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Open letter: Submission about the creation of a new category
Monday 13 June 2011
Open letter: Submission about the creation of a new category called “Complex Somatic Symptom Disorder”, for the revised version of The Diagnostic and Statistical Manual for Mental Disorders (DSM-5), by the American Psychiatric Association, 7 June 2011.
From: Dr John H Greensmith, Founder, ME Free For All.org.
Of those people, who have previously submitted contributions about the same matter under review here – including this Research Psychologist and patient diagnosed with M.E. (Myalgic Encephalomyelitis) since 1988 – many will be inclined to write, “as last year” (This was my 2011 submission, Open Letter: Submission about the creation of a new category called “Complex Somatic Symptom Disorder”, for the revised version of The Diagnostic and Statistical Manual for Mental Disorders (DSM-5), by the American Psychiatric Association, 14 April 2010). Some may wonder whether whatever they say and however many others opine the same, will have any significant effect upon the entry finally chosen to appear in the manual of the profession, whose members proposed it.
I will, however, take time, to reinforce some points previously made and endorse those made by others. It is worth mentioning that you might have received many more submissions to take into account if a majority who will be affected by your classification were not too ill, insufficiently articulate, or in too great awe of your authority, to reply.
No individual or organisation has ever suggested that the M.E. component of ME/CFS should be dropped. Even those who appear to sincerely believe that the terms are synonymous and interchangeable appear to be hedging their bets lest a definitive diagnostic test for M.E. is ever discovered. On the contrary, there are some who, individually and, increasingly, corporately, on behalf of people with M.E. are confident that Myalgic Encephalomyelitis is a discrete illness, with an underlying physical cause, which may be defined without the symptom of “fatigue” at all. Some, including me, assert that, furthermore, its bookends, “chronic” and “syndrome” and, therefore, the whole package (CFS), are not only unnecessary but also unhelpful.
The aim of any science is to narrow the field, shorten the odds, increase the probability that a person has the particular condition, in this case the illness M.E. We have been and you propose to continue, travelling in the opposite direction. Even those who do prefer CFS admit, in their publications, that fatigue is “heterogeneous”, “ubiquitous” and “nebulous”. One may wonder what adjectives would make them think it was not such a good idea after all.
If any part of “somatoform” means continuing to hold on to an erroneous belief that one is ill, or is perhaps hypochondriacal, there ought to be evidence of such behaviour before a diagnosis with M.E. and/or that there are benefits of doing so which outweigh any disadvantages. Neither of these is usually true, when most people with M.E. had a good work or school attendance record and conducted the doctor only for perfectly reasonable concerns and, taking for granted no malingering, or faking, which seems unlikely, I don’t know a single M.E. sufferer who is financially better off, as well as being socially isolated and often with shattered relationships.
The other principal purpose of an accurately defined category is for recommending treatments for M.E. (and co-incidentally all other conditions trapped in this chronic fatigue bundle). I am only aware of two treatments, Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET), on offer from the orthodox medical establishment before the charlatans see their chance. None can claim a cure, by which I mean a complete return to their former working and social lives, or even a significant level of recovery without relapse. All have very serious criticisms to answer, especially GET, which, astonishingly, is promoted by those who practise it and by groups representing people with M.E., despite their own evidence showing that it makes a majority worse. The proposed CSSD category would appear to be offering more of these same treatments, which have not reduced the number of people remaining ill with M.E.
The above originally appeared here.
Submissions and comments to the DSM-5:
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