CBT & GET in ME : a Boundary Issue

Cognitive Behaviour Therapy and Graded Exercise Therapy in

ME : a boundary issue .

Greg Crowhurst

29 October 2009
(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 ME)

"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 http://www.25megroup.org/Campaigning/Gibson%20Inquiry.htm

Introduction :

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 "non-compliance".

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 deterioration.

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 weight-bear

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 worse"

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.

Conclusion :

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.

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