Greg crowhurst posted this to co-cure today
101 Good Reasons :Why it is wrong to provide CBT and GET to ME Patients.
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
http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm
2. Dr William Weir
Two forms of treatmentare 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
http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm
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.
http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm
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.
http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm
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 patients pathology and treatment of that
pathology.
..Graded exercise programmes may be significantly dangerous to many
of these ME patients
http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm
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.
http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm
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.
http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm
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.
http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm
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
and/or GET.
http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm
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
ME/CFS.
http://sacfs.asn.au/news/2009/12/12_10_exercise_guidance_note.htm
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.
http://www.jkrowbory.co.uk/about-me/
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.
http://www.mecfscanberra.org.au/docs/pacing.htm
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
hidden agenda.
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.
http://cfids-cab.org/MESA/ccpc-1.html
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
ME/CFS
Frank N.M. Twisk and Michael Maes
http://forums.aboutmecfs.org/showthread.php?947-CBT-GET-potentially-harmful-to-ME-CFS-patients
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.[10] 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
252).
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
management regime
There is no credible evidence to support the GDGs 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 Williams25thJuly
2008http://www.meactionuk.org.uk/Background_Information_re_CBT.htm
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 isnt it happening?
http://www.meresearch.org.uk/information/publications/rsmtalk.html
19. NICEGuidelinesblog
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.
http://niceguidelines.blogspot.com/2009/11/get-and-cbt-harmful-for-mecfs.html
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
www.25megroup.org/.../25 Group response 6.04.06.doc
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-075 Margaret Williams Redefining CBT.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. -
Condensed version
www.hfme.org/CBT_and_GET/Effects_of_CBT_and_GET_Condensed.doc -
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
success
ref: www.meactionuk.org.uk/Concerns_re_NICE_Draft.pdf).
For a detailed review of Wessely School indoctrination of State
agencies, and the impact of this on social and welfare policy, see
www.meactionuk.org.uk/Proof_Positive.htm .
Evidence submitted by Professor Malcolm Hooper (NICE 07)
http://www.publications.parliament.uk/pa/cm200607/cmselect/cmhealth/503/503we79.htm
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
http://www.norfolkandsuffolk.me.uk/latest.html#cbtget
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 Cohens d effect size across various CBT and
GET studies to be 0.48, which would generally be described as a small
effect size
http://www.bmj.com/cgi/eletters/340/feb11_1/c738
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
neurotic traits.
Do CBT and GET really work for Chronic Fatigue
Syndrome?http://www.bmj.com/cgi/eletters/340/feb11_1/c738
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
27. 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.
Conclusion :
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
http://www.bmj.com/cgi/eletters/340/feb11_1/c738
28. Vance Spence
In the context of ME/CFS, cognitivebehavioural 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 smallmoderate 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
http://www.bmj.com/cgi/eletters/340/feb11_1/c738
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
http://www.bmj.com/cgi/eletters/340/feb11_1/c738
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 CBT is based on flawed research, and goes
against patient, and research, evidence:
.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
http://meagenda.wordpress.com/2007/...om-tanya-harrison-to-nice-guideline-on-cfsme/
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
to death.
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
overdue.
A Dangerous Path to take
http://www.bmj.com/cgi/eletters/340/feb11_1/c738#231540
101 Good Reasons :Why it is wrong to provide CBT and GET to ME Patients.
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
http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm
2. Dr William Weir
Two forms of treatmentare 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
http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm
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.
http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm
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.
http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm
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 patients pathology and treatment of that
pathology.
..Graded exercise programmes may be significantly dangerous to many
of these ME patients
http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm
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.
http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm
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.
http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm
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.
http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm
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
and/or GET.
http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm
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
ME/CFS.
http://sacfs.asn.au/news/2009/12/12_10_exercise_guidance_note.htm
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.
http://www.jkrowbory.co.uk/about-me/
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.
http://www.mecfscanberra.org.au/docs/pacing.htm
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
hidden agenda.
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.
http://cfids-cab.org/MESA/ccpc-1.html
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
ME/CFS
Frank N.M. Twisk and Michael Maes
http://forums.aboutmecfs.org/showthread.php?947-CBT-GET-potentially-harmful-to-ME-CFS-patients
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.[10] 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
252).
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
management regime
There is no credible evidence to support the GDGs 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 Williams25thJuly
2008http://www.meactionuk.org.uk/Background_Information_re_CBT.htm
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 isnt it happening?
http://www.meresearch.org.uk/information/publications/rsmtalk.html
19. NICEGuidelinesblog
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.
http://niceguidelines.blogspot.com/2009/11/get-and-cbt-harmful-for-mecfs.html
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
www.25megroup.org/.../25 Group response 6.04.06.doc
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-075 Margaret Williams Redefining CBT.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. -
Condensed version
www.hfme.org/CBT_and_GET/Effects_of_CBT_and_GET_Condensed.doc -
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
success
ref: www.meactionuk.org.uk/Concerns_re_NICE_Draft.pdf).
For a detailed review of Wessely School indoctrination of State
agencies, and the impact of this on social and welfare policy, see
www.meactionuk.org.uk/Proof_Positive.htm .
Evidence submitted by Professor Malcolm Hooper (NICE 07)
http://www.publications.parliament.uk/pa/cm200607/cmselect/cmhealth/503/503we79.htm
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
http://www.norfolkandsuffolk.me.uk/latest.html#cbtget
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 Cohens d effect size across various CBT and
GET studies to be 0.48, which would generally be described as a small
effect size
http://www.bmj.com/cgi/eletters/340/feb11_1/c738
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
neurotic traits.
Do CBT and GET really work for Chronic Fatigue
Syndrome?http://www.bmj.com/cgi/eletters/340/feb11_1/c738
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
27. 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.
Conclusion :
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
http://www.bmj.com/cgi/eletters/340/feb11_1/c738
28. Vance Spence
In the context of ME/CFS, cognitivebehavioural 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 smallmoderate 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
http://www.bmj.com/cgi/eletters/340/feb11_1/c738
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
http://www.bmj.com/cgi/eletters/340/feb11_1/c738
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 CBT is based on flawed research, and goes
against patient, and research, evidence:
.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
http://meagenda.wordpress.com/2007/...om-tanya-harrison-to-nice-guideline-on-cfsme/
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
to death.
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
overdue.
A Dangerous Path to take
http://www.bmj.com/cgi/eletters/340/feb11_1/c738#231540
:sofa: