Test, viral tests and many more [v]. Although these tests aren’t
always offered by the NHS for M.E., they have nevertheless shown
evidence of physical abnormalities.
7) “Patients who improve after physical exercise programmes do not
have M.E./CFS.,” says Dr. Byron Hyde, M.D. of the Nightingale Research Foundation for M.E. in Canada, who has studied M.E. since 1984 [vi]. Dr. Hyde stresses that M.E. is primarily a disease of the Central Nervous
8) Patients who respond well to CBT and graded exercise might not have
M.E. due to the diverse criteria used. Some criteria focus on
unexplained chronic fatigue only, omitting symptoms showing central
nervous system involvement.
There are at least ten definitions of Chronic Fatigue Syndrome [viii].
In the U.K., a frequently used case definition is the Oxford Criteria
which includes patients with no physical signs and selects subgroups
of patients with high levels of psychiatric diagnoses .[ix] The PACE
and FINE trials use the Oxford Criteria. [x]
9) The assumption that an M.E. patient can always do more is an
erroneous one There are overwhelming international research findings
on M.E., which support multi-system involvement particularly of the
immune, endocrine, cardiovascular and neurological systems. [xi]
Also, there is evidence indicating pathology of the central nervous
system and immune system [xii] and evidence of metabolic dysfunction
in the exercising muscle. [xiii] Also, Dr. Jay Goldstein has demonstrated through SPECT scans the severely decreased brain perfusion of an M.E. patient 24 hours after physical exercise. [xiv]
The Canadian Criteria (2003) states that the worsening of symptoms
after exertion is a principal symptom of M.E. [xv] Raised levels of
noxious by-products of abnormal cell membrane metabolism, associated
with exercise and correlating with patients’ symptoms have been
10) CBT and Graded Exercise can worsen M.E. symptoms In a survey of 3074 M.E./CFS patients conducted between 1998 – 2001, 55% of patients said that CBT had made no difference to their illness, whilst 22% said CBT had made their illness worse. 16% of patients said
that Graded Exercise had made no difference to their illness whilst
48% said it had made their illness worse [xvii]
A survey by the 25% ME Group (for severe sufferers) of 437 patients,
demonstrated that of the 39% of group members who had used graded
exercise, 95% had found this therapy unhelpful, whilst – 82% reported their condition had been made worse by graded exercise.
Some patients were not severely ill with M.E. until after graded
In the same survey – 93% of those who had undergone Cognitive Behavioural Therapy had found it unhelpful [xviii]
See also the ME Conference 2006 DVD.
11) The CMO’s Report recommended CBT and graded exercise despite the objection of two patient support groups.
The patient support groups of BRAME (Blue Ribbon for the Awareness of
ME) and the 25% ME Group refused to endorse the CMO’s Report of 2002
based on its recommended treatments of CBT and graded exercise. These support groups mainly represent the needs of severe M.E. sufferers and were part of the CMO’s Working Group.
12) Medical Concerns have been raised about the CMO’s Report
The Journal of Chronic Fatigue Syndrome, [xix] mentions criticism by
health professionals and the public of both the British and the
Australian M.E./CFS guidelines.
“These criticisms included claims of bias in the recommendations
toward a psychiatric outcome and failure to understand the limitations
of patients to perform exercise programs as well as many others.”
1 The Human Rights Act 1998, European Convention for the Protection of Human Rights and Fundamental Freedoms, Section 1, Article 10, no.1
2 U.K. law on state benefits, Regulation 18 Social Security
(Incapacity For Work) Regulations. A similar law applies to other
state benefits for sickness and disability.
3 World Health Organisation - International Classification of Diseases 10-G93.3
4 What is ME? What is CFS? Information For Clinicians and Lawyers,
Dec. 2001, Marshall, Williams, Hooper, page 11. Available from Prof.
