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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. Phoenix Rising Team

    Phoenix Rising Team

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  2. Lynn

    Lynn Senior Member

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    I think this is a great idea. Could one of our more articulate patients post their comments here so that the foggy can copy and paste them onto the CSSD page?

    Unfortunately, I count myself in the foggy category right now or I would do it.

    Lynn
  3. Cort

    Cort Phoenix Rising Founder

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    Good point Lynn. I will provide examples of letters that orgs have sent out. Thanks to MEAgenda for providing links to them on her website.

    COALITION LETTER

  4. Cort

    Cort Phoenix Rising Founder

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    The CFIDS Association of America Response http://www.cfids.org/advocacy/2010/dsm5-statement.pdf

  5. Cort

    Cort Phoenix Rising Founder

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    Mass CFIDS/ME Association Response

  6. Cort

    Cort Phoenix Rising Founder

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    Dr. Alan Gurwitt - Former Psychiatrist and Pres of Mass CFIDS

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  7. Enid

    Enid Senior Member

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    Good letters Cort - especially one from a Distinguished Fellow of the American Psychiatric Association (whose doubts we all share). Will do my bit tomorrow.
  8. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Readers please note that the CFIDS and MassCFIDS responses that Cort has posted are examples of last year's submissions - not from this year.

    There is a new page opened on my site for this year's responses. It is currently empty.

    2010 submissions: http://wp.me/PKrrB-AQ

    2011 submissions: http://wp.me/PKrrB-19a

    UK org, Action for M.E., confirmed yesterday that they are intending to submit again, this year, but as yet, no other UK orgs have confirmed.

    Have you found PR's response from last year, yet, Cort? I would be happy to add it to the others on my site.

    I am pleased to see that this coaliton of 8 US orgs has now put out a "Call to Action", but it is a pity that this could not have been issued earlier.

    My alert and call for action for the second public review period was posted here, on Co-Cure and on my site on 5 May.

    There are now only 13 days left.

    Why is the American Psychiatric Association referred to in the Coalition4ME/CFS's materials as the "ASA"?

    I have copies of last year's submissions on my site for:

    International patient organisation submissions:

    Whittemore Peterson Institute, Steungroep CFS Netherlands, CFS Associazione Italiana, ME Association (endorsed submission of Dr E Goudsmit), Action for M.E., Invest in ME, Mass. CFIDS/ME & FM, The CFIDS Association of America, Vermont CFIDS Association, IACFSME, The 25% ME Group

    Patient advocate submissions:

    Suzy Chapman UK (2), Tammie Page M.A. US, Patient advocate US, John Mizelle, Therapist US, Peter Kemp UK, Ian McLachlan UK, Andrew US, Mary M. Schweitzer PhD US



    Suzy Chapman
    me.agenda@virgin.net
    http://dxrevisionwatch.wordpress.com
    http://meagenda.wordpress.com
  9. Nielk

    Nielk

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    Should we try to get some Doctors who specialize in ME/CFS to write letters to them too?
    I would think that along with all these organizations, coalitions and patients letters, the voice of MDs could add more credence.

    Do you think, in addition that a petition-like letter signed by many patients would help. I would think that it might take too much energy for some patients to do this on their own but if all they have to do is sign it, it would make it much easier for them.

    Thanks for doing this Cort. I think that this is major!.

    Nielk
  10. Enid

    Enid Senior Member

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    I'd be very happy to sign anything we could draw up in the time too Nielk. Lots of voices here if energies allow.
  11. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    No, I don't think petitions would be acceptable to the APA. The process for submitting responses is via individuals registering on the DSM-5 Development site to upload an individual comment.
  12. PANDORA

    PANDORA PANDORA

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    APA DSM5 - PANDORA ALSO SUBMITTED INPUT IN 2010

    Here is PANDORA 2010 letter to APA on DSM5

    In addition through our urging Shelley Foote, a clinical psychologist who is associated with the Dade County Psychological Association (DCPA)...shared with PANDORA last year: "Had our DCPA full-day meeting and I am wiped out but I wanted to tell you, despite missing DSM-5' theoretical deadline, I have over 25 letters signed by psychologists expressing their disagreement and disapproval of the CSSD category.I typed out a letter last night, printed it, gave it to them along with your AWESOME letter and a stamped, addressed envelope, how could they say no, right?Just wanted you to know - now go and enjoy the mountain air!!!"

    The Coalition4MECFS Call to Action is part of a series of position statements that this young coalition members will publish and collectively push for an agenda that will benefit the patient community they serve.

    Please feel free to use our letter as a sample or template for one of your own.

    We are grateful to Mary Dimmock, Michael Munoz & Lori Chapo Kroger for their dedication and commitment to get our first Call to Action in place so quickly and effectively.

    Marly Silverman, Founder, PANDORA - Dash to www.p-a-n-d-o-r-a.org
    Member, Steering Committee, Coalition4MECFS
    PANDORA is a proud Charter Member of the Coalition4MECFS.org

  13. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    I'd like to add a little background information to the Coalition notice paragraph 4:


    The striving for "harmonization" between DSM categories and ICD Chapter V (the Mental and behavioural disorders chapter of ICD-10) categories is a process initiated many years ago, during the development of both existing editions.

