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APA moves DSM-5 Publication date to 2013

Discussion in 'Action Alerts and Advocacy' started by Dx Revision Watch, Dec 10, 2009.

  1. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    (Note also: Elephant in the Room Series Four: New papers in the January 2010 edition of the Journal of Psychosomatic Research: http://wp.me/p5foE-2uH)


    American Psychiatric Association (APA) Press Release: DSM-5 Publication Date Moved to May 2013: http://wp.me/p5foE-2uO

  2. Andrew

    Andrew Senior Member

    Los Angeles, USA
    I'm not sure what to do with this. Are they proposing a change in somatization and depressive disorders in a way that hurts us? Or adding a new disorder that hurts us?

    Or, perhaps, are we going to propose including a differential diagnosis that forces the exclusion of CFS. I don't if this might blow up in our faces or not.
  3. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch


    Andrew, I posted a (longish) response on another site, earlier today, to a very similar question.

    It's a complex issue and I cannot give you a quick answer.

    Also, because the DSM-V Work Group that has relevance to us (the Work Group for "Somatoform Distress Disorders") has not published an update since April 09 and because these updates are in any case very sketchy, it won't be known what the latest proposals for the DSM-V category currently known as "Somatoform Disorders" are going to be until the DSM-V draft is released for public scrutiny, early next year.

    We have some information gleaned from journal editorials and reviews published on behalf of the Work Group for "Somatoform Distress Disorders" and from other editorials which refer to the deliberations of the SDD Work Group, but what is approved by the Task Force for the alpha draft may have changed significantly since proposals put forward earlier this year. It is evident, though, that the SDD Work Group is struggling with this revision of this category.

    It has been my intention to post an article on my site over the next couple of weeks summarising what we know so far. So what I'll do is this, when I have put this summary together I'll post a copy here or a link to my site. So would you mind hanging on a week or two for a full response?

    In the meantime, here are links to recent commentary around the DSM revision process from Allen Frances, MD, published on the website of Psychiatric Times (Frances and Spitzer have been two of the most vocal critics of the current Task Force and had both worked on previous editions of DSM). There are also links to an editorial and an article in this week's UK New Scientist - again around the DSM-V revision process, in general, which may be of interest.

    Opinion on DSM-V revision on Psychiatric Times site:


    03 December 2009
    Psychiatric Times


    Alert to the Research Community—Be Prepared to Weigh in on DSM-VAllen Frances, MD

    Dr Frances was the chair of the DSM-IV Task Force and of the department of psychiatry at Duke University School of Medicine, Durham, NC. He is currently professor emeritus at Duke.

    Articles on DSM in this week's New Scientist:



    Time's up for psychiatry's bible
    09 December 2009



    Psychiatry's civil war
    09 December 2009 by Peter Aldhous


    Short link for APA Press Release: http://DSM5toMay2013.notlong.com

    or copy on ME agenda at: http://wp.me/p5foE-2uO
  4. Andrew

    Andrew Senior Member

    Los Angeles, USA
    Thanks for the answer you did give. I have a general idea of what this is about. I was trained in the use of the DSM-III (long time ago), and I saw part of what went into DSM-IV. I no longer have the health to do extensive reading or comprehension. But if you ever see a specific link where you see a problem, count me in. Or if you want me to read something you posted elsewhere, let me know.
  5. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch


    Thank you, Andrew.

    I have been researching the DSM-V revision process in general (and specifically in relation to the possible implications for us) and also the ICD-10 revision process since February, this year.

    I became involved in this as a result of the CISSD Project which completed in 2007. It was necessary to research the CISSD Project because there was so little information in the public domain about the nature of the project, its status, its aims and objectives, who had been involved in it and who had funded it.

    Since the end of January, I have been publishing reports and related material in the "Elephant in the Room" series around the CISSD Project, and DSM-V and ICD-11 revisions. I have also been liaising with Dr Geoffrey Reed who is co-ordinating the revision of ICD-11 Chapter 5 and also has responsibility for overseeing some of the technical work on Chapter 6.

    These reports have been published on my own site, via Co-Cure and a few other lists.

    Links to these reports and some related documents are compiled on one page of my site, here:


    I also compiled a directory of key DSM and ICD revision process and CISSD Project links and summary information which is also available from that page. (The directory needs updating and there are some additional links to be added to bring it up to date with the material on the main site pages.)