Malcolm Hooper, Dept.of Life Sciences, University of Sunderland SR2
5 Leaflet A Physician’s Guide to Myalgic Encephalomyelitis Chronic
Fatigue Syndrome, The Nightingale Research Foundation, Vol.1, Issue 7,
revised, 1992, page 17. Also, Journal of Chronic Fatigue Syndrome Vol
. II, No.1, 2003, Canadian Criteria, page 25, The Haworth Press Inc.
6 Ibid., A Physician’s Guide to Myalgic Encephalomyelitis Chronic
Fatigue Syndrome, page 25
7 Clinical Observations of Central Nervous System Dysfunction in
Post-Infectious, Acute Onset M.E./CFS, page 38, The Clinical and
Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome
1992, Byron Marshall Hyde, M.D., The Nightingale Research Foundation.
8 Report from the National Task Force on Chronic Fatigue Syndrome,
Westcare, Bristol 1994. This states nine definitions: the recent
Canadian definition in 2003 makes ten.
9 Katon & Russo, 1992; Freiberg, 1999, Unhelpful Counsel? MERGE’s
response to the CMO report on CFS/ME, 2002, p15.
10 See the website of the Medical Research Council at www.mrc.ac.uk
11 ME and/or CFS paper, September 2001, page 1, V.A. Spence PhD,
Chairman of MERGE ( ME Research Group for Education and Support). This
paper quotes from several published findings. Available from MERGE,
The Gateway, North Methven Street, Perth PH1 5PP
12 The Biology of the Chronic Fatigue Syndrome, Prof. Anthony
Komaroff, The American Journal of Medicine 2000: 108: 99-105.
13 Mitochrondrial abnormalities in the postviral fatigue syndrome,
Behan, W.M.H. et al., Acta Neuropathologica 83, 1991, pages 61-65.
14 The Negative Effects of Exercise on an M.E./CFS Dysfunctional
Brain, page vii, The Clinical and Scientific Basis of Myalgic
Encephalomyelitis Chronic Fatigue Syndrome 1992, Byron Marshall Hyde,
M.D., The Nightingale Research Foundation.
15 Journal of Chronic Fatigue Syndrome Vol. 11, No.1, 2003, Canadian
Criteria, page 22, The Haworth Press Inc.
16 Oxidative stress levels are raised in Chronic Fatigue Syndrome and
are associated with clinical symptoms, Kennedy, Spence, Belch, Free
Radical Biology & Medicine 2005:39:584-589
17 Directly from the Horses’ Mouths, Doris M. Jones MSc, Reference
Group Member, CMO’s Working Group. This survey was part of the Working Group on ME/CFS set up by the Chief Medical Officer Sir Kenneth Calman in 1998.
18 Analysis Report by 25% ME Group March 2004 www.25megroup.org
19 see footnote 15, page 2 of the Editorial .
‘Saying No Can Be Positive’ has been produced by The Grace Charity for M.E. http://www.thegracecharityforme.org/documents.asp
The Sussex CFS referral criteria consists of the presence of
unexplained fatigue, and gives emphasis to “illness beliefs”, and so
does not even identify the hallmarks of Neurological/Immunological ME
G93.3, but instead identifies chronic fatigue, a common symptom of a
wide range of conditions including many psychiatric disorders. In the
ICD Chronic Fatigue is listed as a completely different disorder to
ME, CF is in ICD F48 Neurasthenia, in the psychiatric section.
The Sussex referral criteria also requires that the patient agrees to
have a Biopsychosocial and management assessment, and then offers
“management” with CBT and GET which does not have the evidence base to justify such expenditure of millions and 11 wasted years since the CMO’s Working Group was convened in 1998, not to mention wasted lives of patients with Neurological, Immunological ME....
Selected Emails/Letters to Dr Turner for May 5 Deadline
68. North London
... Re. the APPG on ME Inquiry into NHS Services, will you be asking
the CNCC at Barts London for evidence?
Please note (1) the patients' leaflet is entitled 'The Chronic Fatigue
Service' (2) the Referral Criteria says, 'A primary complaint of
unexplained fatigue' (3) the unit offers GET and CBT .
