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Article: Coalition4ME/CFS Puts Out Call For Action on DSM-5 Proposal

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jun 2, 2011.

  1. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    I put the following out on Co-Cure, yesterday:

    [CO-CURE] Act: Final push: We have till Wednesday to get comments in on DSM-5 draft criteria

    May be reposted

    From Suzy Chapman for http://dxrevisionwatch.wordpress.com

    13 June 2011

    "So basically, they're dumping some little-used, contentious and unpopular categories in a big bucket and stirring them up. The resulting mud could well end up sticking to us!"

    If you only do two things online this week make it these:

    1] Register to submit feedback via the DSM-5 Development website, here, and submit a letter of concern - however brief: http://tinyurl.com/Somatic-Symptom-Disorders

    2] If you know an informed and sympathetic clinician, allied health professional, lawyer, educator or social worker, contact them today and urge them to review these criteria and to submit a response as a concerned professional, or ask your state ME/CFS organization to submit a response.

    The closing date for comments in the second DSM-5 public review is Wednesday, June 15.

    How many subscribers are there to this Co-Cure mailing list?

    A couple of thousand?

    And there are over 4,500 members of Phoenix Rising Forums. These usually very active forums are currently offline. Please use the time and energy you might have spent on Phoenix Rising to submit a comment.

    We have the potential for several thousand more responses over the next three days.

    OK, the APA issued no prior announcement of its intention to bring forward this second public review of draft criteria and so patient groups could not be alerted in advance. But alerts went out on May 5, the day after the latest criteria were posted on the DSM-5 Development site.

    Nevertheless, many international patient organizations have been slow off the mark and some have been lukewarm about the need to submit, this year, or to submit, at all.

    I've been banging on about the implications for these proposals for ME and CFS patients for two years, now, but where are the responses from our international patient organizations to these latest proposals?

    Over two years ago, on May 13, 2009, I first reported on Co-Cure that the conceptual framework the DSM-5 Work Group for "Somatic Symptom Disorders" were proposing would:

    "...allow a diagnosis of somatic symptom disorder in addition to a general medical condition, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome." [1]

    ("Somatic" means "bodily" or "of the body".)

    The most recent version of the "Disorders description" document states:

    "This group of disorders is characterized predominantly by somatic symptoms or concerns that are associated with significant distress and/or dysfunction...Such symptoms may be initiated, exacerbated or maintained by combinations of biological, psychological and social factors."

    "These disorders typically present first in non-psychiatric settings and somatic symptom disorders can accompany diverse general medical as well as psychiatric diagnoses. Having somatic symptoms of unclear etiology is not in itself sufficient to make this diagnosis. Some patients, for instance with irritable bowel syndrome or fibromyalgia would not necessarily qualify for a somatic symptom disorder diagnosis. Conversely, having somatic symptoms of an established disorder (e.g. diabetes) does not exclude these diagnoses if the criteria are otherwise met."

    "The symptoms may or may not be associated with a known medical condition. Symptoms may be specific (such as localized pain) or relatively non-specific (e.g. fatigue). The symptoms sometimes represent normal bodily sensations (e.g., orthostatic dizziness), or discomfort that does not generally signify serious disease."

    Psychiatric creep

    The APA appears hell bent on colonising the entire medical field by licensing the potential application of a mental health diagnosis to all medical diseases and disorders, if the clinician decides that the patient's (or in the case of a child, a parent's) response to their bodily symptoms and concerns about their health are "excessive", or their perception of their level of disability "disproportionate", or their coping styles "maladaptive."

    While the media has focussed on the implications for introducing new additions and broadening definitions of existing DSM diagnostic criteria, there has been no media scrutiny of these Work Group proposals nor recognition that this Work Group has been quietly redefining DSM's "Somatoform Disorders" categories with proposals that will have the potential for a bolt-on diagnosis of a "somatic symptom disorder" for all medical diseases, whether "established general medical conditions or disorders", like angina or diabetes, or conditions presenting with "somatic symptoms of unclear etiology."

    Yet these radical proposals for renaming the "Somatoform Disorders" category "Somatic Symptom Disorders" and combining a number of existing, little-used categories under a new umbrella term, "Complex Somatic Symptom Disorder (CSSD)", and the more recently proposed "Simple Somatic Symptom Disorder (SSSD)", have the potential for bringing thousands more patients under a mental health banner and expanding markets for psychiatric services, antidepressants and behavioural therapies such as CBT, for the "modification of dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors" for all patients with somatic symptoms, irrespective of cause.

    Sitting ducks

    CFS, ME, Fibromyalgia and IBS patients are likely to get caught by these proposals.

    CFS and ME patients already diagnosed or waiting for a diagnosis (which might take months or years) would be especially vulnerable to the highly subjective criteria and difficult to measure concepts like "disproportionate distress and disability", "catastrophising", "health-related anxiety" and "[appraising] bodily symptoms as unduly threatening, harmful, or troublesome", this Work Group is proposing.

    Other patient groups also bundled under the so-called "Functional somatic syndromes" and "medically unexplained" umbrellas, like Chemical Injury (CI), Chemical Sensitivity (CS), chronic Lyme disease and Gulf War Illness, would also be highly vulnerable to a CSSD label.

    These proposals could potentially result in misdiagnosis of a mental health disorder, misapplication of an additional diagnosis of a mental health disorder, misapplication of "rehabilitation" therapies like GET or in iatrogenic disease.

