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DSM5 - Ticket back to Reevesville

Discussion in 'Action Alerts and Advocacy' started by Khalyal, Feb 12, 2010.

  1. shrewsbury

    shrewsbury member

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    Peter Kemp to CO-CURE today

    Comment to APA on DSM-5
    Permission to repost

    Dear All,

    Below is my comment provided to the APA.

    Best Wishes,
    Peter Kemp

    Dear Members of the APA DSM-V Review Panel,

    Re: Concerns regarding any move to categorize Chronic Fatigue Syndrome (CFS) as a Functional Somatic Syndrome.

    This matter presents numerous issues of scientific accuracy, vested interests, professional credibility and public trust which I imagine others will raise with the panel, so I will address issue of Gender Prejudice which I believe is relevant.

    I note with interest that the DSM website states (1):

    "…the Gender and Cross-Cultural Study Group has tried to determine whether the
    diagnostic categories of mental illness in DSM need changes in order to be sensitive to the
    various ways in which gender, races and culture affect the expression of symptoms."

    I find it troubling that the APA appear to consider it appropriate to lump together Gender and Cross-Cultural issues. There may be some cultural issues that include aspects of gender, but purely gender issues are nothing to do with cross-cultural issues and laws protecting equality in these matters are separate, as they should be. It would be ridiculous if people living in a civilized democracy considered any gender prejudice they encountered to be automatically associated with culture rather than originating from outdated discriminatory attitudes. By appointing a Study Group that apparently combines these completely different issues the APA seem to be guilty of such an attitude.

    The US Dept of Health and Human Services states: "Women are four times as likely as men to develop CFS" (2). This raises the question of discrimination which I believe the panel should respond to.

    E.g.; Dr Peter Hudgson was a Consultant Neurologist at the Newcastle General Hospital and stated on camera (3):

    "I don't know what M.E. is, but what I'm absolutely certain is, it is not an organic illness. I don't want to make too much of the sexist issue, but, er, something like four-fifths if not more of the people I deal with are women in early middle age who have unsatisfactory marriages; who have children that are making life difficult for them…"

    Disregarding the contradictions in these remarks they appear to reflect a prejudice that I believe underlies the attitude of some who seek to psychologise CFS.

    Of the many people with CFS that I know personally only a small percentage fit the stereotype that Dr Hudgson had to 'deal with'. Yet so entrenched is this stereotype of the 'nervous housewife' that I find this prejudice is widespread.

    Johnson (4) remarks on an interview with the CDC's Larry Schonberger:

    "It was apparent Schonberger believed that the entity his division would go on to name "cfs" was less a disease than a manifestation of depression in women… Doctors who saw patients, even Harvard docs like Anthony Komaroff, were anathema to Schonberger and his staff; such doctors were rendered unreliable by their bias in favor of the disease existing. Agency staff considered clinical expertise equivalent to clinical ignorance: after all, if you thought depressed, hysterical women had an organic disorder that required medical attention, how credible could you be?"

    Prejudice against women in the medical professions is nothing new and is, I suspect, so normalized as to make rational thinking about women's health issues nigh impossible for male-dominated institutions. I do not mean this as a criticism even though this is clearly an unsatisfactory situation; I am simply referring to what is practically feasible.

    I do not think it necessary that the review panel comprise 80% women to match the percentage of women diagnosed with CFS; but I do consider it essential that at least 50% of any panel considering this item for the DSM should be women. It would be sexist to convene a panel that did not adequately represent the views of women. Classifying CFS as a somatization disorder would lead to people with CFS being re-diagnosed as neurotically somatizing rather than suffering from a debilitating illness with an as yet, incompletely elucidated etiology. Whether the APA like it or not, this would be viewed as, and may in fact be - sexual stereotyping.

    The fact that men are also diagnosed with CFS does not obviate the gender issue, it may rather contribute to it by obscuring the psychological issues of those who seek to subjugate women. It is possibly noteworthy that in the Middle Ages, depending on region, between 5% and 25% of people tried for witchcraft were men. This does not alter that fact that the persecution of witches was a gender crime.

    If those whose vested interests lie in categorizing CFS as a mental illness succeed in swaying the APA, I believe this would be viewed as sexist judgment against women. If such a judgment were passed by a male dominated panel this would be completely unacceptable.

    Peter Kemp MA (Counselling and Psychotherapy Research)



    REFERENCES
    1. http://www.dsm5.org/Newsroom/Documents/Race-Gender-Ethnicity Release FINAL 2.05.pdf Accessed April 2, 2010

    2. http://www.womenshealth.gov/faq/chronic-fatigue-syndrome.cfmAccessed April 2, 2010

    3. http://www.youtube.com/user/hoofbags#p/u/18/cDeu_OlMivU Accessed April 2, 2010

    4. http://www.oslersweb.com/blog.htm?post=660837 Accessed April 2, 2010
  2. oerganix

    oerganix Senior Member

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    How refreshing that one Peter Kemp can see the elephant in the room.
  3. Sing

    Sing Senior Member

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    New England
    What about making this thread a Sticky?