Is this consistent with the illness described by WHO ICD G93.3 (which
the APPG recognises) and Canadian Criteria?
Selected Emails/Letters to Dr Turner for May 5 Deadline
69. ME Research UK
Indeed, when Clinical Guideline 53 is placed side by side with other
Clinical Guidelines in the NICE pantheon, representing 19 different
clinical conditions (see the table in “The NICE Guideline: what's the
problem?” in the Spring 2008 issue of Breakthrough, pdf 53 KB), it can
be seen that while CBT is postulated to be a main intervention for a
range of psychological conditions, ME/CFS is the only physical
condition in this list for which the therapy is flagged up as a
primary specialist management approach in a NICE guideline. This is a
rum business, particularly since Clinical Guideline 53 (full version,
page 252) is clear in stating: “The [Guideline Development Group] did
not regard CBT or other behavioural therapies as curative or directed
at the underlying disease process, which remains unknown. Rather, such
interventions can help some patients cope with the condition and
experience improved functioning, and consequently a improved quality
The NICE Clinical Guideline: from content to clinic
70. Margaret Williams
In contrast to Cleare's assertions about the “favourable evidence” for
the “long-term benefit” of CBT international attempts in Australia
and America to replicate the claimed success of the Wessely School
psychiatrists for those with ME/CFS have not been successful.
By analogy, is Cleare claiming that the physical symptoms of multiple
sclerosis can also be reversed by psychiatrically “corrected”
cognition processes and exercise?
Does Cleare believe that the established laboratory abnormalities seen
in ME/CFS are simply inconsequential epiphenomena? Is he confident
that in terms of restoring ME/CFS patients to asymptomatic pre-morbid
levels of functioning, CBT/GET can restore damaged mitochondria; that
CBT/GET can address the confirmed (published) vascular abnormalities
- specifically the blood vessel sensitivity to acetylcholine which
affects only those with ME/CFS and not other groups (such as Gulf War
Syndrome and those with Organophosphate-exposed illness) who are
equally disabled and who fulfil criteria for chronic fatigue syndrome;
that CBT/GET can restore a leaky gut and a non-intact blood brain
barrier; that CBT/GET can prevent the prominent immune derangements
seen in ME/CFS such as humoral autoimmunity against polypeptides of
the nuclear envelope (the occurrence of autoantibodies to an
intracellular protein like lamin β1 provides laboratory evidence for
an autoimmune component in ME/CFS ); that CBT/GET can modulate
increased neutrophil apoptosis; that CBT/GET can restore maximum
oxygen delivery and optimum lung function tests; that CBT/GET can
restore an increased CD4-CD8 ratio; that CBT/GET can restore an
up-regulated antiviral pathway and that CBT/GET can reverse recurrent
pancreatitis, cardiomyopathy and hair loss and that it can control
vertigo and observable nystagmus, double vision, nausea, bladder and
bowel dysfunction, neuromuscular incoordination and intractable pain,
all of which may occur in ME/CFS?
Dysfunctional Beliefs In ME/CFS?
71. Jeannie Carson
Mill Crescent resident Jeannie Carson suffers from ME, and has
criticised the NHS's view of the illness which looks at it as a
psychiatric condition, with treatment including cognitive behavioural
The former Pembury Hospital midwife feels the healthcare system is
wrong for labelling it in this way, and says it should be treated as a
The 67-year-old spends most of the day bed-bound and as well as the
overwhelming tiredness, she suffers muscular pain, difficulty walking,
and feelings of isolation and loneliness. She has shunned her treatment through psychiatric methods and now gets by with the help of a carer.
"I was very active, I didn't want this ME," she said.
"There are times when I get angry and frustrated because I am unable
to be as active as I want to be.
I feel they are being unfair.
"How dare they say it is a psychological illness? I did not ask for this."
Miss Carson is a member of The Grace Charity for ME which sends
treatment guidelines to all surgeries in Kent and Medway.
