This is the submission to the DSM V review that Prof Hooper and Margaret Williams have written on behalf of the 25% Group. It has been submitted to the APA. The 25% group is a UK ME charity for those most severely affected. It's a great read, well worth the effort, enjoy. Submission re: DSM-V and ME/CFS Compiled by Professor Malcolm Hooper and Margaret Williams for submission by The 25% ME Group 20th March 2010 Introduction The 25% ME Group for the Severely Affected is a registered UK charity representing people who are profoundly disabled by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Myalgic Encephalomyelitis (ME) has been classified by the World Health Organisation (WHO) as a neurological disorder since 1969. Currently it is listed in the International Classification of Diseases (ICD), chapter 6, under Disorders of Brain at ICD-10 G 93.3. In the 1992 revision of the ICD, the WHO approved the term Chronic Fatigue Syndrome (CFS) as a term by which ME may be known. The term CFS is coded only to ME at ICD-10 G93.3, hence the composite term ME/CFS is often used to denote the disorder. A synonymous term also sanctioned by the WHO is postviral fatigue syndrome. This submission is a public record of the charitys concern relating to the forthcoming revision of the American Psychiatric Association (APA)s Diagnostic and Statistical Manual for Mental Disorders (DSM) and the intention to create a new diagnostic category of Complex Somatic Symptom Disorder (CSSD) which would combine existing categories of somatisation disorder, undifferentiated somatoform disorder, hypochondriasis and pain disorder (APA; Justification of Criteria Somatic Symptoms, 1/29/10). An influential group of American and European psychiatrists, including British psychiatrists Professors Michael Sharpe, Peter White and Simon Wessely (often referred to as the Wessely School: Hansard; Lords, 9th December 1998:1013), together with Francis Creed (since 1997, Professor of Psychological Medicine in the Psychiatry Research Group in the Manchester University School of Medicine; European Editor of the Journal of Psychosomatic Research and a member of the Medical Research Council Advisory Board) does not accept the WHO classification of ME/CFS as a neurological disorder but assert that it is a functional somatic syndrome (ie. a mental disorder). Although the CSSD literature currently does not specifically mention the terms ME or CFS as proposed inclusions, the existing evidence suggests that the DSM Somatic Symptom Disorder Work Group intends to ensure that ME/CFS will fall within the purview of the new category of CSSD because they believe ME/CFS to be an example of a CSSD (ie. they believe that ME/CFS patients complain of physical symptoms that do not result from underlying physical disease but are the consequence of abnormal illness beliefs, and that the abnormal beliefs are responsible for the perpetuation of the perceived disability). It seems clear that in clinical practice, these psychiatrists would like to see the diagnosis of ME/CFS replaced by a diagnosis of CSSD (ie. a psychiatric classification instead of an organic one) and that they are working diligently to achieve their aim. However, on 28th June 2001 the Classification, Assessment, Surveys and Terminology (CAS) Measurement and Health Information Systems (MIS) section of the WHO confirmed that it had no plans whatsoever to remove ME from the section on Disorders of Brain and transfer it to a psychiatric classification. The WHO provided further confirmation on 6th August 2002, when it reconfirmed that ME will not be reclassified as a psychiatric disorder and will remain in the neurology section of the ICD, and on 24th March 2003 the WHO confirmed that ME/CFS cannot be known as or included with any mental or behavioural disorder, once again confirming that it will remain classified as a neurological disorder, and that the WHO has no intention of re-classifying it as a psychiatric disorder in any forthcoming revision of the ICD. In the years following this confirmation, yet more evidence of neurological pathology in ME/CFS has emerged and therefore in order to harmonise with the ICD, the APA needs to ensure that ME/CFS does not by default fall within the ambit of the proposed diagnostic category of CSSD that will appear in the forthcoming DSM-V. It is submitted that the proposed diagnostic criteria for CSSD are conceptually flawed because they lack sufficient specificity to be clinically