1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

DSM5 - Ticket back to Reevesville

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

  1. creekfeet

    creekfeet Sockfeet

    Messages:
    553
    Likes:
    2
    Eastern High Sierra
    DSM5 Public Review & Comment: Demand no Psych diagnosis for CFS/ME!

    EDIT: Please delete this thread. I didn't realize that all of this info was already in the DSM5: Ticket Back To Reevesville thread. So this one is redundant and could be round-filed. Thanks!

    An ALERT from IACSFME: the American Psychiatric Association is currently considering classifying CFS/ME under somatoform disorders. Public comment will be accepted by the APA here until April 20.
  2. creekfeet

    creekfeet Sockfeet

    Messages:
    553
    Likes:
    2
    Eastern High Sierra
    The IACFSME Alert, in case you have trouble following that link above...

  3. creekfeet

    creekfeet Sockfeet

    Messages:
    553
    Likes:
    2
    Eastern High Sierra
    Dr. Friedberg's Letter to the APA in response to DSM5:

  4. creekfeet

    creekfeet Sockfeet

    Messages:
    553
    Likes:
    2
    Eastern High Sierra
    Oops, I didn't realize that the whole comment-period thing, plus IACFSME's alert, were already being reported and discussed here. Guess I've had my head up my socks. Anyhow, my thread on this can be trashed as it's redundant.
  5. Esther12

    Esther12 Senior Member

    Messages:
    5,254
    Likes:
    5,430
    “The absence of a medical explanation [for an illness] should not confer automatic psychiatric labeling (Sept.6-8, 2006; Somatic Presentations of Mental Disorders; DSM-5 Work Group).”

    I think this is key for me.

    I'm fine with being classed as psychologically disturbed if they've indentified some unreasonable belief or thought process I have - but to class people as psychologically ill because their blood tests come back negative is just quackery.
  6. creekfeet

    creekfeet Sockfeet

    Messages:
    553
    Likes:
    2
    Eastern High Sierra
    Yeah, that's the sentence I found myself wanting to slide my highlighter over, too. So clear.
  7. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,795
    Likes:
    521
    UK
    US and international patient organisation submissions to DSM-5 draft proposals

    There are already two threads for DSM-5, with a separate thread started for the Williams/Hooper submission, so I'm posting in an existing thread. If there is a separate thread for collating submissions which I haven't spotted, I'll shift it over. I am also collating submissions on my web site. A version of this posting was published on Co-Cure, Action for M.E. Facebook and WPI Facebook, yesterday.


    US and international patient organisation submissions to DSM-5 draft proposals


    The DSM-5 public review period closes on 20 April - that's less than four weeks away.

    Patient representation organisations, clinicians, researchers, allied health professionals, patient advocates and other stakeholders can register online at www.dsm5.org to submit responses.


    US patient organisation submissions:


    CFSIDS: The March issue of CFIDSLink-e-News reports that the CFIDS Association of America is seeking input from outside experts into the DSM-5 public review process. Their notice can be read here:
    http://www.cfids.org/archives/2006-2010-cfidslink/march-2010.asp#advocacy

    WPI: The Whittemore Peterson Institute has announced on its Facebook site that it intends to submit a response:
    http://www.facebook.com/pages/Whittemore-Peterson-Institute/154801179671


    International patient organisation submissions:

    IACFSME: The IACFSME has issued an alert for international CFS and ME clinicians, researchers and professionals and has published a copy of the organisation's own submission in the DSM-5 public review process. Their notice and submission can be read here:
    http://www.iacfsme.org/Home/tabid/36/Default.aspx

    ESME: ESME (International Society for ME) has stated on its Facebook site that its Think Tank panel members will submit a response which will be posted on ESME's website and on ESME's Facebook page:
    http://www.facebook.com/pages/ESME-European-Society-for-ME/326113349124


    If readers are aware of other US organisations, international organisations or professionals who have stated that they intend to submit responses, please let me know as I am collating these on my site.


    UK patient organisation submissions:

    On 4 March, I contacted senior personnel of seven national UK patient and research organisations. All were sent key links and documents relevant to the DSM-5 Somatic Symptom Disorders Work Group proposals. (These organisations had also been sent selected DSM revision related material during the course of the past twelve months so all will have been aware of the impending release of draft proposals for DSM-5.)

    They were all asked if they would clarify whether they intended to submit a response to the DSM-5 draft proposals for revision of DSM-IV categories currently classified under "Somatoform Disorders" and if so, whether they intended to publish their submission.

    Those organisations which had not responded by 22 March were contacted again. These are the replies so far to my enquiries:

    The Young ME Sufferers Trust: No reply received.