'NHS must not treat ME as a mental illness'
72. Mary M. Schweitzer, Ph.D.
Kings College, London, follows the theory that patients with CFS hold "inappropriate illness beliefs," and they have to re-learn that (1) they are well, through cognitive behaviour therapy (CBT), and (2) they can be reconditioned, through graded exercise therapy (GET) - and then they can happily go back to work and family.
These theories have sent children and even adults to foster care or psychiatric hospitals for the sin of having "chronic fatigue syndrome."
Simon Wessely: Pay Attention GIGO ...
Pay Attention To The Data Set
73. Maryann Spurgin, Ph.D.
In 1994, a group of government propagandists and psychiatrists on the
take from insurance companies created one of the most damaging
documents in the fifty-year history of ME/CFS: the 1994 Centers for
Disease Control Case Definition. Hillary Johnson was one of the first
harshly to criticize the document in her book Osler’s Web, stating
that the criteria were too broad and failed to describe the disease
with which she and so many of us had been stricken, the disease that
caused post-exertional sickness and neurological problems. Instead, it
selected heterogeneous fatigue states under the CFS umbrella. This
lead to inconsistent research results and inappropriate treatment
protocols like cognitive behavioral therapy (CBT) and graded exercise
therapy (GET), which caused many patients to become worse.
Review of : "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
Clinical Working Case Definition, Diagnostic and Treatment Protocols,"
J of Chronic Fatigue Syndrome, Vol. 11 (1) 2003, pp. 7-116. Bruce M.
Carruthers, MD, CM, FRCP(C); Anil Kumar Jain, BSc, MD; Kenny L. De
Meirleir, MD, PhD; Daniel L. Peterson, MD; Nancy G. Klimas, MD; A.
Martin Lerner, MD, PC, MACP et al.
74. Countess of MARR
: “ What are we doing to our teenage ME suffers when we force them
back to school, deny home tuition, and tell them to exercise as form
of therapy ? What will happen in 30 years time to children now getting
ME in a climate where they are disbelieved and told to pull themselves
Countess of Mar’s address in the House of Lords, 22 Jan 2004
75. Greg Crowhurst
The UK Government has spent millions of pounds setting up clinics
across the country which offer a common treatment programme of Pacing, CBT (cognitive behavioural therapy) and GET (graded exercise therapy).
According to one job description (2005) : "severely disabled,
fatigued patients and relatives (will be required ) to change
perpetuating illness behaviour and perform a self-managed activity
programme, regulate disturbed sleep patterns and modify predisposing
Royal Liverpool & Broadgreen University Hospitals NHS Trust , Job
title: Trainee Clinical Fatigue Therapist, Chronic Fatigue Treatment
Service Ref: 2570, January 2005
76. Stein E
Stein E (2007) points out how when measured objectively the CBT
trials delivered no statistical change.
Regarding the graded exercise therapy (GET) trials , Stein states
that only two RCT’s had positive results, but after 24 weeks there
were no benefits at all. Another study had no control group, and its
conclusion was that “exercise capacity should not be used as an
outcome criterion – the reason is because they could not find any
change”. A Belgium study concluded that “the results are less robust
than expected and it was noted that complete recovery was never
Stein E (2007) Behavioural Interventions in ME/CFS New Horizons
International Conference on ME/CFS Research, ME Research UK and the
Irish ME Trust DVD
77. Elsie Owing
It is very important to note that internationally CBT and exercise are
viewed as a coping strategy, to help people to "adjust to the
limitations of the disease. It does not attempt to convince them (as
in the UK, where it is used as a "treatment") that there is nothing
physically wrong with them."
Elsie Owing in Eileen Marshall and Margaret Williams Deliberate
Dichotomy? 10th November 2004
78. Severe ME patient
Graded Exercise Therapy worsened me dramatically and I have no doubt
had been a large factor in my being severely affected after 20 years.