    Families would be at risk of wrongful accusation of "over-involvement" or "excessive" concern for a child's symptomatology or of encouraging "sick role behaviour" in a child or young person.

    Application of these vague and highly subjective criteria may have considerable implications for the diagnoses assigned to patients, for the provision of social care, payment of employment, medical and disability insurance and the length of time for which insurers are prepared to pay out.

    The application of a diagnosis of CSSD may limit the types of treatment, medical investigations and testing that clinicians are prepared to consider and which insurers are prepared to fund.

    International implications

    This is not a US centric issue. The DSM is used to a varying extent in other countries in clinical settings. DSM criteria are currently used more often for research purposes than ICD-10 and the next edition will shape international research, influence literature in the fields of psychiatry and psychosomatics and inform perceptions of patients' medical needs throughout the world.

    Please make use of these last three [now two] days to tell the APA why the SSD Work Group needs to rip up these proposals and start over again.


    Proposed criteria are set out on the DSM-5 Development site here: http://tinyurl.com/Somatic-Symptom-Disorders

    The CSSD criteria are here: http://tinyurl.com/DSM-5-CSSD

    More information on registration and preparing submissions here: http://tinyurl.com/DSM-5-register-to-comment

    For examples of last year's submissions, go here: http://wp.me/PKrrB-AQ

    Copies of this year's submissions are being collated on my site, here: http://wp.me/PKrrB-19a

    If you are a patient organization, professional, patient, carer or advocate and have already submitted and would like a copy of your comment added to my site, please send a copy to me.agenda@virgin.net

    Submissions published to date for this second public review: [Added to since publication]

    IACFS/ME (US);
    ME Free For All.org (UK);
    The Young ME Sufferers Trust (UK);
    Coalition4ME/CFS (US);

    Angela Kennedy, sociology lecturer (UK);
    Dr John L Whiting MD, (Australia);

    Mary Barker (US);
    Peter Kemp (UK);
    Mary M. Schweitzer Ph.D., (US)


    [1] "The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV - a preliminary report" was published in the June 2009 issue of the Journal of Psychosomatic Research. The journal is co-edited by DSM-5 Work Group members, Prof Francis Creed and Dr James Levenson. Full free text: http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

    [2] There are two key PDF documents: "Disorders Descriptions" and "Rationale", which expand on the Work Group's proposals:

    Suzy Chapman
  2. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    I have no confirmation from Invest in ME or the 25% ME Group, whether either org intends to submit, this year.

    CFIDS has confirmed to me that it intends to submit.

    ME Association submission to the consultation on the revision of the American Diagnostic and Statistical Manual of Mental Disorders


    June 13, 2011

    The ME Association has submitted the following comments to the consultation on the proposed, new American Diagnostic and Statistical Manual of Mental Disorders, otherwise known as the DSM-5?. Our contribution was officially acknowledged on Sunday (June 12) at 10.52am.

    The ME Association is a UK based medical charity that provides information and support for people with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome).

    The concerns we express below refer to the proposal to create a new and wide-ranging psychiatric category Complex Somatic Symptom Disorder (CSSD) in the next edition of the American Diagnostic and Statistical Manual of Mental Disorders (ie DSM V) and the widespread belief that people with ME and CFS may become included in this new medical terminology.

    ME is recognised by the World Health Organisation (in section G93:3 of ICD 10) and by the UK Department of Health as a complex neurological disorder a fact that is now supported by numerous published research studies.

    CFS, which includes a wider group of clinical presentations, is indexed to the WHO neurological classification.

    It is not therefore appropriate to use the proposed terminology of CSSD either by intention or mistake to describe or classify people with ME or CFS as having somatic presentations of mental health disorders in any other system of disease classification or explanation such as the DSM.

    This proposal itself has a number of major flaws, including:

    A very limited and partial scientific rationale with too much reliance on subjective judgements.

    An implied acceptance that diagnoses are always correct.

    An assumption that all that is important in psychological medicine is already known and what remains uncertain can be summarised in one new clinical entity.

    Psychological Medicine already attracts a lot of negative criticism and this proposal will only make matters worse.

    The APA therefore needs to reflect on its full responsibilities when reviewing a subject area as complex and uncertain as this.

    We therefore suggest that you drop CSSD and instead refer to chronic distress that may be related to psychological or physical events or a combination. This is a term that should lead to empathetic, focused management.

  3. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Submission by the European ME Alliance (EAME)

    European ME Alliance (EMEA) submission to DSM-5 draft proposals Submission to the American Psychiatric Association on DSM-V Complex Somatic Symptom Disorders category

    June 2011


    The European ME Alliance consists of 11 European national charities/non profit organisations campaigning for better diagnosis and understanding of myalgic encephalomyelitis (ME or ME/CFS) as defined by WHO-ICD-10-G93.3.

    Even though we are not mental health professionals or represent people with mental health disorders we feel it important to comment on the draft proposal of DSM-V and its Complex Somatic Symptom Disorders proposal.

    This response should be seen against the backdrop of the devastation caused by the misinformation within the medical profession regarding ME/CFS and the promotion of false perceptions about the disease to the public, healthcare authorities and government.

    It is of paramount importance that the American Psychiatric Association are aware of the dangers inherent in establishing incorrect categories of disorders which are based on poor science, vested interests or which do not serve the patients. It is the patients who must surely be the priority in all healthcare provision.