    As I say, I will be doing a new article soon, but in the meantime if you wanted to, you can read what I posted earlier today at this link here, which is for a Discussion Page on the Whittemore Peterson Institute Facebook site. I think the site is set for public view, so if you don't have a Facebook membership you should still be able to view the page.


    It is Post #4 and relates specifically to proposals for the revision of the DSM category currently called "Somatoform Disorders" but which is likely to be renamed in DSM-V.

    As I say, until the options are published in the New Year, we will not know what the latest proposals are - but I think it is worth reading what information has been published so far, but with the caveat that what is published as an Alpha Draft in the New Year may differ significantly from earlier proposals, which have themselves not been set out in any great detail.

    I could post the Facebook posting here, but it was posted off the cuff for someone who may not have a lot of background knowledge around ICD-10 and DSM, and I would prefer to do an edited version for my own site.

  6. Andrew

    Andrew Senior Member

    Los Angeles, USA
    Just thinking here. Maybe you can get help from Leonard Jason and Fred Friedberg. They have psychology backgrounds and they are CFS advocates.
  7. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Christopher Lane: American Psychiatry Is Facing "Civil War" over Its Diagnostic Manua

    Interesting piece from Christopher Lane

    Christopher Lane is the Pearce Miller Research Professor of Literature at Northwestern University and the author of Shyness: How Normal Behavior Became a Sickness. (See ful bio http://www.psychologytoday.com/blog/bloggers/christopher-lane-phd )

    Psychology Today

    Side Effects
    From quirky to serious, trends in psychology and psychiatry.
    by Christopher Lane, Ph.D.


    December 12, 2009, Psychiatry

    American Psychiatry Is Facing "Civil War" over Its Diagnostic Manual What's the real reason DSM-V has been delayed?

    Yesterday, the American Psychiatric Association announced that it is pushing back the publication of DSM-V until 2013. The APA tried to put a good face on this rather embarrassing admissionembarrassing, because several spokespeople for the organization had insisted, quite recently, that they were on-track for publication in 2012 and that nothing would deter them. They maintained that position even as an increasingly acrimonious quarrel between current and former editors of the manual spilled onto the pages of Psychiatric News.

    "Extending the timeline will allow more time for public review, field trials and revisions," APA President Alan Schatzberg declared,

    (http://www.medpagetoday.com/Psychiatry/GeneralPsychiatry/17482 )

    conveniently omitting that most of the field trials have yet to begin because the working groups can't agree on their criteria. "The APA is committed to developing a manual that is based on the best science available and useful to clinicians and researchers." Owing to Dr. Schatzberg's statement, several news services played down the announcement, perhaps fearing to make too much of it.

    They may not know that an explosive article and editorial is due to appear in the print edition of New Scientist two days from now (December 14th). It's been up on the journal's website since Wednesday, and it's already had a significant effect. The article is called "Psychiatry's Civil War," and it documents in fairly exhaustive detail the DSM editors' public feud, which sank so low at one point that the current editors accused Allen Frances, editor of DSM-IV, of raising questions about scientific and editorial procedure simply to continue earning royalties from DSM-IV (DSM sales since 2000 have exceeded $40 million).

    (http://www.newscientist.com/article/mg20427382.400-times-up-for-psychiatrys-bible.html )

    "Both Dr. Frances and Dr. Spitzer have more than a personal 'pride of authorship' interest in preserving the DSM-IV and its related case book and study products," the same Dr. Schatzberg insinuated darkly

    (http://www.psychiatrictimes.com/display/article/10168/1425806 )

    in Psychiatric News last July. "Both continue to receive royalties on DSM-IV associated products."

    Yet Frances raised legitimate questions about the scandalous lack of transparency surrounding the DSM discussions and the damaging pledge to secrecy that DSM consultants have legally agreed to upholdallegedly to protect intellectual property, though the manual is already copyrighted.

    Given the embarrassing evidence in the New Scientist article, whose associated editorial is called "Time's Up for Psychiatry's Bible," the timing of the APA announcement raises significant flags. As the New Scientist put it in a rider that appeared on its website yesterday, "Since [the] article was first posted [last week], the American Psychiatric Association has announced that the publication of DSM-V will be delayed until May 2013."