Cognitive Behavioural Therapy - this did not make me worse but I feel
was completely inappropriate and didn't have any relevance to my day
to day life.
Greg Crowhurst East Anglia ME patients (EAME) Survey of the Severely
79. Severe ME patient
I've had CBT and GET. Both of these made me extremely worse for a
number of years and from which I am still recovering from and which
has still affected me."
Greg Crowhurst East Anglia ME patients (EAME) Survey of the Severely
80. Severe ME patient
“Hydrotherapy, using a form of GET, made me more and more ill and I developed spasms.”
“Common sense helps with pacing and graded exercise etc. CBT and GET
I don’t think are helpful, as often any course is very draining and I
cannot concentrate anyway”
Greg Crowhurst East Anglia ME patients (EAME) Survey of the Severely
81. Catherine Ashenfelter
Ashenfelter (2007) , for example, describes how one ME sufferer ,
referred in May 2007 to the National Hospital for help in managing
their illness and pain control, was placed in a mental ward,
alongside suicidal patients and “immediately put on a Cognitive
Behaviour Therapy and Graded Exercise programme and was denied pain
relief….. Her privately employed carer was phoned up at home and told
to no longer care for her in the future. “
Ashenfelter C (2007) Hospital Warning, The Quarterly, 25% Severe ME
Group, Newsletter, Issue 24, Winter 2007, p. 19
82. Ruth Nolan
Nolan (2007) outlines how in submissions to NICE, The British
Psychological Society said that “there is no evidence that GET (with
or without CBT) actually increases activity levels”, the Royal College
of Physicians said “Clinical evidence and patient experience suggests
strongly that some patients may be worsened with GET”, while the
Association for British Neurologists said that “the guideline needs to
be thoroughly revised to reflect our current understanding of this
condition rather than the supposition of the psychiatrists”.
Nolan R (2007) A serious lack of evidence for NICE guidelines BMJ
Rapid Responses to R Baker and E J Shaw Diagnosis and management of
chronic fatigue syndrome or myalgic encephalomyelitis (or
encephalopathy): summary of NICE guidance BMJ 2007; 335: 446-448
83. Chief Medical Officer
The Chief Medical Officer (2002) has warned that exercise-based
regimes advocated for less severely affected patients tend not to have
been studied among those most severely affected.
Department of Health (2002a) , A`Report of the CFS/ME Working Group.
Report to the Chief Medical Officer of an Independent Working Group,
London, The Stationary Office.
84. Dr Speedy
…the "revalidation therapies" for patients with ME/CFS, which are
monopolized by the governmental institutions for example in the UK,
Belgium and the Netherlands, are not only not efficient, but also
aggravate the condition of many patients.
Despite several major scientific breakthroughs, ME/CFS is still
described in the popular media as a medically unexplained disorder.
Psychotherapy (cognitive behavioral therapy) and graded exercise
therapy (GET) are declared to be the only possible therapies.
A thorough analysis of the current medical scientific literature and
international patient surveys, however, shows that CBT/GET is not only
ineffective for the majority of the ME/CFS patients, but also
potentially very harmful.
Scientific studies and large-scaled patient surveys have shown that
treatments with CBT/GET seriously deteriorate the condition of many
patients with ME/CFS.
The work capacity decreased as well!
The review also explains why GET and exercise do aggravate
characteristic complaints, like “fatigue”, pain, neurocognitive
problems (e.g. concentration and memory).
Pre-existing biological aberrations, e.g. inflammation, oxidative
stress, and dysfunctional ion channels, will be amplified by a minor
exertion, like walking or reading a book … and by “rehabilitation
therapies” like CBT/GET.
GET and CBT HARMFUL FOR ME/CFS
85. Frank NM Twisk, Michael Maes
We conclude that it is unethical to treat patients with ME/CFS with
ineffective, non-evidence-based and potentially harmful
"rehabilitation therapies", such as CBT/GET.