    We are especially concerned about the criteria described in the new category of Complex Somatic Symptom Disorder which seems to imply that anyone who has a chronic or incurable illness with somatic symptoms and misattributes their symptoms could be given this label.

    Who decides when someone misattributes their pain or fatigue?

    How are these symptoms measured?

    How long and vigorously is a patient allowed to complain about their symptoms before a doctor can decide to investigate further and determine if a headache is a brain tumour or irritable bowel syndrome colon cancer?

    In the CSSD Criteria B there are terms used which are subjective and not measurable such as health concerns and catastrophising.

    Based on our collective experiences with the treatment of an organic illness such as ME/CFS experiences across Europe our concern is that there is a great danger of mis- or missed diagnoses when looking at this category and its proposed diagnostic criteria.

    The criteria are very vague and allow too much subjectivity.

    In fact, ME/CFS could mistakenly be placed in this category if one were to ignore, or be unaware of, the huge volume of biomedical research and evidence which shows it to be an organic illness and if one were to use only the broad CSSD criteria to diagnose.

    Such an action would be a major and costly mistake and would not serve the patients or the healthcare communities.

    In our experience specialist ME/CFS clinics get as many as 40% of patients referred with a ME/CFS diagnosis who turn out to have other very serious and sometimes fatal illnesses.

    The patients we are concerned with suffer from myalgic encephalomyelitis which is a neurological disease. Yet all too often these patients are being treated as if they had a somatoform illness.

    Parents of children with ME/CFS are restricted in visiting their severely ill children in hospital or worse still the children are taken away from their families as the healthcare professional believes it is the family that is keeping the child ill by having wrong illness beliefs.

    Severely ill grown ups with this disease are denied normal medical care and threatened with being placed in mental hospitals if they are too ill to care for themselves and ask for help.

    This not only sets patient against healthcare professional but also is a waste of resources and of lives.

    A broad unspecific category such as the proposed Complex Somatic Symptom Disorder does not help patients who need an honest and clear diagnosis.

    Any illness lacking a diagnostic test is in danger of being put into this non specific category which helps no one.

    We hope and request that the APA listens to patients and avoids creating a category of mental illness that is meaningless.

    Yours Sincerely,

    The Chairman, Board and Members of the European ME Alliance


    PDF version: http://www.euro-me.org/GB/EMEA Letter to APA - DSM-V.pdf

    Membership of EMEA: http://www.euro-me.org/about.htm
  4. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Submission by IACFS/ME (The International Association for Chronic Fatigue Syndrome/ME) (US based)

    Dear Members and Colleagues:

    I have submitted the comments below to the DSM-5 Work Group on Somatic Symptom Disorders. We are very concerned about the proposed new diagnosis, Complex Somatic Symptom Disorder, and its potential influence on physicians who see patients with CFS/ME.

    Thank you.


    Fred Friedberg, PhD


    To the DSM-5 Somatic Symptoms Disorders Work Group:

    On behalf of the board of directors and the membership of the International Association for Chronic Fatigue Syndrome (IACFS/ME), I would like to express my deep concern about the proposed new category of Complex Somatic Symptom Disorder (CSSD) in DSM-5 scheduled for release in 2013.

    The Work Groups well-reasoned points about DSM-IV somatoform disorders that they are little used, confusing, and pejorative do call for a re-evaluation. The question is: What should replace them? The new inclusive CSSD category attempts to offer a simplified and more inclusive diagnosis that may be more user-friendly to physicians and other health practitioners.

    Our major concern is that the logic behind the new CSSD category is not informed by empirical data that directly examines the utility of this diagnosis in medical practice.

    As stated by your Work Group: A key issue is whether the guidelines for CSSD describe a valid construct and can be used reliably. Predictive validity of most of the diagnostic proposals has not yet been investigated.

    Given the absence of scientific validation of the CSSD diagnosis, the potential for unintended consequences is a serious concern. One such consequence is the possibility of over-diagnosis that may selectively affect patients with illnesses that are already not well understood such as CFS/ME. If the treating practitioner is skeptical about the severity or even existence of CFS/ME, then the new criteria can be used to diagnose CSSD without reference to an underlying illness.

    For instance, the CSSD criteria of (2) Disproportionate and persistent concerns about the medical seriousness of ones symptoms and (3) Excessive time and energy devoted to these symptoms or health concerns, would allow practitioners skeptical of CFS/ME to diagnosis the illness as an Axis I psychiatric disorder. This new psychological diagnosis may then narrow the physicians focus and reduce the possibility of more effective management of the CFS/ME illness. Furthermore, the CSSD diagnosis may result in additional stigma for already marginalized patients with CFS/ME.

    Over-diagnosis with CSSD may also arise from the broad generality of the new criteria and the absence of clear thresholds for patients to meet the criteria. As with somatization/somatoform disorders, when different criteria are used population prevalence varies from less than 1% for somatization disorder to an astonishing 79% for undifferentiated somatoform disorder (cited from Work Group online document). Arguably, the generality of the criteria for both undifferentiated somatoform disorder and CSSD suggests that CSSD may become a much more common (and potentially misapplied) diagnosis than the somatic symptom disorders that it replaces.

    Finally, the CSSD diagnosis will not inform the clinician of CFS/ME-specific issues such as adverse reactions to treatment that are more likely in this hypersensitive population. By contrast, the CFS/ME diagnosis is useful for an array of illness related concerns that will assist the clinician in providing care for these medically under-served patients.