    The APA and the WHO, Geneva, have already achieved a degree of congruency between categories in the existing DSM-IV and categories in Chapter V of ICD-10.

    For example, this is a simplified table showing how the "Somatoform Disorders" categories currently compare within the two classification systems.

    (The disorder descriptions are not exactly the same, nor are the criteria, but there is a degree of correspondence. Note also that while ICD-10 Chapter V classifies "Neurasthenia", the DSM has dropped "Neurasthenia" for DSM-IV.)


    Current DSM-IV Codes and Categories for Somatoform Disorders and their ICD-10 Equivalents:

    [​IMG]



    So the process of "harmonization" between DSM-IV and Chapter V of ICD-10 has been a joint undertaking.

    The APA participates with the WHO in an "International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders" and the "DSM-ICD Harmonization Coordination Group" which were set up in 2007, and which meet face-to-face a couple of times a year.

    The International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders is chaired by DSM-5 Development Task Force member, Dr Steven Hyman, MD and co-ordinated by Dr Geoffrey Reed, PhD, who is seconded to the WHO, Geneva, to co-ordinate the revision of Chapter V (which will be known as Chapter 5 in ICD-11).


    For the forthcoming DSM-5 and ICD-11, the APA and the WHO have committed as far as possible:

    "To facilitate the achievement of the highest possible extent of uniformity and harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria."

    with the objective that

    "The WHO and APA should make all attempts to ensure that in their core versions, the category names, glossary descriptions and criteria are identical for ICD and DSM."

    But the WHO acknowledges that there may be sections where congruency between approved DSM-5 categories and the corresponding categories in ICD-11 Chapter 5, may not be achievable.


    For example, the WHO has strict taxonomic rules for ICD classifications and codings which will continue to apply to ICD-11 and which may not facilitate the accommodation of the radical overhaul of the "Somatoform Disorders" section that the SSD Work Group is proposing - even if ICD-11 Revision Steering Group and WHO classification experts were to consider these proposals to be valid propositions.

    Between one edition and the next, the WHO may, for example, add new disease and disorder terms; or move an existing ICD category term out of the "R code" chapter (Chapter 18) and relocate it in another chapter in response to scientific developments; or move an existing disease or disorder within a chapter to place it under a different parent class; or remove a parent class, as is being proposed for the G93 Other disorders of brain, for ICD-11.

    But the SSD Work Group is proposing to take a number of existing categories (which have parallel categories in ICD-10) and combine them under a new category CSSD, thus:

    [​IMG]

    [​IMG]


    I consider that ICD-11 would find such radical changes difficult to achieve congruency with under ICD taxonomic rules.


    So it needs to be understood that the "Somatoform Disorders" (or "Somatic Symptom Disorders", as they propose to rename them) categories for DSM-5 correspond with the "Somatoform Disorders" categories of Chapter 5 Mental and behavioural disorders in the forthcoming ICD-11 - not with Chapter 6 Diseases of the nervous system, where PVFS, (B)ME have been classified since 1992, and to which CFS is indexed.

    It's not known to what extent the various DSM-5 Work Groups (there are 13 plus a number of study groups) and the ICD-11 Topic Advisory Group for Mental and behavioural disorders are collaborating or whether the respective sections of DSM-5 and ICD-11 Chapter 5 are being developed in parallel. It's not known either, at what point in the Timelines for the development of both systems, "harmonization" would be anticipated to have been agreed upon, or rejected if not feasible or acceptable to either party for any given section, for whatever reasons.

    But the Alpha drafting platform for ICD-11 currently shows no evidence of mirroring the radical proposals that the DSM-5 SSD Work Group are proposing.

    ICD-11 is now running around a year behind with its own Beta draft and has just shifted its Beta Timeline by 12 months, so it's running even more out of synch with DSM-5.

    DSM-5 will need to be largely completed by March-December 2012 for presentation to the APA Board of Trustees, whereas ICD-11 isn't now expecting to launch its Beta draft until May 2012 - so the slipping Timelines for ICD-11 and the differences between their drafting and field trial schedules may also present barriers to "harmonization".

    DSM-5 is also expected to "harmonize" with the forthcoming US specific ICD-10-CM, for which a partial code freeze will be implemented this year, in October 2011. So the drafting schedules for all three systems are no longer in synch.


    You can see the ICD-11 Alpha draft page for "Somatoform Disorders" here:

    http://apps.who.int/classifications/icd11/browse/l-m/en#/@_@who_3_int_1_icd_2_F45

    (You will need to click the drop down for child classes.)


    PVFS, (B)ME and CFS in ICD-11:

    For ICD-11 Alpha draft, the proposal is for CFS, PVFS and (B)ME to be classified in Chapter 6, with PVFS -> CFS specified as an Exclusion to Chapter 5 "Somatoform Disorders".