[A review on CBT and GET in ME/CFS: Not only ineffective and not
evidence-based, but also potentially harmful] – Source:
NeuroEndocrinology Letters, Sep 15, 2009
86. 25% Group
The July 2007 document ‘Defiance of Science’ by M Hooper et al (
www.meactionuk.org ) provides details of studies and references which
showed that prescribed exercise programmes for ME/CFS patients not
only cannot be complied with by them, but also results in worsening of
ME/CFS symptomatology (p3/4). In addition a number of references are
given of statements made by some of the very UK psychiatrists who
advocate these regimes, especially also CBT. For instance:
At the American Association for CFS (AACFS, now the IACFS/ME)
International Conference at Cambridge, Mass., on 10-11th October 1998, Wessely-School psychiatrist Michael Sharpe went on record stating that the benefits of CBT faded with time.
On 3.11.2000, Sharpe again confirmed “There is a tendency for the
difference between those receiving CBT and those receiving comparison
treatment to diminish with time due to a tendency to relapse in the
Wessely himself is on record stating that CBT doesn’t work for all: in
his Editorial (JAMA 19.9.2001:286:11) he stated that CBT + GET are
only “modestly effective” and that neither is “remotely curative”.
Wessely is also on record as stating: “It should be kept in mind that
evidence for randomised trials bears no guarantee for treatment
success in routine practice. In fact, many CFS patients, in
specialised treatment centres and the wider world, do not benefit from
these interventions.” (The art of diagnosis: pros and cons of
labelling chronic fatigue syndrome. Marcus JH Huibers + Simon
Wessely. (Psychological Medicine, 2006:36(7):895-900).
87. Dr Speedy
CBT is just as effective for a neurological illness as watching grass
grow….which is a lot cheaper actually…
88. Susan Wenger
CBT may help people with garden-variety chronic fatigue. It does NOT
reduce the severity of symptoms of chronic fatigue SYNDROME, which is
an organic disease.
Put it this way: sending a CFS patient to a therapist is much like
sending someone with multiple sclerosis to a therapist. At best, it
can help the person cope with the emotional difficulties of living
with a (so far) incurable disease. It's not going to ameliorate the
89. Terri Smith
M.E./CFS is not a mental condition, it is a neurological illness & CBT
has been repeatedly found by patient group surveys to worsen the
already debilitating symptoms.There is overwhelming research evidence
proving it is a physical illness. 80% of sufferers never recover, &
some live their lives in darkened rooms unable to speak or swallow. It
is time that the nursing profession stopped colluding with the
powerful psychiatric lobby that have redefined M.E. as a somatisation
disorder to their own personal gain. This redefinition makes sufferers
already difficult lives impossible. It is not acceptable enough in
2008 for the nursing profession to 'just follow orders' in the
treatment of M.E. patients as if they have a mental illness.
WORLD HEALTH ORGANISATION (W.H.O.) DEFINITION OF M.E.
ME/CFS is an acquired organic, pathophysiological, multi-systemic
illness that occurs in both sporadic and epidemic forms. Myalgic
Encephalomyelitis (ICD 10 G93.3), which includes CFS, is classified as
a neurological disease in the World Health Organization's
International Classification of Diseases (ICD). Chronic fatigue must
not be confused with ME/CFS because the "fatigue" of ME/CFS represents pathophysiological exhaustion and is only one of many symptoms. Compelling research evidence of physiological and biochemical
abnormalities identifies ME/CFS as a distinct, biological clinical
90. Dr John Greensmith
When therapists - or, sometimes, the patients themselves -claim that
CBT has helped their CFS, there are always other possible
explanations, such as improvement with time, resting or pacing, which
CBT advocates choose to ignore or overrule.
This month, at a Conference at the University of East Anglia,
Professors Mick Cooper & Robert Elliott from Strathclyde University
showed that the efficacy of CBT is a 'myth' and we are probably
wasting millions of pounds.