    Given the above considerations, we ask that the CSSD diagnosis be omitted from DSM-5. Only when the proper validation studies are done that consider vulnerable populations such as CFS/ME can we know if the use of the CSSD diagnosis has clinical value. In its current form, we believe that the new diagnosis will do more harm than good.

    Thank you.

    Fred Friedberg

    Fred Friedberg, PhD

    27 N. Wacker Drive, #416
    Chicage, Illinois 60606
  5. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Submission by UK advocate, Kevin Short

    I am concerned that the American Psychiatric Associations (APA) mental health guidelines may be manipulated towards ends that have little to do with the best interests of patients or the psychiatric profession as a whole. I write with regard to the ongoing upgrade of the Diagnostic and Statistical Manual of Mental Disorders that is due for publication as DSM-5 in 2013. Specifically, with the proposed new category of Complex Somatic Symptom Disorder (CSSD)

    The full text is available online as a PDF at:

  6. Nielk


    Thank you ISO and Suzie for all the information and links made available to us.
    I was not aware of how corrupt this system is. Than again, it would be foolish to think that it isn't because just reading the proposal for CSSR made my stomach churn.

    I sent to them on their website my letter as a patient with my concerns but, I would be naive to think that it would have any weight.
    it seems from reading the links that it is judged based on a count of hands of the Psychiatrists attending the meeting.

    I know that they seem to give us a chance to write in but I am even skeptical that they waste their time to read it.

    Thanks for all your hard work to raise awareness about this problem!
  7. Liz


    Atlanta, GA
    Thank you AGAIN, Phoenix Rising for giving CFS patients a voice. I posted a letter to the ASA -- it is only one of many, but I hope they get the point.
  8. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    CFIDS Response

    Blog post


    APA Requests Comments on Proposed DSM-5 RevisionsPolicy Matters | 14. Jun, 2011 by Kim McCleary

    According to the American Psychiatric Association, the Diagnostic and Statistical Manual of Mental Disorders (DSM) is the standard classification of mental disorders used by mental health professionals in the United States and contains a listing of diagnostic criteria for every psychiatric disorder recognized by the U.S. healthcare system. The current edition, DSM-IV-TR, is used by professionals in a wide array of contexts, including psychiatrists and other physicians, psychologists, social workers, nurses, occupational and rehabilitation therapists, and counselors, as well as by clinicians and researchers of many different orientations (e.g., biological, psychodynamic, cognitive, behavioral, interpersonal, family/systems). It is used in both clinical settings (inpatient, outpatient, partial hospital, consultation-liaison, clinic, private practice, and primary care) as well as with community populations. In addition to supplying detailed descriptions of diagnostic criteria, DSM is also a necessary tool for collecting and communicating accurate public health statistics about the diagnosis of psychiatric disorders. (http://www.dsm5.org/about/Pages/Default.aspx)

    The DSM is currently being revised through a lengthy and labor-intensive process that began in 1999. Publication of the fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in May 2013 will mark one the most anticipated events in the mental health field. As part of the development process, the preliminary draft revisions to the current diagnostic criteria for psychiatric diagnoses are now available for public review. We thank you for your interest in DSM-5 and hope that you use this opportunity not only to learn more about the proposed changes in DSM-5, but also about its history, its impact, and its developers. Please continue to check this site for updates to criteria and for more information about the development process.

    There has been relatively little coverage of the DSM-5 process in the mainstream media. The few reports have focused on the medicalization of a growing number of personality disorders and classification of risky sexual behaviors, as described by Shari Roan in a series of articles in the Los Angeles Times. The process has its fans and critics, even within the field of psychiatry. Dr. Frances Allen is the chairman of the DSM-IV Task Force and is quoted in the Los Angeles Times,

    Allen says the many advances in neuroscience, brain imaging and molecular biology have yielded valuable information about the workings of the human brain but not enough to make psychiatric diagnoses. Thus, he said, there is little to be gained by changing the DSM now.

    The experts are well-meaning each suggestion made has the goal of identifying patients currently missed, Allen said. But, he added, none of the changes can accurately identify patients who are in real need of help from normal people with everyday problems who would be better left alone.

    Many organizations that engage with communities potentially affected by proposed DSM changes have activated their constituencies. For instance, criteria for autism spectrum disorders are being reworked, prompting questions from parents, professionals and advocates.

    One major change proposed to the DSM-5 involves the creation of a new set of conditions referred to as Somatic Symptom Disorders. Among the work groups recommendations is the proposal to rename this category Somatic Symptom Disorders. Because the current terminology for somatoform disorders is confusing and because somatoform disorders, psychological factors affecting medical condition, and factitious disorders all involve presentation of physical symptoms and/or concern about medical illness, the work group suggests renaming this group of disorders Somatic Symptom Disorders. While chronic fatigue syndrome (CFS) is not named among the conditions being swept into this category, the criteria for diagnosis of SSD and its subtypes may hinder, rather than help, the response individuals with CFS receive from medical and mental health professionals. It has prompted concerns and action from many within the CFS community.

    The CFIDS Association submitted its concerns about the first proposal for Complex Somatic Symptom Disorder on April 1, 2010 and responded to a second opportunity to submit comments on the latest revisions to SSD and new subtypes identifed by the work group on June 14, 2011. Many other organizations and individuals concerned about these changes have submitted comments as well. Advocate Suzy Chapman has collated comments at her site.