    AYME: No reply received.

    Invest in ME: Invest in ME has confirmed that it does intend to submit a response and that it will be publishing its response.

    ME Research UK: Neil Abbott has said that it is uncertain whether resources will run to producing a response, but if a response is put together on behalf of MERUK, then this would be made publicly available.

    Action for M.E.: On 25 March, in a telephone conversation, Action for M.E.'s Policy Officer was unable to confirm what Action for M.E.'s intentions are. The Policy Officer was asked to follow this up with Sir Peter Spencer (CEO) and Heather Walker (Communications Manager) since neither had responded to my email enquiries.

    Later in the day, Action for M.E. posted on its Facebook Wall that:

    http://www.facebook.com/actionforme

    "Action for M.E. will respond to the American consultation exercise before the 20th April.

    "We will publish our considered response on our website when it has been submitted to the DSM-5 Task force.

    "Action for M.E 's position is that M.E./CFS is a long-term and disabling physical illness. We accept the WHO classification in ICD 10 G93.3 that M.E. is a neurological disorder.

    We will oppose any attempt to classify CFS/M.E. as a psychiatric disorder either explicitly or implicitly."


    25% ME Group: The 25% ME Group has published a 12 page "Submission re: DSM-V and ME/CFS", compiled by Professor Malcolm Hooper and Margaret Williams for submission by The 25% ME Group, dated 20 March 2010:
    http://www.25megroup.org/News/DSM-V submission.doc


    The ME Association: Neil Riley, Chair of the ME Association Board of Trustees, provided me with the following information:

    That a response had already been submitted to the DSM-5 on 11 February.
    That the response was submitted not by the ME Association but by Dr Ellen Goudsmit, PhD.
    That the ME Association endorses Dr Goudsmit's submission.
    That the ME Association "had not thought of publishing it and wanted to see what the final proposals for the revision of the DSM categories will be but [Mr Riley] can confirm that the main argument put forward was that CFS should be an exclusion."

    In response to a request for further clarification, Mr Riley wrote:

    "As you are aware the DSM-5 draft proposals relate to proposed psychiatric categories and this is a specialised field for which professional advice was best sought. As you know CFS and ME are not in the current draft for DSM-5. A comment was submitted related to another disorder (CSSD) which may be considered by some clinicians as an additional diagnosis on the axis e.g. affecting outcome of CFS. This was not a response to the text on CFS but challenged the robustness of a proposed psychiatric disorder."

    "The current text in the draft '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 B-attributions, etc) is present.' Without diagnostic tests to determine whether attributions are correct (cf criterion B), our recommendation is that to avoid confusion, CFS should be an exclusion."

    Mr Riley added:

    "If a future draft mentions CFS, a formal response on behalf of the MEA is justified and will be published in full online."

    Other than the comments contained in Mr Riley's responses to me earlier this month, the ME Association has been silent on the DSM-5 revision process and its position on the proposals of the Somatic Symptom Disorders Work Group and whether it had intended to submit a response, as an organisation, on behalf of its members.

    Mr Riley's response indicates that the ME Association does not plan to publish a copy of the response which it says it is endorsing, in order to fully inform its membership and the wider ME community of its position on the DSM-5 proposals.

    If you find this unacceptable, please advise the Board of Trustees.

    In June 2009, the ME Association published, on its website only, a "Summary Report" on the CISSD Project* which had been co-ordinated by Dr Richard Sykes, PhD. between 2003 and 2007. This report drew on the content of the December 2007 Final Report on the CISSD Project handed to the project's Administrators, Action for M.E. on completion of the project.

    The ME Association has published no comment or opinion on the aims and objectives of the project, itself, the membership of its workgroup, the content and recommendations contained in the Review paper published by the project's leads, Kroenke, Sharpe and Sykes in mid 2007, or on the "Summary Report" provided to it by Dr Sykes, either at the time that it placed this document on its website, last June, nor since.

    The project's UK chair was Professor Michael Sharpe.


    I will update when I have heard from the remaining three organisations.

    If readers are aware of other UK organisations and professionals who are intending to make a submission, please let me know.


    Related material:

    The DSM-5 proposal is that Somatoform Disorders, Psychological Factors Affecting Medical Condition (PFAMC) and Factitious Disorders should be combined under a common rubric entitled "Somatic Symptom Disorders" and for a new disorder - "Complex Somatic Symptom Disorder (CSSD)".

    The DSM-5 public review period runs from 10 February to 20 April. Members of the public, patient representation organisations, professionals and other end users can submit responses, online.

    Please take this opportunity to comment and to alert and encourage professionals and international patient organisations to participate.