91. Joanna Ko
My daughter who has severe ME has attended 25 CBT sessions. It has
helped her to deal with the depression caused by this awful disease
but it has definitely caused deterioration in her ME symptoms which in
turn brought the depression back, as strong as ever. Overall-
drawbacks outweigh the benefits manifold.
92. Dr John Greensmith
The spectacular results claimed for CBT and GET depend on the say-so
of advocates and practitioners, unsupported by any independent
evidence. The latest review (Twisk & Maes, September 2009) confirms
that all the research to date shows that CBT is ineffective and GET
makes matters worse for M.E. sufferers. Yet, astonishingly, there are
calls for even more funding to expand the service.
Few, if any, voices are heard in opposition. Government ministers are
perhaps relieved that they can be said to be offering something rather
than nothing. Busy GPs may assume that the NICE guidelines are firmly
scientifically based and not even check the literature. Those with any
concerns may be remain silent rather than question the medical
establishment and patients who have been hurt may be reluctant to say
so for fear of being left even more isolated. The wailing and gnashing
of teeth is still audible for all but deaf ears.
Open letter to Professor Sir Liam Donaldson, Chief Medical Officer
RiME is particularly concerned about the plight of severely affected
PWME. Most mail comes from the latter. These people are desperate for
hope. One person wrote recently: "I don't want more GE/CBT/Pacing...
I'm sick of it. I just want someone to investigate what is going wrong
with my body. It's as simple as that."
94. Patricia Sanders and Jakob Korf, PhD
Chronic fatigue syndrome (CFS) is now recognized as a medial disorder.
In contrast to recent related reports, the present review focuses
primarily on aetiological aspects of CFS. Four major hypotheses are
reviewed. (1) Although CFS is often associated with viral infection,
the presence of viruses has as yet not consistently been detected. (2)
It is not clear whether anomalies of the HPA axis often observed in
CFS, are cause or the consequences of the disorder. (3) Immune
dysfunction as the cause of CFS is thus far the weakest hypothesis.
(4) The psychiatric and psychosocial hypothesis denies the existence
of CFS as a disease entity. Accordingly, the fatigue symptoms are
assumed to be the consequence of other (somatic) diseases. Other
possible causes of CFS are oxidative stress and genetic
predisposition. In CFS cognitive behavioural therapy is most commonly
used. This therapy, however, appears to be ineffective in many
patients. The suggested causes of CFS and the divergent reactions to
therapy may be explained by the lack of recognition of subgroups.
Identification of subtypes may lead to more effective therapeutic
Neuroaetiology of chronic fatigue syndrome: An overview
World Journal of Biological Psychiatry
2008, Vol. 9, No. 3, Pages 165-171 , DOI 10.1080/15622970701310971
People with M.E don't want sympathy - they just want the nonsense to
stop. They want proper biomedical research to be funded at government
level, they want the patronising, arrogant approach of the champions
of CBT to stop. CBT and graded exercise will not cure M.E - it may
cure other things but it will not cure M.E. People with ME are no more
mentally ill than the rest of the population. There is in fact NO
evidence that CBT and graded exercise help people with genuine M.E.
There *is* however evidence that graded exercise can make people with
M.E worse. Testimonies of people with M.E were actually ignored in the
“At present there is no convincing evidence that any treatments work
except CBT and graded exercise.'Nonsense. In fact, as has been pointed
out this may actually make matters worse.The reason that CBT is touted
for ME and Depression is that the Government is basing Pathways to
Work on the American welfare system where the Insurance companies
involved are allowed carte blanche in efforts to get people off
welfare.This includes fitting the illness to the desired cost outcome
regardless of clinical need.
97. Yamila Samsun
Why are there millions of CBT studies but no psychologist has ever
done one in patients with (very) severe ME? Just think about it.
If CBT would be the solution and the wonder therapy why is there no
study showing that patients who are tube fed can eat again because
they had CBT? Or they don’t need washing in bed or a bottle for
urinating because they now can walk again. The reason is very simple.
Of the patients with (very) severe ME, almost all of them have ME.