    See screenshots for ICD-11 Alpha draft for CFS, showing (Benign) ME specified as an Inclusion term to CFS in Chapter 6 Diseases of the nervous system, plus further notes on the proposals for PVFS, CFS and (Benign) ME in this post: http://wp.me/pKrrB-16N


    me.agenda@virgin.net
    http://dxrevisionwatch.wordpress.com
    http://meagenda.wordpress.com
  14. Cort

    Cort Phoenix Rising Founder

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    Thanks Suzy - you have really lead the way here - we are indebted to you...

    The Coalition4ME/CFS is a bit behind here - we are just learning how to work as a group...In the future we will be quicker to the mark. We hope to leverage our voices to make a strong stand and a real difference in this disorder.

    Phoenix Rising will make a submission this year and I will look for our old one.

    Other US non-profits are welcome to join. :)
  15. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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  16. Cort

    Cort Phoenix Rising Founder

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    Great to hear about Dr. Foote! Psychiatrists against the CSSD - what could be better than that?
  17. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Indeed, the DSM-5 issue has been discussed on these forums since December 2009, and I have been publishing on DSM-5 elsewhere since early 2009.

    I am a UK advocate and DSM-5 has implications for all of us.

    But a US campaign, from the US perspective, needed to have been initiated prior to the last public review, in 2010, or immediately following that review, in readiness for this second review.

    It is unfortunate that the APA brought the date of the second review forward - it was originally scheduled for May - June, then shifted to August - September 30, (just one day before the partial code freeze for ICD-10-CM) then reverted to May 4, with no prior warning from the APA. Also, this is a six week review period, whereas last year's was ten weeks - but alerts did go out on May 5, and since then, I have published and circulated two further alerts, and on these forums, too.

    I appreciate that the focus has understandably been on XMRV this past 12 months - but however XMRV pans out, there will still be DSM-5, but there has been virtually zero interest in this issue from US patients on these forums since the last public review was held.



    me.agenda@virgin.net
    http://dxrevisionwatch.wordpress.com
    http://meagenda.wordpress.com
  18. Andrew

    Andrew Senior Member

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    I want to ask people to write, but I don't know how to explain why we are responding again. Also, there is a deadline listed. What is the descriptive name of whatever is going on now that will end this month.
  19. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Andrew,

    The process:

    The APA is currently holding

    A second public (or stakeholder) review and comment period for its

    Proposed Draft Revisions to DSM-IV Disorders and Criteria for new and existing mental disorders.

    On May 4, the APA posted revised draft criteria on its DSM-5 Development website for public scrutiny and feedback.


    The deadline

    The deadline is June 15 - not the end of June. So there are only around 12 days left in which to get comments in.


    Registration:

    Register on the DSM-5 Development site at any time to submit comment to the appropriate Work Group by June 15.

    Comments are uploaded via a WYSIWYG editing tool.

    It will accept external links but not attachments. In order to register, stakeholders need to provide name, country and a working email address. On completion of the form, a confirmation email is generated with a password. Last year's log in details appear to have been retained for those who submitted, last year.

    You can bring up a commenting box on any page, but I'd suggest that you advise your contacts to respond on this page, once logged in:

    http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=368

    I would also suggest you advise that they head their submissions:

    "For the attention of the Somatic Symptom Disorders Work Group"

    Also that they state their credentials as a stakeholder, eg, I am submitting comment as a carer, patient, clinician, allied health professional, medical claims lawyer, whatever.


    Why are we asking people to comment:

    Because we have a second opportunity to submit feedback and make our considerable concerns known. This process is open to all stakeholders and this is an important issue.

    Our input and that of professionals may not have any impact but we have this opportunity to submit feedback and we should make good use of it.

    The APA says:

    http://www.dsm5.org/proposedrevision/Pages/Default.aspx

    "The work group members will review all feedback and make decisions about further revisions based in part on the comments provided as well as on results from field trial testing, which is currently underway. Once the next edition of changes have been implemented, we will post the revised criteria on this site to allow commentary once again."

    *Please note that all input we receive will be reviewed, though we can not guarantee that your suggestions will be incorporated into any revisions. "


    -------

    There is a third public review scheduled for January - February 2012, following the field trials. That is currently scheduled for two months.



    Since the last public review process, a number of revisions have been made to the proposals for the "Somatic Symptom Disorders" categories and the two key documents have been edited:

    http://www.dsm5.org/Pages/RecentUpdates.aspx

    [...]


    Somatoform Disorders

    Addition of the following disorders to DSM-5:

    Simple Somatic Symptom Disorder (Ed: that did not appear in the first review)

    Illness Anxiety Disorder

    Elimination of the following DSM-IV disorders:

    Hypochondriasis (being replaced by Illness Anxiety Disorder) Criteria changes:

    Body Dysmorphic Disorder - criteria and severity scale updates


    Complex Somatic Symptom Disorder multiple changes to criteria and optional specifiers

    Conversion Disorder (renamed Functional Neurological Symptoms) addition of criterion D

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

    I don't think we have the two key "Disorders Description" and "Rationale" documents in this thread so I am attaching them.

    Attached Files:

  20. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    I have made some textual edits to this post

    Post 13

    and also added some images.

    Suzy

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