meaningful. They do not define the target population and represent a potential threat to people with a diagnosis of ME/CFS as they are open to misapplication by clinicians who refuse to accept the substantial evidence that ME/CFS is an organic disorder. Submission Evidence that the DSM CSSD Work Group believes ME/CFS to be a somatoform disorder UK Professors Creed and Sharpe are members of the DSMV Somatic Symptom Disorder Work Group and were members of Conceptual Issues in Somatoform and Similar Disorders Project (CISSD, not to be confused with CSSD) that was launched by Richard Sykes to stimulate dialogue about the taxonomy of functional somatic syndromes, which the CISSD Group asserted included irritable bowel syndrome, Chronic Fatigue Syndrome and fibromyalgia. (Richard Sykes was formerly Director of the ME charity Westcare, now merged with the charity Action for ME, whose brother Sir Hugh Sykes is a non-executive Director of Action for Employment known as A4e, the largest European provider of Welfare to Work programmes that implements a social policy introduced in the UK in 1997 which focuses on specific groups of people claiming benefits, including those on disability benefits). According to Sharpe and Sykes, the CISSD Groups aim was to make the criteria for Somatoform Disorder either more inclusive or to add a lower threshold category (Kurt Kroenke, Michael Sharpe, Richard Sykes. Review Article: Revising the Classification of Somatoform Disorders. Psychosomatics 2007:48:277-285). The 2007 Review discusses pseudo-neurological symptoms; misinterpretation of bodily symptoms; rumination about bodily symptoms; catastrophizing, ie. fear of bad outcomes despite reassurance and seeking care from multiple providers for the same symptoms, all of which exemplify the Wessely Schools description of ME/CFS patients and which form the bedrock of the APAs new category of CSSD. The DSM classification uses multiple axes (Axis I, referring to psychiatric diagnoses; Axis II, referring to personality disorders, and Axis III, referring to general medical conditions). The 2007 Review discusses whether these so-called functional somatic syndromes such as chronic fatigue syndrome would properly be placed on Axis III (but) this can be seen as inconsistent if a patient with the same symptoms seen by a psychiatrist is diagnosed with a somatoform disorder on Axis I. An Axis I diagnosis is required in some healthcare systems to justify financial reimbursement to a mental health professional. Of particular concern is the fact that a diagnosis of somatisation may depend on a total symptom count, which may bypass the methodological difficulties in arbitrating symptom aetiology, because there are over 50 recorded symptoms in ME/CFS (The Disease of a Thousand Names. David S Bell. Pollard Publications, New York, 1991). At the Royal Society of Medicine meeting on 28th April 2008 on CFS, Professor Peter White advised that once a CFS patient has more than four symptoms, it was likely that s/he had a psychiatric disorder. Such a belief cannot be objectively verified and is not in accordance with the British Medical Associations advice on complex medical disorders. The Foreword to The British Medical Association Complete Family Health Guide is clear: The Guide is based on advice from a panel of medical consultants chosen by the BMA, and their experience provides an unrivalled assurance of quality and reliability. Under hyperthyroidism, the BMA consultants list 10 symptoms; under Cushings syndrome, 11 symptoms are listed; under asthma, 11 symptoms are listed; under chronic kidney failure, 8 symptoms are listed; under AIDS, 13 symptoms are listed. The unproven beliefs of the psychosocial school have no relevance to complex organic disorders such as ME/CFS. However, these psychiatrists have variously described the discrete neurological disorder ME/CFS as: medically unexplained symptoms (referred to as MUS): .MUS. This term is now used in preference to somatisationThe medical specialities employ shorthand descriptions for particular clusters of MUS, including irritable bowel syndrome, fibromyalgia and chronic fatigue syndrome (L. Page, S. Wessely, JRSM 2003:96:223-227). somatisation: in relation to ME/CFS patients correct belief that there is viral involvement and Wesselys chapter Viruses and fatigue: the current status of the chronic fatigue syndrome in Biological Factors and Psychiatry edited by Kurskak E, New York, Plenum, 1991, Wesselys