    The APA has set June 15, 2011 as the deadline for this round of responses to its latest set of proposals. Registration on the DSM-5 site (www.dsm5.org) is required in order to submit comments, but there are no other requirements such as having a professional affiliation or organizational connection.


    Letter to APA

    PDF: [also attached at end of post]


    The CFIDS Association of America

    Working to make CFS widely understood, diagnosable, curable and preventable

    June 14, 2011

    DSM-5 Task Force

    American Psychiatric Association

    1000 Wilson Boulevard Suite 1825 Arlington, VA 22209

    Members of the DSM-5 Task Force,

    In response to the most recent request for input on proposed changes to the fifth revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM), the CFIDS Association of America submits the following statement and urgent recommendation.

    Consistent with our comments submitted April 1, 2010, the CFIDS Association strongly questions the utility of the proposed rubric of Somatic Symptom Disorders (SSD) and the subtypes of Complex Somatic Symptom Disorder (J00), Illness Anxiety Disorder (J02) and Functional Neurological Disorder (J03). Rather than improving upon the designation of CSSD after the close of the 2010 comment period, it appears that the working group has made this category even more problematic in the latest revision.

    It is again noted that the updated proposal for DSM-5 revision correctly does not identify chronic fatigue syndrome (CFS) as a condition within the domain of mental disorders and the DSM. However, past discussions of the Somatic Symptoms Disorder Work Group have included such physiological disorders as chronic fatigue syndrome, irritable bowel syndrome and fibromyalgia (http://www.dsm5.org/Research/Pages/SomaticPresentationsofMentalDisorders(September6-8,2006).aspx, accessed June 13, 2011) as "somatic presentations of mental disorders." None of the research and/or clinical criteria for chronic fatigue syndrome published since 1988 has established CFS as a mental disorder and a continuously growing body of literature demonstrates CFS to be a physiological disorder marked by abnormalities in the central and autonomic nervous systems, the immune system and the endocrine system. Research published in the last year has provided strong evidence of molecular and cellular markers that may make definitive diagnostic testing possible. Summaries of recent findings are regularly updated here: http://www.research1st.com/promising-cfs-research-findings/.

    Based on the rationale statement (http://www.dsm5.org/Documents/Somatic/DSM Validity Propositions 4-18-11.pdf, draft dated April 18, 2011, accessed June 13, 2011), the proposed construct of SSD and its subtypes appears to serve a single purpose to increase demand for cognitive behavioral therapies the treatment identified in the statement as having the most promise for treating conditions that may fall under the new descriptor. Its as if the Work Group is suggesting a "Dont worry be happy" approach to individuals who appear more concerned about their health than this particular group of professionals thinks they should be, without regard to what focus on health may be warranted by diminished function and quality of life, or what attention may be essential to obtaining appropriate care in todays fractured and disconnected medical delivery system.

    According to the DSM-5 website
    (http://www.dsm5.org/ProposedRevision/Pages/SomaticSymptomDisorders.aspx) accessed June 13, 2011):

    To meet criteria for CSSD, criteria A, B, and C are necessary.

    A. Somatic symptoms:

    One or more somatic symptoms that are distressing and/or result in significant disruption in daily life.

    B. Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least two of the following are required to meet this criterion:

    (1) High level of health-related anxiety.

    (2) Disproportionate and persistent concerns about the medical seriousness of one's symptoms.

    (3) Excessive time and energy devoted to these symptoms or health concerns.*

    C. Chronicity: Although any one symptom may not be continuously present, the state of being symptomatic is chronic (at least 6 months).

    For patients who fulfill the CSSD criteria, the following optional specifiers may be applied to a diagnosis of CSSD where one of the following dominates the clinical presentation:

    XXX.1 Predominant somatic complaints (previously, somatization disorder)

    XXX.2 Predominant health anxiety (previously, hypochondriasis). If patients present solely with health-related anxiety with minimal somatic symptoms, they may be more appropriately diagnosed as having Illness Anxiety Disorder.

    XXX.3 Predominant Pain (previously pain disorder). This classification is reserved for individuals presenting predominantly with pain complaints who also have many of the features described under criterion B. Patients with other presentations of pain may better fit other psychiatric diagnoses such as adjustment disorder or psychological factors affecting a medical condition

    The creation of SSD and its subtypes violates the charges to DSM-5 Work Groups to clarify boundaries between mental disorders, other disorders and normal psychological functioning (http://www.dsm5.org/about/Pages/faq.aspx, accessed June 13, 2011). This is especially true with regard to patients coping with medical conditions that presently lack a mature clinical testing regimen that provides the evidence required to substantiate the medical seriousness of their symptoms. For instance, all of the case definitions for CFS published since 1988 have required that in order to be classified/diagnosed as CFS, symptoms must produce substantial impact on the patients ability to engage in previous levels of occupational, educational, personal, social or leisure activity. All of the case definitions (for adults) require six months of illness and rely on patient report as evidence of the disabling nature of symptoms, rather than results of specific medical tests. So by definition, CFS patients will meet the CSSD criteria A and C for somatic symptoms and chronicity.

    As drafted, the criteria in b. "Excessive thoughts" for CSSD establish a "Catch-22" paradox in which six months or more of a single or multiple somatic symptoms surely a distressing situation for a previously active individual is classified as a mental disorder if the individual becomes "excessively" concerned about his or her health. Without establishing what "normal" behavior in response to the sustained loss of physical health and function would be and in the absence of an objective measure of what would constitute excessiveness, the creation of this category poses almost certain risk to patients without providing any offsetting improvement in diagnostic clarity or targeted treatment, with the exception of a blanket recommendation for cognitive behavioral therapy.