    Let's keep this thread near the top of the list. What about a Sticky?

    Here is another great sample letter, this time from the head of VT CFIDS. He has given me permission to link to their site, where you can see this letter. http://www.vtcfids.org/dsm5.html

    Public comments end on April 20th!

    Sing
  4. Dreambirdie

    Dreambirdie work in progress

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    Yes Sing, making this thread a sticky would be a great idea. Could someone do that, please?

    I think we need to rally our forces to get as many people as possible to write in about this.
    We have less than two weeks to do so. I have enlisted 7 so far. And will see who else I can come up with.
  5. oerganix

    oerganix Senior Member

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  6. markmc20001

    markmc20001 Guest

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    dsm-5 task force (classification of mental disorders that may encompass cfs)

    http://www.cfids.org/advocacy/2010/dsm5-statement.pdf

    a psychiatriatry association is trying to get a new set of criteria set up that may potentially negatively affect what catagory CFS folks fall into.

    I wrote them a lette asking them to rethink. I see this as being a potentially harmful situation for CFS'rs
  7. starryeyes

    starryeyes Senior Member

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    Thank you Mark. This is a very important issue that can affect all of us and many generations of PWC to come.
  8. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    CFIDS Association of America submission in DSM-5 public review process

    The Diagnostic and Statistical Manual for Mental Disorders (DSM) is
    being revised by the American Psychiatric Association for release in
    2013. Creation of a new category called "Complex Somatic Symptom
    Disorder" has generated concern and the CFIDS Association submitted its
    statement on April 1:

    http://www.cfids.org/advocacy/2010/dsm5-statement.pdf

    The APA will accept public comments until April 20 at
    http://www.dsm5.org/Pages/Default.aspx


    The CFIDS Association of America
    Working to make CFS widely understood, diagnosable, curable and
    preventable

    ---------------------------------------------
    Send posts to CO-CURE@listserv.nodak.edu
    Unsubscribe at http://www.co-cure.org/unsub.htm
    Too much mail? Try a digest version. See http://www.co-cure.org/digest.htm
    ---------------------------------------------
    Co-Cure's purpose is to provide information from across the spectrum of
    opinion concerning medical, research and political aspects of ME/CFS and/or
    FMS. We take no position on the validity of any specific scientific or
    political opinion expressed in Co-Cure posts, and we urge readers to
    research the various opinions available before assuming any one
    interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
    link to our complete archive of posts as well as articles of central
    importance to the issues of our community.
    ---------------------------------------------
  9. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    In the UK, still awaiting copy of submission by:

    Action for M.E. (has confirmed intention to submit)
    ME Research UK (might submit)
    Invest in ME (has confirmed intention to submit)

    AYME (no response received, CEO currently on compassionate leave)
    The Young ME Sufferers Trust (no response received at all)

    25% ME Group (has published submission - see 25% ME Group website)

    ME Association (has stated that the organisation does not see any justification for submitting a response at this point - instead, has said that it endorses a response submitted on a personal basis by Dr Ellen Goudsmit. No intention, apparently, by either party, to publish a copy of that submission)


    Suzy Chapman
  10. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    http://www.cfids.org/advocacy/2010/dsm5-statement.pdf

    The CFIDS Association of America submission in DSM-5 public review process

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


    The CFIDS Association of America


    April 1, 2010

    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 an open 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.

    The CFIDS Association strongly questions the utility of the proposed rubric of complex somatic symptom disorder (CSSD). According to the DSM-5 website (http://www.dsm5.org/Documents/Somatic/APA Somatic Symptom Disorders description January29 2010.pdf, accessed March 28, 2010):

    [Criteria superceded by third draft May 2, 2012]


    The creation of CSSD appears to violate 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 March 28, 2010). This is especially true with regard to patients coping with conditions characterized by unexplained medical symptoms, or individuals 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. Yet, all of the case definitions 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, and by virtue of the lack of widely available objective clinical tests sensitive and specific to its characteristic symptoms, CFS patients may also meet criterion B-4.

    As drafted, the criteria 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.

    To provide another common example, back pain that is debilitating and severe, with negative MRIs, is still debilitating and severe back pain. A patient in this situation might be concerned about this back pain, might view it as detrimental to his quality of life and livelihood, and might direct time and resources to seeking care from multiple specialists (e.g., neurology, rheumatology, orthopedics, rehabilitation) to relieve it. Each of these specialists is likely to recommend slightly different therapies, compounding the patients focus on alternative explanations for and long-term impact of decreased function and diminished health. Such a patient could be diagnosed with CSSD, yet no empiric evidence has been provided by the Somatic Symptoms Disorders Work Group that applying the label of CSSD will facilitate communication with the patient, add clinical value to the patients experience, or improve the care any of these various specialists might provide.