    *Review paper: CISSD Project leads Kroenke K, Sharpe M, Sykes R: Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations. Psychosomatics 2007 Jul Aug;48(4):277-85.
    FREE Full Text: http://psy.psychiatryonline.org/cgi/content/full/48/4/277

    18 Proposals submitted by Dr Richard Sykes to WHO ICD Update and Revision Platform, Topical Advisory Group - Mental Health (TAGMH):
    https://extranet.who.int/icdrevision/GroupPage.aspx?gcode=104

    The paper: Kroenke K: Somatoform disorders and recent diagnostic controversies. Psychiatr Clin North Am 2007 Dec;30(4):593-619:
    http://www.ncbi.nlm.nih.gov/pubmed/17938036 contains the caveat:

    "Although the CISSD is an ad hoc group that includes many international experts on somatoform disorders, it was neither appointed nor sanctioned by the APA or WHO, the organizations authorized to approve revisions of DSM and ICD, respectively. As such, the CISSD recommendations should be considered advisory rather than official. Also, there were some suggestions for which the CISSD achieved near consensus but other issues where opinions diverged considerably."

    ------------------

    Note: An unpublished paper refered to on the DSM-5 site at this URL under "Rationale"

    Complex Somatic Symptom Disorder [Rationale Tab]
    http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368#

    "A key issue is whether the guidelines for CSSD describe a valid construct and can be used reliably. A recent systematic review (Lowe, submitted for publication) shows that of all diagnostic proposals, only Somatic Symptom Disorder reflects all dimensions of current biopsychosocial models of somatization (construct validity) and goes beyond somatic symptom counts by including psychological and behavioral symptoms that are specific to somatization (descriptive validity). Predictive validity of most of the diagnostic proposals has not yet been investigated."

    is thought to be this paper currently "In Press" on the Journal of Psychosomatic Research, for which DSM-5 SDD Work Group member, Frances Creed, is a co-editor. Access to full paper requires subscription or pay per paper:

    Articles in Press
    http://www.jpsychores.com/inpress

    Towards positive diagnostic criteria: A systematic review of somatoform disorder diagnoses and suggestions for future classification
    In Press Corrected Proof , Available online 15 March 2010
    Katharina Voigt, Annabel Nagel, Bjrn Meyer, Gernot Langs, Christoph Braukhaus, Bernd Lwe
    Journal of Psychosomatic Research
    DOI: 10.1016/j.jpsychores.2010.01.015
    Abstract | Full Text | Full-Text PDF (183 KB)

    Abstract
    http://www.jpsychores.com/article/S0022-3999(10)00020-6/abstract

    Towards positive diagnostic criteria: A systematic review of somatoform disorder diagnoses and suggestions for future classification

    Katharina Voigta 1, Annabel Nagel a1, Bjrn Meyer a, Gernot Langs b, Christoph Braukhaus b, Bernd Lwe a
    Received 1 November 2009; received in revised form 12 January 2010; accepted 14 January 2010. published online 15 March 2010. Corrected Proof

    Abstract

    Objectives
    The classification of somatoform disorders is currently being revised in order to improve its validity for the DSM-V and ICD-11. In this article, we compare the validity and clinical utility of current and several new diagnostic proposals of those somatoform disorders that focus on medically unexplained somatic symptoms.

    Methods
    We searched the Medline, PsycInfo, and Cochrane databases, as well as relevant reference lists. We included review papers and original articles on the subject of somatoform classification in general, subtypes of validity of the diagnoses, or single diagnostic criteria.

    Results
    Of all diagnostic proposals, only complex somatic symptom disorder and the Conceptual Issues in Somatoform and Similar Disorders (CISSD) example criteria reflect all dimensions of current biopsychosocial models of somatization (construct validity) and go beyond somatic symptom counts by including psychological and behavioral symptoms that are specific to somatization (descriptive validity). Predictive validity of most of the diagnostic proposals has not yet been investigated. However, the number of somatic symptoms has been found to be a strong predictor of disability. Some evidence indicates that psychological symptoms can predict disease course and treatment outcome (e.g., therapeutic modification of catastrophizing is associated with positive outcome). Lengthy symptom lists, the requirement of lifetime symptom report (as in abridged somatization), complicated symptom patterns (as in current somatization disorder), and imprecise definitions of diagnostic procedures (e.g., missing symptom threshold in complex somatic symptom disorder) reduce clinical utility.