    The rationale document refers to the Whiteley Index for grading severity of these behaviors, but the document does not contain any data from study of the prevalence, duration or severity of the attributions in conditions that may possibly be subject to differential diagnosis with subtypes of SSD. It fails to establish "normal" levels or meaningful cutoffs for interpreting what should be considered "excessive" or "disproportionate" or "persistent." There are blanks left in the current version of the document for the "impact of different thresholds for criteria B- from Francis" but it is unclear what type of survey or study is linked to this vague reference. It is also unclear whether Francis will be able to provide data about these thresholds specific to known medical conditions that still lack definitive diagnostic tests, those which have a positive prognosis or those uncertain long-term outcomes (because of the lack of longitudinal studies). Making any judgments on the basis of a single classification of all known medical conditions is certainly problematic, if not detrimental to the stated purposes for revising the DSM criteria.

    The Somatic Symptoms Disorder Work Group states that patients fitting these criteria are generally encountered in general medical settings, rather than mental health settings (http://www.dsm5.org/Documents/Somatic/DSM Validity Propositions 4-18-11.pdf, accessed June 13, 2011), further limiting the usefulness of this classification in a manual written primarily for the benefit of mental health professionals.

    In its latest draft of the rationale for these changes, the Somatic Symptoms Disorders Work Group has provided confusing language and recommendations regarding evaluation of SSD in the context of conditions that are characterized by ?medically unexplained symptoms:

    "Medically unexplained symptoms are 3 times as common in patients with general medical illnesses, including cancer, cardiovascular and respiratory disease compared to the general population (OR=3.0 [95%CI: 2.1 to 4.2] (Harter et al 2007). This de-emphasis of medically unexplained symptoms would pertain to somatization disorder, hypochondriasis, undifferentiated somatoform disorder, and pain disorder. We now focus on the extent to which such symptoms result in subjective distress, disturbance, diminished quality of life, and impaired role functioning."

    The recommendations go on to state that:

    "This is a major change in the diagnostic nomenclature, and it will likely have a major impact on diagnosis. It clarifies that a diagnosis of CSSD is inappropriate in the presence of only unexplained medical symptoms. Similarly, in conditions such as irritable bowel syndrome, CSSD should not be coded unless the other criterion (criterion Battributions, etc.) is present."

    However, given the lack of appropriate training to professionals in medical and mental health settings about the diagnosis of conditions that rely on patient report and subjective measures (rather than well-recognized signs and uniform objective measurements) and the lack of effective treatments, the degree to which criteria b. behaviors might be evaluated and warranted has not been reported by the Work Group.

    For the reasons stated above and the general failure of the proposed creation of the SSD and its subtypes to satisfy the stated objectives of the DSM-5 without risking increased harm to patients through confusion with other conditions or attaching further stigma, the CFIDS Association strongly urges the DSM-5 Task Force to abandon the proposed creation of SSD and its subtypes.


    K. Kimberly McCleary

    President & CEO

    The CFIDS Association of America

    Attached Files:

  9. Sing

    Sing Senior Member

    New England
    I posted my letter today, June 15th, on the DSM site and sent a copy to ME Agenda. Today is the last day for comments to be submitted, so I hope everyone who is able to will make
    this effort. It is very important for the politics of this disease and the future of research and our care!

  10. richvank


    Hi, all.

    This is what I just sent to the APA and to Suzy:

    Dear APA:

    I have been conducting research and consulting on cases of what has been called myalgic encephalomyelitis/chronic fatigue syndrome for the past 15 years. As a result of this experience, there is no question in my mind that this disorder has an organic, physiological basis and is not a mental illness. While patients suffering from this disorder may indeed experience anxiety and major concern about their illness, and may devote full-time effort to attempting to regain their health, which appear to be the suggested criteria for the proposed "Complex Somatic Symptom Disorder," it seems to me that these are perfectly normal responses to having an illness that is not well understood by the medical establishment and for which the suggested treatments are only cognitive behavioral therapy and antidepressants, which provide limited help at best. I suggest that a person who had ME/CFS and did not respond in some of these ways would truly be in need of psychiatric help. My concern is that this proposed new category of mental illness could very easily be applied to sufferers of ME/CFS, to their detriment. Once a patient is labeled as having a psychiatric disorder, physicians by and large cease to consider organic, physiological causes for their illness. While this may increase the number of office visits to psychiatrists, it would be a major disservice to these patients. Please reject this vaguely worded diagnosis.

    Best regards,

    Richard A. Van Konynenburg, Ph.D.

    Independent Researcher and Consultant on Cases of
    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
  11. glenp

    glenp "and this too shall pass"

    Vancouver Canada suburbs

    I copied a template letter and sent it - wasnt able to get a good letter together myself, so did the best I could

  12. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Well done glen, Sing, Rich and all. I'll be adding all comments sent to me to my site this evening and tomorrow.

    Here is the submission by the Danish ME/CFS Association (who have Per Fink to contend with):

    The Danish ME/CFS Association would hereby like to comment on the draft proposal of DSM-V.

