CBT and GET in ME: a Boundary Issue

Discussion in 'Fibromyalgia Main Forum' started by tansy, Nov 30, 2008.

  1. tansy

    tansy New Member

    Cognitive Behaviour Therapy and Graded Exercise Therapy in *

    *ME : a boundary issue .*

    * Greg and Linda Crowhurst *

    *29 November 2008*
    (may be reposted)

    * *

    * "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. " (Person with severe

    * *

    *"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." (Person with
    severe ME)*

    * *

    * "Having been a career in professional management, (before forced to give
    up work through ill health), as part of management development, I touched on
    CBT within the psychology of training so knew a little about its
    application/benefit. Not a cynic, I felt I was sufficiently self aware
    however to recognise that CBT was not the answer to the "very physical"
    symptoms with which I battle as part of M.E. and felt it was not the best
    form of treatment for me. (Person with severe ME) *

    *"I have not been offered CBT. My GP doesn't believe it will make any
    difference as I have no "faulty illness beliefs", am well motivated, and
    have adjusted my life to working within my (very limited) energy
    levels. "(Person
    with severe ME)*

    * *

    *All quotes are from (Crowhurst G 2005) 25% Group Submission to the
    Gibson Inquiry

    * *

    CBT and GET are constantly prescribed as universal treatments for ME,
    however they are not universal treatments, they may be treatments for CF and
    they may be appropriate rehabilitative techniques or tools to aid individual
    people to cope with chronic illness , however they can never be considered a
    treatment for ME and all the time they are, they act as smokescreen to delay
    and avoid awareness of the real issue, the need for genuine treatment based
    on biomedical fact and biomedical research.

    The use of CBT and GET as 'treatments' for ME are enabled because ME has
    been subtly and cleverly downgraded by introducing the term "CFS" as
    synonymous with ME. This is the beginning of the Great Lie that leads away
    from genuine testing, treatment and prognosis of this devastating illness
    towards the persecution and denial of extremely ill, severely disabled
    people , who may die as a result of this disease.

    The true reality of the nature of ME is denied by choosing to neglect the
    boundary separation issue between Chronic Fatigue Syndrome (CFS), which
    encompasses a whole host of disparate fatigue-related, possible mental
    health conditions and Myalgic Encephalomyelitis (ME), a specific World
    Health Organization recognized neurological disease.

    Under the ongoing influence of powerful vested interests , ME has
    become inextricably
    tangled with Chronic Fatigue Syndrome to such an extent that truth seems
    false and genuine need is misinterpreted as intentional dependency :

    The true number of symptoms in ME is constantly denied or ignored.

    · The physical tortuous reality of neurological ME is
    constantly denied,
    diminished, negated and ultimately neglected .

    · People are constantly not treated fairly , with equality. Because
    their true reality is denied, their equality is denied right across the
    board and they are disempowered. They do not have an equal voice , they are
    not considered equally valid in what they have to say and their complaints
    and demands for fair treatment are twisted and made into "deviance" and

    Equating ME with CFS , imposes wrong interpretations upon the ME
    sufferer's symptoms , life experience and needs. If you accept that the
    person with CFS who can or may get better from CBT and GET is the same as
    the person with neurological ME who cannot, it is easy to assume that the
    person with ME is :

    · not trying hard enough;

    · is malingering;

    · wants to be ill;

    · is a burden on society and deserves to be persecuted and exposed
    to extreme and often hostile red tape and procedures, which undermine the
    genuine need for benefits, medical treatment, biomedical consultancy,
    understanding and compassion.

    The argument that both CBT and GET are simply not being done properly by
    the host of ME sufferers who have tried it and been damaged by it, is,
    disturbingly, being used to advocate greater training of therapists and
    greater therapeutic input, by some of the biggest ME Charities, a persuasive
    stance perhaps; but a stance which is starkly at odds with its own ME
    membership : *people with ME, over and over again, in surveys say they do
    not want CBT or GET. There is no evidence that CBT and GET works in ME (as
    opposed to "CFS") and there is no valid justification for NICE to advocate
    them so strongly.*

    Powerful vested interests, however, have much to gain.

    In theory, according to the NICE guidelines currently being challenged
    through Judicial Review, patients can "choose" whether or not to participate
    or not in a CBT/GET programme , however it should never be left up to very
    ill patients, who may have severe cognitive difficulties and other severe
    symptoms , to have to refuse what is wrongly deemed as "treatment".