    Conclusion
    Results from the reviewed studies suggest that, of all current and new diagnostic suggestions, complex somatic symptom disorder and the CISSD definition appear to have advantages regarding validity and clinical utility. The integration of psychological and behavioral criteria could enhance construct and descriptive validity, and confers prospectively relevant treatment implications. The incorporation of a dimensional approach that reflects both somatic and psychological symptom severity also has the potential to improve predictive validity and clinical utility.

    Keywords: Classification, Diagnosis, Diagnostic and Statistical Manual of Mental Disorders, International Classification of Diseases, Somatoform disorders, Validation studies as topic

    a Department of Psychosomatic Medicine and Psychotherapy, University Medical Center Hamburg-Eppendorf and Schn Klinik Hamburg-Eilbek, Hamburg, Germany
    b Medical and Psychosomatic Hospital Bad Bramstedt, Bad Bramstedt, Germany
    Corresponding author. Department of Psychosomatic Medicine and Psychotherapy, University Medical Center Hamburg-Eppendorf, Martinistr. 52, 20246 Hamburg, Germany. Tel.: +49 40 7410 59733; fax: +49 40 7410 54975.
    1 Both authors contributed equally to this paper.
    PII: S0022-3999(10)00020-6
    doi:10.1016/j.jpsychores.2010.01.015
  8. Andrew

    Andrew Senior Member

    Messages:
    1,961
    Likes:
    1,226
    Los Angeles, USA
    Here is my letter

    After reviewing the draft for Complex Somatic Symptom Disorder (CSSD), I strongly urge you to remove it as a category that adds to or subsumes previously described somatic disorders. It is so broad that it could easily describe any patient with: a) a doctor who has conducted many tests and b) an undiagnosed physical illness that is debilitating enough for the patient to fear loss of livelihood or quality of life. The CSSD definition's inability to distinguish between a mental disorder and an undiagnosed physical disorder makes it too vague for research. And it offers no clinical advantage because anxiety can be diagnosed and treated regardless of whether a person has a somatic illness.

    The inclusion of Complex Somatic Symptom Disorder can also cause harm. It amounts to a fast and loose approach to placing people into a mental disorder. We have all heard cases of people who were dismissed by a few doctors, and then later found the help they needed. Also, I am very concerned that Complex Somatic Symptom Disorder will become a wastebasket diagnosis for people with controversial illnesses such as Gulf War Syndrome, Chronic Fatigue Syndrome, and Fibromyalgia. I see nothing in the CSSD draft advising doctors to exclude these people.

    As an illustration the type of problem the CSSD can create, please notice that the CSSD draft says that orthostatic dizziness is a "normal body sensation." This may be true in some cases, but it can also be an indication of a serious health issue. And even if routine testing is unrevealing, that doesn't mean a problem is not there. So if a patient is experiencing debilitating levels of orthostatic dizziness, it would be reasonable for him to be very concerned, despite a doctor saying nothing is wrong.

    When defining a somatic disorder, you need to be very careful. You need a definition that requires more than a patient who is tested, undiagnosed, and alarmed. The Complex Somatic Symptom Disorder definition is too broad for research and clinical treatment. And because of its potential for harm, I strongly urge you to remove CSSD from consideration for the DSM-5.

    Sincerely,
  9. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    5
    Well done Andrew. Thank you for this effort.
  10. Esther12

    Esther12 Senior Member

    Messages:
    5,254
    Likes:
    5,430
    I thought that was good. Thanks.

    I know an academic psychologist that I was thinking of speaking to about commenting on this, and I might show them your letter as a starting point.
  11. Andrew

    Andrew Senior Member

    Messages:
    1,961
    Likes:
    1,226
    Los Angeles, USA
    That's a good idea. The Complex Somatic Symptom Disorder can really do us in. They don't even have to mention to hurt us. All they have to do is put us into this vague catch-all category and we will be more marginalized than before. And even forgetting about CFS, this category is still harmful.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Andrew- Very nice letter. You make great points. Thanks for writing in.
    :thumbsup:

    (fwiw- 'somatic' means 'bodily', so when doctors say 'psychosomatic' they mean mind/body (ie code for psychogenic- caused by the mind) and when they say 'somatic disease' they mean a physical disease).
  13. Andrew

    Andrew Senior Member

    Messages:
    1,961
    Likes:
    1,226
    Los Angeles, USA
    Oops. I should know better. I hope they don't stumble over that.
  14. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Somatic means (physically in the body) and Somatization means you're bodily symptoms are psychological right?

    Is the latter one of those made-up words by Reeves btw?

    Thank you for posting which orgs are submitting responses Suzy.