    In Denmark, psychiatrists are already incorrectly using the terms somatoform disorder and functional somatic syndrome as synonyms for ME/CFS, Fibromyalgia, IBS, whiplash, migraine and others. In fact it has been proposed that these illness and 5 others be placed under a single category. We are therefore extremely concerned that the proposed category of Complex Somatic Symptom Disorder could become a catch-all category for these illnesses that will encourage doctors to give a psychiatric diagnosis and thus ignore the biological basis of these diseases.

    As a patient group in Europe we wholeheartedly support the comments submitted by the European ME Alliance (EMEA) to the American Psychiatric Association on DSM-V Complex Somatic Symptom Disorders category: http://www.euro-me.org/news-Q22011-003.htm

    Three quotes from EMEAs statement that we would like to emphasize are:

    'We are especially concerned about the criteria described in the new category of Complex Somatic Symptom Disorder which seems to imply that anyone who has a chronic or incurable illness with somatic symptoms and 'misattributes' their symptoms could be given this label.'

    'ME/CFS could mistakenly be placed in this category if one were to ignore, or be unaware of, the huge volume of biomedical research and evidence which shows it to be an organic illness and if one were to use only the broad CSSD criteria to diagnose. Such an action would be a major and costly mistake and would not serve the patients or the healthcare communities.'

    'We hope and request that the APA listens to patients and avoids creating a category of mental illness that is meaningless.'

    On behalf of the Danish ME/CFS Association board,

    Sincerely yours,

    Rebecca Hansen, chairman
  13. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Here is the submission from ESME:

    The board of ESME (European Society for Myalgic Encephalomyelitis) wishes to express its concern over the proposed category of Complex Somatic Symptom Disorder.

    Myalgic Encephalomyelitis (ME), is a potentially severe and chronic multi-system illness, commonly triggered by a virus infection, of which a key symptom is post-exertional malaise. It has been classified as a neurological condition by the WHO since 1969 and carries the code G93.3. Since the 1980s, ME has also been called Chronic Fatigue Syndrome and it is under this name, that ME has commonly been mistaken for a somatoform disorder. It is our experience that giving an ME patient a psychological diagnosis of somatoform disorder, or functional somatic syndrome, has severe consequences for the patient, as their biological illness is then ignored. This also leads to patients being treated with psycho-pharmaceuticals, exercise therapy and other inappropriate and potentially harmful treatments.

    The parents of children with ME are often blamed for the childs illness by doctors and psychiatrists who do not understand the biological basis of ME. We feel that the category of Complex Somatic Symptom Disorder would only increase this problem as it takes focus away from the childs physical symptoms and places them on the reaction to the illness. The diagnosis of Complex Somatic Symptom Disorder can be given if the parents of a young child express:

    Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least two of the following are required to meet this criterion:

    (1) Disproportionate and persistent concerns about the medical seriousness of ones symptoms.
    (2) High level of health-related anxiety
    (3) Excessive time and energy devoted to these symptoms or health concerns

    If a doctor or psychiatrist does not understand the biological basis of a disease, it then becomes very difficult, if not impossible, to determine what amount of worry is disproportionate or excessive.

    The board of ESME feels that the adoption of the umbrella term, Complex Somatic Symptom Disorders, would increase the risk of ME patients receiving a psychological misdiagnosis, therewith increasing the risk of neglect or direct physical harm to this patient group. We therefore strongly advise against the creation of the vague category, Complex Somatic Symptom Disorders.

    Sincerely yours,

    The Board of the European Society for ME
  14. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    My husband is threatening to put in a submission to the DSM-5 that he has had no cake for a fortnight.
  15. *GG*

    *GG* senior member

    Concord, NH
    How does a person navigate the site, I am looking for where I need to submit my comments!


    PS Thanks!
  16. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Go to


    Register (top right). A password will be sent to you by email.

    Log in.

    Go to


    (for CSSD)

    When logged in, a WYSIWYG editor will display at the foot of the Criteria.

    This should take C & P from a draft in the body of an email. Some folk have reported problems with pasting from Word docs or have switched to uploading via Firefox.

    If it's a brief comment, you could type it straight in.

    On successful upload, you will be sent a confirmation email.

    If you hit problems let me know and I'll see if I can assist.

  17. *GG*

    *GG* senior member

    Concord, NH
    Thanks for this info, I was starting to past my comment under unspecified or something to that effect!

  18. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    OK, as I end this post, it's coming up for 03:40 AM Eastern Daylight Time, and I assume that the APA's public review period has now closed...

    ...however, I logged in 30 minutes ago and the uploading editor was still displaying, so if anyone wants to try and get a late submission in, give it a go.

    I have a number of submissions to publish on my site, this morning, from patients.

    In the UK, we are still waiting for Action for M.E. to issue their submission (they had confirmed that they would submit). Nothing from Invest in ME or the 25% ME Group yet - but I've had no clarification, this year, about whether they intended to submit.

    I also need to add the CFIDS submission to my site. As the page is getting rather long, I'll probably split it over two pages.

    If further patient org submissions come to my attention I shall add them to my site and also to this thread. If you know of a patient org or professional who has published a submission that I haven't yet collated, please let me know. I don't know whether MassCFIDS submitted, again, this year.

    Any further DSM-5 related material will be added to the original DSM-5 thread to prevent the topic becoming fragmented over several threads. I have some material to post in the next few days about field trials and other DSM-5 stuff.

    What happens now?