    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/ProposedRevisions/Pages/proposedrevision.aspx?rid=368#, accessed March 28, 2010), further limiting the usefulness of this classification in a manual written primarily for the benefit of mental health professionals.

    The Somatic Symptoms Disorders Work Group conveys considerable uncertainty about the impact of this new label, in spite of the charge to all DSM-5 work groups to demonstrate the strength of research for the recommendations on as many evidence levels as possible. The Somatic Symptoms Disorders Work Group states:

    "It is unclear how these changes would affect the base rate of disorders now recognized as somatoform disorders. One might conclude that the rate of diagnosis of CSSD would fall, particularly if some disorders previously diagnosed as somatoform were now diagnosed elsewhere (such as adjustment

    2

    disorder). On the other hand, there are also considerable data to suggest that physicians actively avoid using the older diagnoses because they find them confusing or pejorative. So, with the CSSD classification, there may be an increase in diagnosis." (http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368#, accessed March 28, 2010)

    The proposed 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) as "somatic presentations of mental disorders." None of the research and/or clinical criteria for chronic fatigue syndrome published since 1988 have 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. The role of infectious agents in the onset and/or persistence of CFS has received renewed attention since the DSM-5 revision process began in 1999. Most recently, the October 2009 report of evidence of a human retrovirus, xenotropic murine leukemia-related retrovirus (XMRV), in CFS patients in Science (Lombardi, 2009) has generated new investigations into this and other infectious agents in CFS.

    The conceptual framework for CFS detailed in the "Clinical Working Case Definition, Diagnostic and Treatment Protocols" (Carruthers, 2003) serves as a useful tool for professionals to establish a diagnosis of CFS, address comorbidities that may complicate the clinical presentation and distinguish CFS from conditions with overlapping symptomotology. Research on CFS continues to explore and document important biomarkers. Lack of known causation does not make CFS or the CFS patients illness experience psychopathological any more than multiple sclerosis, diabetes, or other chronic illnesses with objective diagnostic measures, would be so considered.

    For the reasons stated above and the general failure of the proposed creation of the CSSD 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 CSSD.

    Sincerely,

    K. Kimberly McCleary

    President & CEO

    The CFIDS Association of America

    3
  11. oerganix

    oerganix Senior Member

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    Looks good to me. Thank you CAA! And thank you Suzy for all the work you've done on this!
  12. Jerry S

    Jerry S Senior Member

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    Chicago
    Yes. And the CAA referenced the Canadian Consensus Criteria. Thank you CAA and Suzy!
  13. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Thank you oerganix and Jerry S.

    I have just PM'd Jennie Spotilia and asked her to pass on my thanks to CFIDS for their well received response in the DSM-5 public review process.

    ICD-11

    The Alpha Draft for ICD-11 is scheduled for 10 May 2010. This will have more relevance for those countries using ICD-10.

    Some diseases, disorders and syndromes will have content populated according to the ICD Revision "Content Model" - see ICD Revision document:

    http://dxrevisionwatch.files.wordpress.com/2009/12/content-model-style-guide-27-01-101.doc

    But it's not yet known whether definitions might be included for the classifications currently coded in ICD-10 at G93.3 or how much other content might be included for PVFS, (Benign) ME and Chronic Fatigue Syndrome or whether Chronic fatigue syndrome is going to be included in Volume 1: The Tabular List, in ICD-11. (At the moment it is included only in Volume 3: The Alphabetical Index, indexed to G93.3)

    ICD-11 is timelined for dissemination in 2014/15. But the US won't be moving onto ICD-11.

    The US currently uses a Clinical Modification based on ICD-9. But instead of moving onto ICD-11, once the revision of ICD-10 has been completed, the US will be implementing a Clinical Modification of ICD-10 called ICD-10-CM, in October 2013.

    There are disparities between some of the proposed codings for the forthcoming US Clinical Modification and those in the current ICD-10 as used in the UK and other countries: for example, the classification and codings for Postviral fatigue syndrome, (Benign) myalgic encephalomyelitis and Chronic fatigue syndrome differ between ICD-10 and the current proposed codings and classifications for the forthcoming US ICD-10-CM.

    Resources for US Clinical Modification:

    CDC site: International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM)

    The 2010 update of ICD-10-CM is now available and replaces the July 2009 version.
    For current proposals for US modification ICD-10-CM see:

    http://www.cdc.gov/nchs/icd/icd10cm.htm
    http://www.cdc.gov/nchs/icd/icd10cm.htm#10update

    Although this release of ICD-10-CM is now available for public viewing, the codes in ICD-10-CM are not currently valid for any purpose or use. The effective implementation date for ICD-10-CM (and ICD-10-PCS) is October 1, 2013. Updates to this version are anticipated prior to implementation of ICD-10-CM.