    Thanks for writing your letter Andrew.:Sign Good Job:
  15. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,037
    Likes:
    3,192
    N. California
    I've passed this info along to several therapists I know in hopes that they too will submit a letter. They all have worked with folks who are living with chronic illnesses (one therapist has survived a rare cancer himself), and are sympathetic towards those of us with CFS.

    I'm hoping to get my 2 acupuncturists to write letters as well.
  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,795
    Likes:
    521
    UK
    Action for M.E.

    I've received written confirmation, today, from Action for M.E.'s Policy Officer in response to my emails and follow up phone call on Thursday, 25 March that the unsigned notice (copy below) which was posted last Thursday on Action for M.E.'s Facebook Wall is the "CEO’s holding statement on DSM-5".


    "Action for M.E. will respond to the American consultation exercise before the 20th April. We will publish our considered response on our website when it has been submitted to the DSM-5 Task force.

    "Action for M.E 's position is that M.E./CFS is a long-term and disabling physical illness. We accept the WHO classification in ICD 10 G93.3 that M.E. is a neurological disorder.

    "We will oppose any attempt to classify CFS/M.E. as a psychiatric disorder either explicitly or implicitly."


    --------------------

    Action for M.E. acted as Administrators for the CISSD Project which was co-ordinated by Dr Richard Sykes, PhD, between 2003 and 2007 and chaired by Prof Kurt Kroenke and Prof Michael Sharpe. The review paper published by the Project leads in June 2007 has fed into the DSM-5 and ICD-11 revision processes.

    Review paper: Kroenke K, Sharpe M, Sykes R: Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations. Psychosomatics 2007 Jul Aug;48(4):277-85. FREE Full Text: http://psy.psychiatryonline.org/cgi/content/full/48/4/277
  17. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,795
    Likes:
    521
    UK
    Thank you Andrew for submitting a response and to dreambirdie for alerting professionals. As Andrew says (and as I have been banging on for months, now) this proposal has the potential to hurt many patient populations - CFS, ME, IBS, FM, GWS, CI, CS, SBS, Chronic Lyme and others.

    Andrew, I am in the process of collating submissions from patient organisations, professionals, advocates and patients on a dedicated page on my Dx Revision Watch site. If you would like me to include your submission - let me know.

    Suzy
  18. Andrew

    Andrew Senior Member

    Messages:
    1,961
    Likes:
    1,226
    Los Angeles, USA
  19. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,795
    Likes:
    521
    UK
    Thank you, Andrew, I'll upload it in the next couple of days. I'll refer to you as "Andrew, US patient advocate" unless you'd prefer "US patient advocate" or something else.
  20. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    Vermont CFIDS Association's Response to DSM-5

    Vermont CFIDS Association's Response to DSM-5
    |
    Pat Sonnett posted this to CO-CURE today

    Please see the Vermont CFIDS Association's response to the DSM-5 reclassification of CFS as a somatoform disorder at:
    http://www.vtcfids.org/dsm5.html

    [if: thought I'd post this both so we know that Vermont has done their bit + in case there are facts etc to help people with their own submissions. Highlights for me:

    title 'First Do No Harm'

    "Researchers at both the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) have documented the physiological and pathophysiological underpinnings of this illness. The CDC, under the leadership of Julie Gerberding, launched a multi-million-dollar campaign within the past few years to underscore that CFS is a multi-system disorder which can and should be treated as such.

    Based upon the numerous, peer-reviewed studies that have linked CFS to infection and multiple organ systems abnormalities, classifying CFS as a Complex Somatic Symptom Disorder seems unreasonable and unwarranted.

    As estimated and communicated to you by the IACFS/ME: Over the past 25 years, 2,000 peer-reviewed CFS studies have been published. The data support a multifactorial condition characterized by disturbances in HPA function, upregulated antiviral pathways in the immune system, and genetic abnormalities. Unlike clinical anxiety and depression, psychotropics are generally ineffective for CFS and standard medical advice to exercise and rest or resume activities often lead to symptom worsening. In contrast to clinical depression, motivation is much less affected in CFS and the desire to be active remains intact."]

    The deadline for filing responses is April 20th, so time is of the essence! We all need to make our voices heard on this issue. Thank you Rik Carlson for bringing it to our attention once again.

    As the IACFS previously reminded us in an earlier posting, "We urge you to submit your comments about this disturbing possibility to the DSM-5 Task Force ( www.dsm5.org <http://cts.vresp.com/c/?IACFSME/4f88106407/7d7fd57d40/b7cb8f79a9>). You only need to register on this website to submit your comments. (_Once you have a login, click on Proposed Revisions, and then Complex Somatic Symptom Disorder. At the bottom of page is a section for public comments._) "

    -

See more popular forum discussions.

Share This Page