    You'll find the article and editorial here

    (http://www.newscientist.com/article/mg20427381.300-psychiatrys-civil-war.html?full=true )

    and here (http://www.newscientist.com/article/mg20427382.400-times-up-for-psychiatrys-bible.html )

    The article was written by Peter Aldhous, bureau chief of the New Scientist's San Francisco office. (Disclosure: I was interviewed for the article, based on my knowledge of the unpublished documents and memos that went into the creation of DSM-III, -IIIR, and -IV and the dozens of new disorders they added to those editions of the manual. I've also written about the editorial feuding for the Los Angeles Times

    (http://www.latimes.com/news/opinion/commentary/la-oe-lane16-2008nov16,0,5678764.story )

    and Slate.) (http://www.slate.com/id/2223479/ )

    Perhaps the most significant implications for the APA, right now, concern the New Scientist's argument that the DSM should cease to be known as the discipline's "bible." Given the acrimony and scale of disagreement, that sounds quite reasonable. If even the manual's editors have profound disagreements over its content and criteria, then it ceases to be an authority that psychiatrists, doctors, social workers, lawyers, health insurers, and others using it can cite and consult "chapter and verse." As the editors at New Scientist put it, "This week we report on a volume that has outlived its usefulness."

    They aren't saying that the manual's diagnostic importance has disappeared altogether. "The final wording of the new manual," they concede, "will [still] have worldwide significance." But the New Scientist urges the APA to update the manual online, with full transparency and somehow without the influence of drug companies who fund much of the research and supplement the salaries of way too many DSM consultants. As the New York Times noted

    (http://well.blogs.nytimes.com/2008/05/06/psychiatry-handbook-linked-to-drug-industry/ )

    in May 2008, "More than half" of the writers of DSM-V "have ties to the drug industry" as paid consultants.

    David Kupfer, chair of the DSM-V Task Force, has also given very mixed signals about the direction he intends to take the manual, telling the Chicago Tribune last December, "If currently listed maladies fail th[e] test, they'll be dropped,"

    (http://archives.chicagotribune.com/2008/dec/27/health/chi-dsm-controversy-26-dec27 )

    before he signaled far more loosely to the Los Angeles Times, five months later, "There are no constraints on the degree of change."

    (http://articles.latimes.com/2009/may/26/science/sci-mental-disorder26 )

    "No constraints"? The phrasing may be more than unfortunate; it also points to an underlying truth about the task force and the serious risks of manipulation by drug companies who are eyeing every poorly conceived idea and proposalbitterness disorder, apathy disorder, internet addiction disorder, and quite a few otherslike hawks.

    Although I've had serious disagreements with Drs. Spitzer and Frances over past DSM publications, I share their concern over the lack of transparency to the revisions and the serious implications for public health of including so-called "subthreshold" diagnoses. As Frances put it in Psychiatric News,

    (http://www.psychiatrictimes.com/display/article/10168/1425378?pageNumber=3# )

    "Undoubtedly, the most reckless suggestion for DSM-V is that it include many new categories to capture the milder subthreshold versions of the existing more severe official disorders. The...DSM-V Task Force has failed to adequately consider the potentially disastrous unintended consequence that DSM-V may flood the world with new false positives...The result would be a wholesale imperial medicalization of normality that will trivialize mental disorder and lead to a deluge of unneeded medication treatmentsa bonanza for the pharmaceutical industry but at a huge cost to the new false positive 'patients' caught in the excessively wide DSM-V net."

    For more information on earlier revisions to the DSM, visit www.christopherlane.org
  8. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Commentary on ME agenda site

    American Psychiatry Is Facing “Civil War” over Its Diagnostic Manual What’s the real reason DSM-V has been delayed? Christopher Lane

    Shortlink: http://wp.me/p5foE-2wt

    See also previous postings:

    Press Release: DSM-5 Publication Date Moved to May 2013

    Opinion on DSM-V (DSM-5) revision on Psychiatric Times site and in this week’s New Scientist, 9 December

    PDF of press release here: http://DSM5toMay2013.notlong.com

    The American Psychiatric Association (APA) has yet to update its website to reflect last Thursday’s predicted announcement that the publication date for DSM-V is being shifted from May 2012 to May 2013. According to the press release, draft changes to DSM are to be posted on the DSM-V website in January 2010. Comments will be accepted for two months for review by the relevant DSM-V Work Groups for each diagnostic category. Field trials for testing proposed changes will be conducted in three phases.

    DSM-V pages here: http://www.psych.org/MainMenu/Research/DSMIV/DSMV.aspx

    DSM-V Timeline page here: http://www.psych.org/MainMenu/Research/DSMIV/DSMV/Timeline.aspx


    Interesting piece on 12 December from Christopher Lane:

    Christopher Lane is the Pearce Miller Research Professor of Literature at Northwestern University and the author of Shyness: How Normal Behavior Became a Sickness.