They don’t have psychiatric illnesses or fall in the category, we are
all a bit tired at times. It would be really nice if CBT would
help/cure them but that is just as likely as it would help patients
walk again if they are wheelchair bound due to MS or a spinal cord
injury after an RTA. And that is the real reason why there are no CBT
studies in patients where there is no doubt that they have ME. And
don’t say we can’t find those patients with (very) severe ME, because
estimates say there are 50-60,000 of them in the UK alone.
Back to Basics http://www.bmj.com/cgi/eletters/335/7617/446#175606
98. Dr Derek Englander
I decided to attempt to determine the effectiveness of the Graded
Exercise Therapy (GET) protocol in a known patient group suffering
from Myalgic Encephalomyelitis (ME). The protocol was tested in a
simple manner without double blinding but the original research was
also subjective. Twenty patients with Myalgic Encephalomyelitis (ME)
diagnosed according to the Fukuda criteria (3) were started on the GET
protocol. After 24-48 hours of the onset of GET, twelve of the
patients succumbed to relapse in their symptoms: massive fatigue,
increased muscle pain, pains in joints, brain "fog". During the
following week seventeen of the twenty patients suffered from
increased symptoms as delineated above. The protocol was continued for three weeks. There was no improvement. Some patients were so severely affected that they were bedridden for four weeks following the
protocol. GET was pronounced as the most effective method of treatment of ME by NICE. From this short but rather apparent review of the GET protocol, it is obvious that either the study group used initially by the NICE research did not suffer from ME or the results were not adequately analysed. It is apparent that this treatment is not the treatment of choice, in fact it is detrimental to the well being of the ME patient. The psychiatric psychopolitical group have used GET as a lever to support their theory,
GET is unhelpful and unhinges their theory.
NICE and ineffective GET Therapy
99. Dr Andrew Ashley
I have been going through the responses and in Belgium 18% worked
before CBT and Nijmegen claims 69% gets cured by CBT than 18 plus 69 = 87%, so 87% should be back at work after CBT. But apparently it is
only 14.9%; so what is the evidence for treating ME with CBT?
CBT makes you more ill http://www.bmj.com/cgi/eletters/335/7617/446#175606
100. Tom Kinlon
On the issue of group CBT, which is available in many NHS CFS services
around the UK, St Bartholomew's Hospital Chronic Fatigue Services gave
the following research information: "The only RCT of CBT using a group
approach showed that the treatment was no better than either usual
medical care or supportive listening in improving physical function,
one of its two primary outcomes, which it was designed to improve
(O'Dowd H, Gladwell P, Rogers CA, Hollinghurst S, Gregory A. Cognitive
behavioural therapy in chronic fatigue syndrome: a randomised
controlled trial of an outpatient group programme. Journal: Health
Technol Assess. 2006 Oct;10(37):1-140). A non-randomised waiting list
control trial of group delivered CBT found only modest effects on
fatigue and negative effects on function (Bazelmans E, Prins JB,
Lulofs R, van der Meer JWM, Bleijenberg G. Cognitive behaviour group
therapy for chronic fatigue syndrome: a non-randomised waiting list
controlled study. Psychotherapy & Psychosomatics 2005;74:218-24)."
Stakeholders comments on Draft Guidelines make for interesting reading
101. Dr Peter Saunders
Tip FIVE: discuss CBT, if it cures the patient your diagnosis of ME was wrong.
Tip SIX: ME patients have the so called threshold phenomenon, meaning
that they can’t increase their stamina like healthy people. If they
can or if GET helps to improve their stamina then again, the diagnosis
of ME was wrong.
Quick guideline to ME for busy GPs
P.S. Eng: The earlier version of today missed the expositions of what CBT and GET are. It may all need a bit correcting, which has to happen later.
Dut: De versie van eerder vandaag miste de uiteenzettingen over wat CGT en GOT zijn. Het kan iets aan correcties nodig hebben, maar dat zal dan later moeten gebeuren.