colleagues emphasise that Wessely sees viral attribution as somatisation par excellence (Helen Cope, Anthony David, Anthony Mann. Journal of Psychosomatic Research 1994:38:2:89-98). (Note that the correct citation should be Psychiatry and Biological Factors and that the editors name is Kurstak E). Professor Sharpe argues that people with ME/CFS are not ill as a result of any physical disease; he is on record as affirming that ME is a pseudo-disease diagnosis (Occup Med 1997:47:4:217-227); his view about ME/CFS has long been that the issues surrounding (it) are the same as those surrounding acceptance and management of (patients) who suffer conditions that are not dignified by the presence of what we call disease (J Psychosom Res 2002:52:6:437-438) and he maintains that patients with ME/CFS choose the advantages of the sick role and therefore should not qualify for welfare benefits. It is also his belief that ME/CFS patients are the undeserving sick of our society and our health service because they refuse to be placed into and accept the stigma of mental illness (Michael Sharpe; ME. What do we know real physical illness or all in the mind?; lecture given in October 1999 hosted by the University of Strathclyde). neurasthenia: Neurasthenia remains in the Mental and Behavioural Disorders chapter (of ICD-10) under Other Neurotic Disorders. Neurasthenia would readily suffice for ME (A. David, S. Wessely, Lancet 1993:342:1247-1248). a functional somatic syndrome: .the existence of specific somatic syndromes (in which the authors include ME/CFS) is largely an artefact of medical specialisation.Functional somatic syndromesare associated with unnecessary expenditure of medical resources (S. Wessely, C. Nimnuan, M. Sharpe, Lancet 1999:354:936-939). in 2002, Michael Sharpe wrote a paper titled Functional Symptoms and Syndromes: Recent Developments (published in Trends in Health and Disability by the insurance company UNUMProvident: http://www.unumprovident.co.uk/NR/rdonlyres/E03B0BCF-EAA0-45B6-95E2-54BEC5C600F8/0/CMOReport2002.pdf) in which he stated that functional somatic syndromes have been referred to as hysteria, abnormal illness behaviour, somatisation, somatoform disorders.Recently, the terms MUS and functional symptoms have become popular amongst researchers. In his table of Common medically defined functional syndromes Professor Sharpe included the taxonomically separate disorders Chronic Fatigue Syndrome, fibromyalgia (classifed in ICD-10 at M79), irritable bowel syndrome and multiple chemical sensitivity and proposed that these conditions be considered together as a general functional somatic syndrome. It is of note that the creation of a CSSD category would represent the fulfilment of Professor Sharpes proposal. Functional somatic syndromes.include chronic fatigue syndrome.Perpetuating factors have particular importance in understanding CFSPhysical deconditioning as a consequence of reduced activity may contribute towards greater experience of symptoms (Hyong Jin Cho, Simon Wessely, Rev Bras Psiquiatr 2005:27:3). a classical psychosomatic disorder: Anorexia Nervosa (AN) and chronic fatigue syndrome (CFS) are classical psychosomatic disorders where response to social threat is expressed somatically (advertisement for a psychology graduate to work with ME/CFS patients placed by the Institute of Psychiatry; the closing date for applications was 13th July 2007 and the job reference was 07/R68. The post-holder was to work under the direction of Professor Trudie Chalder, a behavioural therapist who, together with Michael Sharpe and Peter White, is one of the Principal Investigators of the MRC PACE Trial). It is also the belief of these psychiatrists that cognitive distortions (ie. aberrant or maladaptive illness beliefs) are responsible for the perpetuation of ME/CFS, for example: cognitive distortions: I will argue that ME is simply a belief, the belief that one has an illness called ME (Microbes, Mental Illness, The Media and ME: The Construction of Disease; Simon Wessely; 12th May 1994; 9th Eliot Slater Memorial Lecture, Institute of Psychiatry, London). CFS is dogged by unhelpful and inaccurate illness beliefsthey include fears and beliefs that CFS is caused by a persistent virus infection or immune disorder (Anthony J Cleare, Simon C Wessely; Update 1996:14th August: 61). The clinical problem we address is the assessment and management of the patients with a belief that s/he has an illness such as CFS, CFIDS (chronic fatigue immune dysfunction syndrome, a term used in the US) or ME.The majority of patients seen in specialist clinics typically believe that their symptoms are the result of an organic disease processMany doctors believe the converse (Sharpe M, Chalder T, Wessely S et al. General Hospital Psychiatry 1997:19:3:185-199). The MRC PACE Trial Identifier says: CBT will be based on the illness model of fear avoidance. There are three essential elements: (a) assessment of illness beliefs and coping strategies, (b) structuring of daily rest, sleep and activity, with a graduated return to normal activity, (c) challenging of unhelpful beliefs about symptoms and activity (Section 3.2). the symptoms and disability are perpetuated predominantly by unhelpful illness beliefs (fears) and coping behaviours (avoidance) (MRC PACE Trial CBT Manual for Therapists, page 18). Since a diagnosis of CSSD requires the presence of somatic symptoms and cognitive distortion, it can be seen that the Wessely School would consider ME/CFS to fall within that proposed diagnostic category. Dismissive of the WHO classification, the Wessely School asserts: Medical authorities are not certain that CFS is exactly the same illness as ME, but until scientific evidence shows that they are different they have decided to treat CFS and ME as if they are one illness (http://pacetrial.org/PCL version 09.pdf) and instructs doctors involved with the Trial that: if a participant calls their illness ME dont attempt to challenge this, ME or CFS is an appropriate term to use (MRC PACE Trial; SSMC manual for participating doctors, page 13). Thus there can be no dispute that the Wessely School is referring to the specific neurological disorder ME/CFS, and that their unauthorised reclassification is not in accordance with the WHO taxonomy. Using Professor Wesselys own material, in 2000 the neurological disorder ME/CFS was included in a textbook for General Practitioners entitled Guide to Mental Health in Primary Care that was produced by the WHO Collaborating Centre for Mental Health at the Institute of Psychiatry, London. However, on 16th October 2001 the WHO issued a statement repudiating this unauthorised reclassification, confirming in writing: Postviral fatigue syndrome remains under diseases of the nervous system as G93.3. Benign myalgic encephalomyelitis is included within this category. Neurasthenia remains under mental and behavioural disorders as F48.0 and fatigue syndrome is included within this category. However, postviral fatigue syndrome is explicitly excluded from F48.0. It is possible that one of the several WHO Collaborating Centres in the United Kingdom presented a view that is at variance with WHOs position. I understand that the Collaborating Centre concerned has now made changes to the information on its website after speaking with WHO. Undaunted, and rejecting the taxonomic principles employed by the WHO, Wessely School psychiatrists then asserted that the WHO had classified the same disorder (ME/CFS) in two places, once in the Neurological Section (ICD-10 G93.3) and also in the Mental and Behavioural Section (ICD-10 F48.0). Once again, their claims were formally repudiated in writing by the WHO; on 23rd January 2004, Andre LHours from the WHO headquarters in Geneva confirmed that: According to the taxonomic principles governing ICD-10 it is not permitted for the same condition to be classified to more than one rubric as this would mean that the individual categories and subcategories were no longer mutually exclusive. The Wessely School, however, has continued to ignore the clarification provided by the WHO. In his presentation at the Royal Society of Medicines conference on Chronic Fatigue Syndrome on 28th April 2008 Professor Peter White said: Im going to try to define what Chronic Fatigue Syndrome is. By doing so, Im going to review the ICD-10 criteria for the illness and see if theyre helpful. The answer will be, they are not helpfulDoes the ICD-10 help us? Unfortunately not; there are at least five ways of classifying CFS using the ICD-10 criteria. What are they? We start off well: myalgic encephalomyelitis is in the neurology chapter of ICD-10and helpfully, chronic fatigue syndrome, postviral. So it starts off well. What if the viral illness is not a clear trigger for the illness? Well, youve got alternatives: in the Mental Health Chapter, youve got Neurasthenia. Despite the fact that eighteen years previously, the American Medical