    The original dissemination date for ICD-11 had also been 2012, with the timelines for ICD-11 and DSM-V running more or less in parallel ( http://www.apa.org/international/s08agenda25-Exhibit1.pdf ).

    ICD-11 has since slipped by two years.

    The most recent timeline I can provide was included in the June 2009 PowerPoint presentation by Robert Jakob (Medical Officer, Classifications and Terminologies, WHO Geneva), download here: ICD Revision Process [PDF format 1.33 MB]

    According to “ICD Revision” on Facebook:


    ICD-11 alpha draft will be ready by 10 May 2010
    ICD-11 beta draft will be ready by 10 May 2011
    ICD final draft will be submitted to WHA by 2014

    It was reported, in August (DSM-V Field Trials Set to Begin, Elsevier Global Medical News), that the APA had planned to launch some field trials for DSM-V in October, with all field trials scheduled for completion by the end of 2010, for a previously anticipated publication date of May 2012. Lane claims that most of the field trials have yet to begin because the Work Groups can’t agree on their criteria.

    The recently published Editorial: Is there a better term than “Medically unexplained symptoms”? Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M and White P (J Psychosoma Res:Volume 68, Issue 1, Pages 5-8, Jan 2010) discusses the deliberations of the EACLPP study group and includes references to the DSM and ICD revision processes which suggest that the progress of the DSM-V “Somatic Distress Disorders” Work Group is in chaos.

    In Advice To DSM V…Change Deadlines And Text, Keep Criteria Stable,(Psychiatric Times, 26 August), Allen Frances MD, who had chaired the revision of DSM-IV, raised the issue of non parallel timelines and the forthcoming shift from ICD-9-CM to ICD-10-CM in the US – a transition now scheduled for October 2013:

    Frances wrote:

    On 09 July, in Dr Frances Responds to Dr Carpenter: A Sharp Difference of Opinion, Frances had called for the posting of all the suggested wordings for DSM-V criteria sets well before considering field trials:

    We have no information on how closely ICD Revision and DSM have been collaborating on the revision of their respective “Somatoform Disorders” sections, what changes ICD Revision might be proposing for its corresponding Chapter V: F45 – F48 codes, or to what extent WHO intends that any changes to this section of Chapter V will mirror Task Force proposals for DSM-V. If DSM Task Force has approved radical changes to the categories currently classified under “Somatoform Disorders”, will ICD Revision still aim for “harmonisation”?

    Despite the ICD Revision iCAMP meeting YouTubes, the ICD Revision blog and its Facebook site, we have no ETA for the launch of iCAT, the electronic platform through which ICD-11 will be developed. Is iCAT on schedule and will ICD-11 Alpha Draft be ready for May 2010 or is the WHO revision of ICD slipping, too?
  9. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    The Elephant in the Room Series Four: DSM-V: What do we know so far?

    Andrew, I have now published a new report on ME agenda site.

    The Elephant in the Room Series Four: DSM-V: What do we know so far?


    A copy of this material has been sent to:

    Sir Peter Spencer, Heather Walker, Tristana Rodriguez (Action for M.E.); Dr Charles Shepherd, Neil Riley, Tony Britton (ME Association); Jane Colby (The Young ME Sufferers Trust); Mary Jane Willows (AYME); ME Research UK; Simon Lawrence (25% M.E. Group); Trustees Invest in ME; BRAME; RiME; The Countess of Mar; Dr Ellen Goudsmit; Professor Malcolm Hooper.

    Five documents have been also been provided, including WHO ICD Revision: Content Model Style Guide; WHO ICD Revision: Content Model Blank; WHO ICD Revision: Morbidity Reference Group Discussion paper: ICD-11 rules, conventions and structure available from:


    Part One

    DSM-V draft proposals

    In the UK, the Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association (APA), does not have as much relevance for us as the WHO's ICD. But the revision of DSM-IV will shape international research and literature in the fields of liaison psychiatry and psychosomatics for many years to come.

    Until the APA publishes its alpha draft, we won't know what the most recent proposals are. But if our corner needs fighting, then according to UK health psychologist, Dr Ellen Goudsmit C.Psychol. FBPsS, we can rely on US psychologists, Jason and Friedberg, to fight our corner for us. Who else might we rely on?