    ME sufferers may not have the cognitive ability to explain their reasoning
    or the physical and emotional energy to stand up for themselves.

    The reasons why it is so dangerous to offer these rehabilitative techniques
    to patients with ME is precisely because they are not being treated as aids
    to recovery but solutions to a problem and treatment in themselves.

    They also imply a false assumption that you can , will and should get

    well / better , if only you follow the regime; yet as the Chief Medical
    Officer (2002) stated , anyone severely affected for more than 5 years has
    a poor prognosis of recovery .

    The only way that anyone could possibly accept that CBT and GET are
    suitable treatments for ME is :

    · by neglecting to separate CFS from ME

    · by omitting or denying the true physical nature of ME

    · by diminishing the biomedical need of the person with ME.

    *The deciding moment*

    Choosing to accept that CBT and GET are a treatment for ME is a
    definitive choice, for it is to adopt a posture that could easily end up
    persecuting and victimizing this already marginalized and denied group of
    people. It is to accept the inappropriate psychiatric paradigm; whether
    intentionally, through unawareness , or by default.

    Particularly vulnerable are those new to the illness who are given a CFS
    label and do not even know if they have ME or not and are therefore exposed
    to these psychosocial treatments, whether appropriate or not. Desperate to
    get better they may try them and place themselves at great risk of

    Thousands around the world, newly ill with ME, may not understand the
    dangers of following a CBT/GET pathway and will be more likely to trust
    and accept it is appropriate without questioning.

    The continued offering of Cognitive Behavioural Therapy and Graded Exercise
    Treatment as frontline treatments for people with ME has to be stopped, and
    the toxic "CFS" label must be dropped once and for all from "ME" !

    * *

    *The experience of Severe ME sufferers who have experienced CBT and GET :

    Taken from both the EAME/25% Group Norfolk/Survey (Crowhurst & Crowhurst 2007
    (*www.metrainingco.org.uk *) and the Gibson Survey for 25% Group (Crowhurst
    2005 (*http://www.25megroup.org/Campaigning/Gibson%20Inquiry.htm)*

    * *

    these are the voices and experiences of those who best know the awful
    truth about CBT and GET :

    o *My GP gave me a leaflet his practice had received from Simon
    Wessley's unit at Kings College Hospital in London. I read it and said that
    the condition it described had no similarities to what I was experiencing.
    He suggested I go for an initial assessment anyway which I did – at great
    cost to my health. On arrival I was horrified to find that the 'CFS' unit
    was in the psychiatric department KCH and at that time, security doors
    protected it. I was also concerned that I was attending a 'CFS' unit since
    this label did not describe my complaint. It came as a shock to be seen by a
    psychiatrist who displayed little or no understanding of what I told him. My
    symptoms, most of which are included in the Canadian Criteria, were
    dismissed or ignored. At the end of the consultation he suggested a course
    of CBT and said I should take up exercise and get some hobbies. Six months
    later I was called for a course of CBT which I declined. The therapist
    became aggressive and defensive when I explained why.*

    * *

    o *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 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.*

    * *

    o *It ruins lives. If you do not respond to CBT and Graded Activity
    you are given up on. The medical profession, and lay persons, think that ME
    is just pain and fatigue and we are all depressed, even in the face of
    evidence to the contrary. The only treatments offered aim to correct these
    symptoms, and any other symptoms are classed as psychosomatic. Because of
    this serious, debilitating and potentially life threatening symptoms are
    left untreated causing unnecessary suffering. *

    * *

    o *If you do not respond to Graded Activity, the Benefits Agency seem
    to think you are either malingering or depressed and benefits are refused. The
    Agency, and in particular their Medical Examiners, seem oblivious to the
    problems and symptoms of severe ME and all seem under the impression that
    everyone with ME recovers in under 5 years. If you are still ill after that
    it either isn't ME or you are mentally or behaviourally ill in some way. *

    * *

    o *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

    * *

    o *"We wish of course that we could recover from the illness, and
    resume a normal life, with a little graded exercise/activity and a
    positive mindset. It would be the perfect solution without having to resort
    to drugs and the risk of side effects. But it simply doesn't work for those
    correctly diagnosed with ME and in some cases can actually make matters even