    You can see what codes are proposed for ICD-10-CM in the document above or here:

    Current proposals for US modification ICD-10-CM see:
    http://en.wikipedia.org/wiki/History_of_chronic_fatigue_syndrome#ICD-10-CM

    Current proposals for the US Clinical Modification ICD-10-CM, scheduled for implementation in October 2013, propose classifying Chronic fatigue syndrome at R53.82.

    According to the American Psychiatric Association (APA) 10 December News Release:

    "APA will continue to work with the WHO to harmonize the DSM-5 with the mental and behavioral disorders section of the ICD-11. Given the timing of the release of both DSM-5 and ICD-11 in relation to the ICD-10-CM, the APA will also work with the CDC and CMS to propose a structure for the U.S. ICD-10 CM that is reflective of the DSM-5 and ICD-11 harmonization efforts. This will be done prior to the time when the ICD-10-CM revisions are 'frozen' for CMS and insurance companies to prepare for the October 1, 2013, adoption."

    With the three systems: DSM-5 (ETA now May 2013), ICD-10-CM (not yet frozen with implementation in October 2013) and ICD-11 (dissemination in 2014+) set to become more closely aligned, the proposed structure of ICD-11 may have implications for US patient populations, even though the US might not anticipate moving on to ICD-11 (or a CM version of ICD-11) for many years.

    So I shall be posting information about ICD-11 as more becomes available here and on my Dx Revision Watch site.

    Suzy
  14. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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  15. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    The American Psychiatric Association (APA) DSM-5 draft proposals are open for public review and comment until 20 April.

    I am collating submissions on a dedicated page on my Dx Revision Watch site.

    Patient organisations, professionals and patient advocates submitting comments in the DSM-5 draft proposal review process are invited to provide copies of submissions for publication on this page http://wp.me/PKrrB-AQ.

    If you would like your submission published or to alert me to the submission of a patient organisation or professional, please contact PM or via the Dx Revision Watch site contact box.

    Submissions published to date to the DSM-5 Work Group for revision of the catergories currently classified in DSM-IV under "Somatoform Disorders" include:

    The CFIDS Association of America
    Vermont CFIDS Association
    IACFSME
    The 25% ME Group (UK)

    and a number of patient advocate responses including the submission of Dr Mary Schweitzer.

    Submissions anticipated from:

    Action for M.E. (UK)
    Invest in ME (UK)
    ESME
    WPI


    To register with the APA in order to make a submission go here:

    http://www.dsm5.org/ProposedRevisions/Pages/SomatoformDisorders.aspx

    For information on making submissions see this posting:

    http://www.forums.aboutmecfs.org/sh...k-to-Reevesville&p=48972&viewfull=1#post48972

    Suzy Chapman
  16. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    I'm really glad to see the CAA responding on behalf of CFS patients. Yay! :victory: Thanks to you to Suzy for all of your hard work on this and for keeping us up-to-date and informed.
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    Pretty good submission from CAA. I especially applaud mention of the Canadian Criteria!! Keep up the good work and the signature line will come down. :Retro smile:
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    It's great everyone is writing in. This is very important.

    I just want to clarify that the current version of DSM (DSM IV-TR) and the new proposed language for the next version (DSM 5) do not specifically classify 'CFS' or ME as a mental illness. Both are bad though. Basically, as Malcolm Hooper's and CAA's submissions note, the new version is trying to psychopathologize those who disagree with the psychiatric view of 'CFS' and ME/CFIDS patient activists.

    Edit: Simon Wessely has vomited up his usual nonsense at a DSM working group- saying that the integrity of 'functional somatic syndromes such as...chronic fatigue syndrome' should be maintained. This is obvious code from him that everyone should still consider 'CFS' to be somatization. 'Functional somatic syndrome' is the general medical analogue to 'somatization' in psychiatry.

    Additionally, at least a couple of the committee members have published their belief that 'CFS' is BS including Michael Sharpe of the infamous Sharpe/Oxford definition of 'CFS' which is the foundation upon which most of our persecution is built.

    Plus the new DSM category definition is atrocious by any measure, so it is very important that everyone write in to oppose it.
  19. Esther12

    Esther12 Senior Member

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    Regardless of whether CFS is affected or not, it's still terribly designed. Considering they explicitly said that they do not want the diagnosis to be based upon a negative, the safeguards they've come up with against this are insane. Even if CFS was specifically excluded, I'd still want to write in - although might lack quite the same motivation.
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    I agree. I have edited my comment above to clarify.

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