    In his commentary Alert to the Research CommunityBe Prepared to Weigh in on DSM-V, Psychiatric Times, 3 December, Allen Francis MD, who had chaired the DSM-IV revision Task Force, wrote:

    Will our own professional advocates - our researchers, clinicians and patient organisations be reviewing and commenting on these draft proposals when these are published, early next year?

    According to a PowerPoint presentation delivered Dr B stn at the WHO's September ICD-11 iCAMP meeting:

    "ICD will be about 15 thousand Diseases, disorders..."

    and will involve

    "Between 5000 - 50,000 contributors"

    We are just one patient constituency amongst thousands of diseases, disorders and syndromes. But because of the means through which ICD is being revised this time round, there will be opportunity for input from a far wider range of sources into the ICD-11 development process. Again, our interests will need to be effectively represented and it should not be left entirely to the patient community. Our researchers and clinicians will need to be encouraged to input into the ICD revision process, too.

    The "H" word

    The APA participates with the WHO in the International Advisory Group (AG) for the Revision of ICD-10 Mental and Behavioural Disorders and a DSM-ICD Harmonization Coordination Group.

    The DSM-V Task Force and ICD-11 Revision Steering Group 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."

    The forthcoming shift, scheduled for October 2013, to a US modification of ICD-10 (ICD-10 CM*) and the disparity between the proposed ICD-10 CM classifications and the current ICD-10 codings for Postviral fatigue syndrome, (Benign) myalgic encephalomyelitis and chronic fatigue syndrome may account for an apparent lack of interest in the US in the development of ICD-11. But the proposed structure of ICD-11 may have implications for the US patient population, even though the US might not anticipate moving on to ICD-11 for many years.

    From the APA's 10 December press release:

    It was reported, in August (DSM-V Field Trials Set to Begin Elsevier Global Medical News), that the APA planned to launch some field trials for DSM-V in October, with all field trials scheduled for completion by the end of 2010, for a previously anticipated publication date of May 2012...

    Read full report on ME agenda here
  10. leelaplay

    leelaplay member

    HELP US Psych Assn wants to change WHO defn from organic disease to somatic syndrome

    Suzy Chapman posted this to co-cure on 17 December 2009

    HELP! This scares me. Greatly. The American Psychiatric Association is working with WHO and wants to change ME/CFS from an organic disease to a functional somatic syndrome!

    We can't let this happen. What can we do? Does anyone have history? Know how to do something about it?

    A new report has been added to http://meagenda.wordpress.com/

    The Elephant in the Room Series Four:

    DSM-V: What do we know so far?

    Shortlink: http://wp.me/p5foE-2wV
  11. fresh_eyes

    fresh_eyes happy to be here

    mountains of north carolina
    This is horrifying, IF! A perfect example of the psych lobby trying to retrench in the face of XMRV.
    You're right, this deserves to be at the top of the advocacy agenda.

    I think a good first step would be to write a summary of this issue in layman's terms. ME Agenda's work is extremely thorough and well-documented, but if you don't know the issue, it could be hard to make sense of. Anybody want to volunteer?

    From there, I say we approach the WHO - after all, their mission is to support human rights around health, and that's exactly what's on the line here.

    Argh. (*beats head against wall*)
  12. Samuel

    Samuel Senior Member

    1. Ask Suzy what to do and report back.
    2. Watch this.
    3. Get on the ICD website (register). It has a lot of data.
    4. Spread the word.
    5. Write elected representatives.
  13. Dr. Yes

    Dr. Yes Shame on You

    Merry Christmas from the APA

    Glad tidings!

    I freakin HATE the APA leadership.

    Though I have to say I didn't think the APA held the blanket opinion that CFS was a functional somatic syndrome. I've recently met psychiatrists who either disagree or have no opinion on the matter. So this is, to say the least, disturbing.

    I wonder if they're moving now because they want to keep their influence over CFS research and treatment despite any corroboration of the XMRV study. Or, more likely I guess, this was already in the works.
  14. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    WNYC Radio discussion with Christopher Lane


    Mental Illness by the Book
    Friday, December 18, 2009

    Comments [6]

    The Diagnostic and Statistical Manual of Mental Disorders, is commonly known as the bible of psychiatry. Christopher Lane, Northwestern University English literature professor and author of Shyness: How Normal Behavior Became a Sickness, discusses the controversy around revising this manual.
  15. Dr. Yes

    Dr. Yes Shame on You

    WNYC interview

    Thanks very much for posting the WNYC interview with Christopher Lane; I just listened to it and it's excellent. (Much easier for me than reading blocks of technical text, actually!) He does a great job, and gets an excellent call-in comment, too. Too few people know about this (including in the medical profession). The pharmaceutical industry involvement, the careerism, and the intellectual weakness that went into the last DSM, and are about to go into the next one, are all clearly outlined. Toddlers being given antipsychotics?! --and this based on new, expanded diagnostic criteria that have no valid scientific basis. (Sound familiar?) It's now clearer to me than ever why we're still in this mess. I guess money (or selfishness) really is the root of all evil...
  16. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Whoa, folks, slow down a bit...