    * *

    o *"CBT in particular is understandably appealing to the DoH as it's
    an apparently cheap option to deal with an expensive problem. But it
    appears to be a red herring dressed up as a cure by those who seek to deny
    the physical reality of the illness", *

    * *

    o *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.*

    * *

    o *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. ***

    o *"**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."***

    * *

    o *Have had CBT before I moved here and the exertion, traveling and
    questioning was exhausting and made me worse. ***

    * *

    * *

    o * "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*

    * *

    o *ME and CFS should be considered as separate illnesses when
    treatments are being considered. For example, I am sure there are instances
    where graded exercise could be very helpful in CFS whereas I know, as a
    severe ME sufferer, that in my case it would do far more harm than good*

    o *Graded exercise don't work.***

    o *Please research severe ME (bedridden patients) and please stop
    putting money into psychological interventions (CBT, Activity Programs,
    Behavioural Models) – research the physical aspects of the disease, it's
    cause, management and treatment instead.***


    If we are not listening to the voice of the ME sufferer, then who are we
    listening to ?

    Who is benefiting?

    Certainly not the* *very ill people who have the serious neurological
    chronic disease: Myalgic Encephalomyelitis.

    * *
  2. Juloo

    Juloo Member

    I know that the UK has been fighting the GET/CBT approach (?) to ME. I think it's just terrible that this is offered as some type of CURE -- as if there wasn't something actually wrong that a change of mind wouldn't help.

    The CFIDS Association of America publishes its CFIDS Chronicle four times a year. The Fall 2007 issue included an article entitled "Changing Tide: Reappraising Cognitive Behavior Therapy" by Eleanor Stein. I wish I could find an online copy for you or to post here, but it isn't on their website.

    I can only say that I wish every doctor and care provider would read it and take it to heart. It squarely puts CBT into the "adjunct only" category, and only if the patient believes that s/he has behavioral issues that are adversely affecting life. It is NOT a substitute for medical treatment for a physical illness.
  3. tansy

    tansy New Member

    to the work of Eleanor Stein; she is well known and highly respected by PWME in the UK.

    I have only had time to do a brief internet search and was unable to find that particular article. Dr Stein has written a guideline for psychiatrists; quite different from the Wessely School's. Below is a summary of Dr Stein's contrubution to a UK based international conference that Margaret Williams included in her paper "Defiance of Science" 2007.

    tc, Tansy

    Keynote Lecture by Dr Ellie Stein: Behavioural Interventions in ME/CFS: What a difference a decade makes

    Dr Stein began by saying she was a psychiatrist with a dedicated ME/CFS practice (in Calgary, Canada). She immediately referred to “the charged political atmosphere in the UK”. She stated that ME/CFS is a chronic condition and that it is very clear that it has “a host of physiological abnormalities that cannot be explained by psychiatric, attitudinal or behavioural hypotheses”. She stated from the outset that behavioural interventions “are unlikely to be curative” but may be extremely helpful in helping people to cope better with any chronic illness.

    Stein stated that the UK strategy about graded exercise therapy (GET), which she described as “no pain, no gain”, is wrong.

    She said that in the early 1990s there had been emphasis on the “psychological, not the biological” and that this transition “informed about a decade of research, especially in the UK. Early UK models were based on the belief that acute illness behaviour – avoidance of activity, elevated autonomic arousal – were causing or perpetuating ME/CFS. Therefore it follows that if you have that causal hypothesis, you have to adjust those variables in order to get people better. It’s never been overtly stated, but it’s clear that the ‘bio’ of the biopsychosocial model is somehow forgotten in those early UK papers”.

    Stein strongly denounced the UK Oxford (Wessely School) criteria, which she said “could describe almost anybody. I do not believe that studies which use the Oxford criteria can be generalised to patients which most of us in this room would consider to have ME/CFS”.

    Stein then discussed the seven random controlled trials (RCTs) that exist of CBT in ME/CFS and expertly demolished them. She said that out of those seven RCTs, two had used the Oxford criteria; two further studies had negative results “meaning that it didn’t work”; one of the studies supposedly used the Fukuda criteria but “if you actually read the paper, it actually used the British criteria”. Stein said there is one study with good methodology, but it was on adolescents. There is one more RCT (the O’Dowd study) which had very detailed methodology, and it is clear that the CBT used in that study “looks nothing like the Sharpe and Wessely CBT of the 1990s – it’s an entirely different animal”.