Association confirmed that chronic fatigue is not the same as the Chronic Fatigue Syndrome (JAMA press release, 1990, referring to the issue of 4th July 1990), Professor White conflated chronic fatigue (ie. ongoing tiredness) with Chronic Fatigue Syndrome (ie. a neurological disorder), thus further demonstrating his belief that ME/CFS (ICD-10 G93.3) is the same as psychogenic fatigue (ICD-10 F48.0). He discussed the various somatoform classifications in the ICD-10, before saying: the trouble with these diagnoses is, you somehow have to guess that psychological factors have an important role to play in their aetiology. He concluded his presentation: ICD-10 is not helpful and I would not suggest, as clinicians, you use ICD-10 criteria. They really need sorting out, and they will be in due course, God willing (What is Chronic Fatigue Syndrome and what is ME?; webcast: http://rsm.mediaondemand.net/player.aspx?EventID=1291). That was a clear instruction to clinicians to disregard the ICD-10 classification of ME/CFS as a neurological disorder. Diagnostic accuracy is of vital importance in medicine: a person with a specific and complex neuro-immune disorder such as ME/CFS requires very different management and care from a person with an ill-defined state of chronic tiredness. It is indisputable that these psychiatrists have subsumed the nosological disorder ME/CFS within a wide range of undifferentiated states of medically unexplained chronic fatigue (ie. they have claimed it as a somatisation disorder); that they ignore the pathognomonic feature of ME/CFS that is measurable and reproducible (post-exertional fatigability of muscles accompanied by intense malaise), and that they disregard the substantial evidence-base of organic pathoaetiology published in peer-reviewed journals, as well as the objective signs and documented symptoms (summarised at http://www.meactionuk.org.uk/magical-medicine.pdf pages 98-214), focusing instead on what they regard as the subjective complaint of fatigue and on patients supposed cognitive distortions. They insist that this heterogeneous group of fatigued people must be uniformly managed by cognitive behavioural therapy (CBT) and graded (aerobic) exercise therapy (GET). The aim of these psycho-behavioural interventions is to convince patients including those with ME/CFS -- that they do not suffer from an organic disorder but are simply deconditioned secondary to inactivity, "symptom focusing" and "hypervigilance to normal bodily sensations" (asserted to be curable by cognitive restructuring in order to disabuse ME/CFS patients of the aberrant belief that they have an on-going physical disease), together with incremental aerobic exercise to strengthen their deconditioned muscles. There is no evidence of deconditioning in ME/CFS; on the contrary, as long ago as 2001, Bazelmans et al demonstrated that deconditioning is not a factor in ME/CFS (Psychol Med 2001:31:107-114.) and this was confirmed by Sargent et al the following year (Med Sci Sports Exerc 2002:34:1:51-56). Notwithstanding, the MRC PACE Trial, designed and executed by Professors White, Sharpe and Wessely, is predicated on their assumption that ME/CFS patients are decondtioned, and upon their belief that the post-exertional incapacitating fatigability of ME/CFS falls within the continuum of normal, everyday tiredness. They believe this tiredness to be no different in character from the fatigue experienced by otherwise healthy individuals, but that ME/CFS patients respond to it inappropriately by resting too much, focusing on being tired, and by attributing it to a non-existent physical disease process. The PACE Trial literature states explicitly that ME/CFS can be cured by the application of cognitive behavioural therapy and/or graded exercise therapy; Professor Michael Sharpe has stated There is evidence that psychiatric treatment can be curative (British Medical Bulletin 1991:47:4:989-1005) and Professor Peter White has asserted recovery from CFS is possible following CBT.Significant improvement following CBT is probable and a full recovery is possible (Psychother Psychosom 2007:76(3):171-176). From their prolific publications about ME/CFS, it is clear that the UK Wessely School, and indeed its American and Continental counterparts, have no interest in what has been described by a leading US Professor of Psychology who specialises in ME/CFS as diagnostic accuracy (Jason L et al. JCFS 1999:5:3-33). Continues in part 2 below.