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Never Mind ME - What About 'Blame-the-Patient' Syndrome?

by Nancy Blake(more info)

listed in cfs me, originally published in issue 169 - April 2010

Elsewhere in this issue of Positive Health PH Online is an article by Dr Leslie O Simpson, describing his research into the nature of red blood cell changes in ME  http://www.positivehealth.com/article-view.php?articleid=2778. Briefly, in ME, as well as a number of other health issues, there is an increase in the number of irregular shaped red blood cells and a decrease in the number of normal ones (a change in the proportion), which affects the ability of the red blood cells to deliver oxygen to various body systems: the muscles, the brain, the endocrine system. He explains that these changes can be reversed in a significant percentage of cases by taking large doses of evening primrose oil. If this is not effective, fish oil may serve the same purpose, and injections of vitamin B12 as hydroxocobalamin also help in 50% of cases. The cause of these changes is not known, but they do correlate with periods of illness, and the blood reverts to normal during remissions. But his research has mostly been ignored, along with thousands of other research reports describing physiological abnormalities in people who have ME.

Following on from my last Expert Column, I have researched more deeply into our cultural and medical response to ME. Did you know that in the UK, patients who are referred for ME may be recorded as having a mental illness?[1] This is contrary to the Department of Health's own guidelines to accept the categorizations approved by the World Health Organisation, which classifies ME as a neurological disorder. This has very serious implications for ME sufferers. Mental illnesses are not accepted as physically disabling, either by medical insurers or by the DSS. Incapacity benefits are paid at a lower rate, and generally no help is offered in terms of funding for necessary aids and adaptations. Certain influential psychiatrists may also have been able to influence the publication of scientific articles; it is now extremely difficult for any article purporting to give a physiological explanation for ME to get published in a medical journal. Fortunately, there are self-publishing websites, and it is hoped that a book by Dr Leslie Simpson will become available via the online publisher lulu sometime in the next few months.

What does this have to do with NLP, you may well ask! It does have to do with the ethics of any therapeutic profession, and one needs to consider how a psychotherapist can ethically deal with a person who presents with symptoms of ME.

NICE recommend Cognitive Behaviour Therapy, and Graded Exercise Therapy which have sometimes been imposed upon unwilling patients.  The NICE Guidelines pay lip-service to treatment being decided upon in collaboration with the patient, who should remain in control of what they do and don't do. Whether this is the spirit of treatment in the psychiatrically dominated new centres is another question. They certainly do have the legal power to use coercion.

A psychotherapeutic interview, like any properly conducted diagnostic process, should look for causes that make sense in terms of the presenting problem/s. Any individual who had previously been functioning normally, and within a period of days or weeks has become unable to perform the slightest physical exertion without suffering extreme exhaustion and physical pain, who also had cognitive difficulties, short-term memory lapses, confusion, and disrupted body temperature, sleep rhythms, and appetite, becomes a diagnostic challenge for psychiatry. If, as certain sections of the psychiatric profession insist, these are simply changes in behaviour and beliefs, they are both sudden, and so wide-ranging that it would not be overstating the case to say the patient has become a completely different person. Such changes do not drop out of the sky. An ethically practising psychotherapist must enquire as to any recent events sufficiently traumatic to have produced such a major personality change within a very short period of time. Even victims of major disasters - think of people injured in a suicide bombing, those brave survivors hauled out from under buildings in Haiti, traumatised soldiers returning from Afghanistan - do not often show such dramatic transformations. What would it have to be that was so psychologically powerful as to cause a previously healthy person to become a bedridden hypochondriac?  Over a short space of time? If I could not, upon having a thorough diagnostic conversation with a prospective client, discover any event which seemed likely to have such an extreme effect, I would certainly refer that client for a thorough medical examination.

It seems to me that psychiatrists must have no respect for their own expertise if they can be so willing to label a condition as having psychiatric causes, when no convincing psychiatric cause can be found. A single physiological cause for ME has not yet been discovered; however, a wide range of physiological abnormalities have been noted in more than 4,000 articles on the subject. But there is no evidence that I know of that would justify ascribing these major changes to psychiatric causation. Lacking evidence of a credible cause in terms of the patient's past or current history, it seems the frequent recourse is to accuse the patient of being a bad person – "scenting the possibility of a career" as one psychiatrist expressed it. (It is obvious that a career as a disabled person in pain is one many of us would naturally aspire to!) It's time we developed a research tool for the diagnosis of the toxic pathology encountered by many ME sufferers in their doctors:  'Blame-the-Patient Syndrome'.

Reference

Professor Malcolm Hooper, Eileen Marshall and Margaret Williams. Corporate Collusion – An overview of the misinformation about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome arising from vested interests that pervades some UK Departments of State and other Agencies. Available from  malcolm.hooper@virgin.net. 2007. www.meactionuk.org.uk/Corporate_Collusion_2.htm

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About Nancy Blake

Nancy Blake BA CQSW, has worked in mental health settings since 1971. She served as Chair of the ANLP PCS (now the NLPtCA), on a National Working Party developing postgraduate standards for Psychotherapy (NVQ Level 5), and contributed to the document which led to NLP being accepted as a therapeutic modality by the European Association for Psychotherapy.  She has presented workshops at UKCP Professional Conferences on an NLP approach to working with victims of abuse, and in psychoneuroimmunology.  Recovering from ME since 1986, she is the co-author, with Dr Leslie O Simpson, of the book Ramsay’s Disease (ME) about ME, as well as A Beginner's Guide to ME / CFS (ME/CFS Beginner's Guides). Both titles are available both in paperback and Kindle formats on Amazon. Nancy was previously enrolled at Lancaster University in a PhD doctoral program; her thesis topic was Conflicting Paradigms of ME/CFS and how the Psychiatric Paradigm creates its Influence in contrast to the Medical Model. She may be contacted via alternatives@alternatives.karoo.co.uk  http://nancyblakealternatives.com/ Her books are available to purchase at www.amazon.co.uk/Nancy-Blake-BA-CQSW/e/B0089NS0RK/ref=ntt_dp_epwbk_0

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