    Stein said it’s clear “ that CBT has actually changed and evolved over the last 15 years, and current studies look little like the studies of the early 1990s”.

    Stein mentioned that there are a couple of non-randomised studies which claim CBT improved cognitive function. She noted that previous studies of CBT never looked at objective measures and that no-one has looked at other symptoms apart from how the patient feels (ie. subjective outcomes) and she noted that when measured objectively, CBT delivered no statistical change.

    Moving on to graded exercise therapy (GET), Stein said there are four RCTs of GET in the 2004 Cochrane Review. Two used the Fukuda criteria and initially, both 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”. The final study (a Belgian study written in French) was not a controlled study but is notable because it was so big – 951 subjects received treatment, but the diagnosis and treatments differed between the five participating centres. The study’s conclusion was that “the results are less robust than expected and it was noted that complete recovery was never recorded”. Further, “there was no objective improvement on the exercise test, which was the only objective measure used. They measured work hours prior and post, and there was no increase; the number of work hours actually decreased”.

    Stein then addressed the self-management model and said it is being widely used round the world for all kinds of chronic conditions. This is a very different model from the early CBT used in ME/CFS: instead of telling patients that they don’t have an illness, the model actually tries to educate people about their illness and encourages patients to note their symptoms -- and things that influence those symptoms -- so that patients can take control over their own health: “patient empowerment is the key to this model”.

    When speaking about the Stanford model of behavioural intervention (of which the Wessely School is much in favour – see http://www.meactionuk.org.uk/Proof_Positive.htm) Stein said that where life-style is not directly influencing health, the benefits of the Stanford model are less clear than in diseases where life-style is a significant factor. There was a recent Editorial in the Medical Journal of Australia that argued persuasively that the results of the Stanford model of CBT are not as good as had been hoped, and this did not relate to ME/CFS but to disease in general.

    Stein made clear her views on the MRC PACE trial that is using the British (Wessely School) criteria, saying “It’s quite hard to watch millions of pounds being spent on a study that will tell us nothing”. This statement was greeted with spontaneous applause from both the audience and other speakers on the platform.

    Stein summarised her lecture thus:

    · “most research has ignored symptoms other than fatigue, so we really don’t know if behavioural interventions help things like swollen lymph nodes, fever, IBS, dizziness etc”

    · “there is no evidence so far that behavioural interventions change objective, measurable things, but so far, the results have been negative”

    · “we need research and we have to know what we’re treating; unless we have research that allows us to clearly understand the pathophysiology of the illness, treatments are going to have disappointing results”

    · “we need to educate professionals – only one out of 18 Canadian medical schools teaches anything about ME/CFS”. Stein said she had offered her services in medical education but her offers had not been taken up

    · “unless doctors – who are the gate-keepers of the medical system – first acknowledge that ME/CFS exists and second, have a basic understanding, the average patient is not going to get better”

    · “we have to sub-group: if we lump everybody together, we’ll never learn anything, and in 20 years we’ll still be in the same fuzzy mess that we were in 5 years ago”

    · “we need to remember that everyone (with ME/CFS) has to be treated individually”

    · “we need integrated research that includes biochemistry, environmental exposures etc”.

    In the Question & Answer session that followed her presentation, Dr Stein was outspoken: “I would never in my practice use the Wessely model of cognitive therapy – I find it disrespectful to try to convince somebody they don’t have an illness that they clearly have”. Once again, this was greeted with applause.

    Professor Klimas was still on the platform and was sitting next to Dr Stein; she obviously agreed with Dr Stein and at this point Professor Klimas said: “To dismiss people as not being real – that’s just rude”.
  4. Juloo

    Juloo Member

    Your depth of research is considerable!

    I couldn't find a copy of the article either, although a copy of the journal for that quarter can be ordered. I'm disappointed that the CFIDS Association does not choose to publish its archives online for others to read, as many, many by-subscription magazines do.

    But kudos to you for knowing exactly what to post to represent her point of view. This second post here puts behavioral therapy in its correct relationship in treating this disease we share.

    [This Message was Edited on 11/30/2008]