A Dangerous Path : response to Santhouse et al 2010 .
et al, 2010) (sub-heading: "Defeatism among clinicians is undermining
evidence that it can be treated")
A Dangerous Path
Some of the points made in the Editorial are indeed correct, for example “the alternative to treatment is no treatment and this can have a disastrous effect on the patient, who may feel the medical profession has given up on them as a hopeless case.” There is indeed currently no effective treatment, no cure and little hope for people who are genuinely suffering from very severe ME, like I have done for the past 16 years.
What is missing from this article is any acknowledgement that it is the psychiatric lobby's influence in ME that has led to the confusion over what ME is and the lack of physical treatment and the lack of proper biomedical investigations. The psychiatric approach is to deny the physical reality of an ME patient's illness and to promote the unproven view that a person is ill because of maladaptive thinking and de-conditioning.
This is a very dangerous path to take , one which has led to a negation of the severity of illness and of the real physical suffering, that people endure. It has led to the most severely affected housebound and bed-bound people being left for decades , like myself, without appropriate physical investigation and biomedical ME support . It has also led to the shocking reality that the only front-line treatment currently being promoted, entirely wrongly, by the NHS, is psychosocial, completely ignoring the underlying physical dysfunction.
The severely affected are not even involved in research so how can their needs be known ? How can this article promote CBT and GET for very severely affected patients , when the psychiatric view is a complete denial of their very real , totally disabling physical experience ? This article will lead to further confusion in the medical profession , will potentially endanger people's lives and lead to untold suffering if followed.
Most people with very severe ME would find it too difficult to even be in a room with other people, due to acute hypersensitivity and a multiplicity of severe physical symptoms, let alone engage in therapy of any description, physical or mental. Yet this issue is not even raised in the article.
Reading this paper you might be convinced that ME is a psychiatric disorder . In reality ME is a neurological disease with physical multi-system dysfunction; a fact that is frighteningly downplayed and denied by the psychiatric lobby.
What is omitted from this article 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.