    On the day after the first public review closed, the APA issued a news release - nothing issued yet. Last year, the APA said they had received aound 6,500 submissions across the 13 Work Groups and Task Force. This was subsequently revised to 8,000. I doubt they will have received as many, this year, partly due to the lack of notice but also intertia. There are, however, a number of patient groups who are very organized.

    I shall continue to monitor the DSM-5 Development site for any revisions to criteria and edits to the text of the two key documents following this second public review and the field trials - I don't anticipate any edits for several weeks, but will keep you informed.

    There is a third public review Timelined for early next year:

    "January-February 2012: Revised draft diagnostic criteria will be posted on www.dsm5.org and open to a third public feedback period for two months. Feedback will be shared directly with work group members, and further edits to proposals will be made as needed."

    I submitted two responses, yesterday, one of which was some general points in the Overall Comments section for the attention of the Task Force, in which I grumbled about the lack of prior notice for this second public review, among other issues.

    I hope I can give folk better notice, next year.

    By January 2012, the ICD-10-CM partial code freeze will have been implemented - I don't know to what extent the Work Groups will be making changes to the drafts for each section of DSM-5, after Chapter 5 of ICD-10-CM has been "frozen".

    So now we wait to see what, if any, changes are made to current proposals.

    To those of you who have submitted comment or have contacted patient groups and professionals and raised awareness on other platforms - a big thank you!

  19. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    I shall probably put a post out on Co-Cure in the next few days thanking patient orgs, professionals, patients and advocates for submitting.

    But I shall be making the point that if patient orgs delay submitting until a day or two before the closing date, or submit but don't place a copy of their submission in the public domain until after the review period has ended, then their members and their wider constituencies don't have an opportunity to endorse the response of a patient org or quote from their submission in their own submissions or circulate their submission as part of awareness raising campaign.

  20. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    The National ME/FM Action Network submission

    Lydia E. Neilson, M.S.M. , Founder
    Chief Executive Officer

    For the attention of the Somatic Symptom Disorders Work Group :

    The National ME/FM Action Network works on behalf of Canadians with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia. Our organization was founded in 1993 and has many accomplishments to its credit. A leading accomplishment was spearheading the development of the Canadian Consensus diagnostic and treatment protocols for ME/CFS and Fibromyalgia. These criteria are receiving strong international support. Another major accomplishment was publishing statistics on these conditions. Our analysis, based on a major Statistics Canada survey, showed that there were 628,500 Canadians diagnosed with one or both of these conditions in 2005 and that they experienced high degrees of disability, disadvantage and unmet needs in comparison with other chronic illness cohorts.

    Diagnostic criteria are very important. DMS-5 will be used to determine who qualify for psychiatric services. Criteria are problematic if they result in false negatives (people who do not qualify for services but who would benefit from them) or false positives (people who qualify for services do not benefit from them). We are concerned the proposed new category for Chronic Somatic Syndrome Disorder (CSSD) will result in an unacceptable number of false positives in the ME/FM community.

    A fundamental question is how psychiatry can help patients with ME/CFS and Fibromyalgia.

    Some psychiatrists have proposed Cognitive Behaviour Therapy as a treatment for Chronic Fatigue Syndrome. A recent UK study examined the benefits of CBT for patients with CFS. Patient groups have pointed out numerous issues around the study design and how study population was selected and would reject the study as badly flawed. However, even taking the study at face value, the study showed that CBT was of minor benefit to patients, akin to the benefits of CBT for other chronic illnesses. CBT does not get to the heart of the illness. ME/CFS and Fibromyalgia are not psychiatric disorders.

    Our position on the role of psychiatry is simple and clear. We think that psychiatry should play the same role for ME/CFS and Fibromyalgia patients as it does for patients with other chronic physical illnesses like cancer, diabetes or arthritis. Those patients receive psychiatric support if and only if psychiatric issues are apparent after medical and social supports in place. We would like to refer you to a document entitled Assessment and Treatment of Patients with ME/CFS; Clinical Guidelines for Psychiatrists by Dr. Eleanor Stein, a Canadian psychiatrist. This document describes an appropriate role for psychiatrists in assessing and treating ME/CFS, respecting the reality of the illness.

    Over the years, we have heard many stories from patients with ME/CFS or Fibromyalgia who went to a doctor for help only to be fobbed off to a psychiatrist because the family doctor did not believe their symptoms or did not know how to help, rather than because the patient needs psychiatric services. This situation does not help patients it denies their experiences, it undercuts their credibility and it distracts from their real issues. This situation does not help psychiatry either as it is called upon to solve problems that it cannot solve.

    The new Complex Somatic Syndrome Disorder category could compound this situation. A patient with ME/CFS or Fibromyalgia would get a diagnosis of CSSD if a doctor believes the patient is overreacting to the illness, even if the patient is actually behaving very rationally. The patient would be labelled with a undeserved, unhelpful and misleading psychiatric label which would make dealing with the core health issues even more difficult than they already are.

    The CSSD category could be very harmful to patients with ME/CFS and Fibromyalgia. We ask you to refrain from including CSSD in DMS-5 in the absence of protections to ensure that patients with ME/CFS and Fibromyalgia do not receive false positive diagnoses.

    Margaret Parlor

    512 - 33 Banner Road
    Nepean, ON K2H 8V7 Canada
    Tel. 613.829.6667
    Fax 613.829.8518

    Email: mefmaction@ncf.ca


    SEPTEMBER 22 - 25, 2011

    For details on agendas and registration, please visit:

    Member of www.iacfsme.org

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