Greg Crowhurst 29 October 2009

"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" !