    The revision of DSM-IV has been underway since 1999, though the Work Groups weren't convened until 2007 and not announced until May 2008.

    I've been putting out information on the forthcoming revisions of ICD-10 and DSM-V since the end of January, this year, on my website and via Co-Cure.

    Understand that in the US, you are not on the same version of the WHO's ICD as we are in the UK, Europe and some other parts of the globe - we are on ICD-10.

    It is ICD-10 that is being revised...

    ...but don't stop reading...

    The US is currently on ICD-9 CM (Clinical Modification)

    See the different versions set out here: http://en.wikipedia.org/wiki/History_of_chronic_fatigue_syndrome#ICD-10-CM

    The revision process towards ICD-11 started in 2007 and ICD-11 is timelined for approval and dissemination in 2014/15.

    But the US will be shifting onto ICD-10-CM (Clinical Modification) in October 2013 not onto ICD-11 when we do, in the UK (and elsewhere).

    So in the US, initially, you need to be relating to your advocacy organisations and to the US body responsible for your US Clinical Modification of ICD and you need to be focussing on your version of ICD (due to be adopted in October 2013) and how DSM-V will be relating to that version.

    In the UK and other parts of the globe currently using ICD-10 we need to relate to WHO Geneva.

    You will have seen from my latest report that in its 10 December press release, the APA wrote:

    So although the US is shifting up to ICD-10-CM in 2013, the revision of DSM still needs close watching in the context of ICD-11.

    We will not know for sure until the ICD-11 Alpha Draft is issued in 2010 whether the WHO is intending to review the current taxonomy for PVFS and ME. But the WHO's Dr Robert Jakob has written informally that the WHO has no current plans to revise the classifications and codings for PVFS and ME.

    Some proposals for ICD-11 have already been received via the ICD Update and Revision Platform. But the work of populating the Content for ICD-11 and reviewing proposals has not long been in progress.

    The revision of ICD-11 also has Work Groups - called "Topic Advisory Groups" (TAGs) led by TAG chairs and Managing Editors (TAGMEs) and there is a Work Group for Chapter V (Mental and Behavioural Disorders) and for Chapter VI (the Neurological Section).

    We now have the names of the members of these ICD Revision Topic Advisory Groups (TAGs) and they are published on my site.

    I was told, a couple of months ago, by the co-ordinator for the revision of Chapter V, that it was intended to issue a proposal form for Chapter V and Chapter VI which could be used by anyone to make proposals for these two chapters, backed up by citations.

    This proposal form has yet to materialise.

    The revision process towards ICD-11 will be a more transparent process than the revision of DSM. The documents, style guides, content models etc are being made accessible to the public here:


    The revision will be undertaken via a wiki-like authoring platform which is intended to be visible to members of the public but has not yet launched.

    See this series of YouTubes here for how it is going to operate: ICD Revision iCamp YouTube videos: http://www.youtube.com/user/WHOICD11

    Each Chapter of ICD-11 will have a “Start-up list” which, according to ICD Revision documentation, will include current ICD-10 content, input from ICD clinical modifications and WHO affiliate organisations, proposals already received via the ICD Update and Revision Platform and this should be evident from the iCAT platform.

    So we should be able to monitor the progress of the revision more closely than for DSM-V. An Alpha Draft of ICD-11 is scheduled for May 2010, followed by consultations, then a Beta Draft and field trials.

    Assuming that ICD-11 does not have plans for proposing any changes to the current classification and codings for PVFS and ME, that leaves us with three issues:

    1] How much content will be included for these two terms and what that content will be.

    2] What will ICD-11 do with the term "Chronic fatigue syndrome"?

    3] How much content will be included for "CFS" and what that content will be.

    Again, please note that the US codes currently proposed for ICD-10-CM for 2013 are not identical to ICD-10 and CFS is not coded the same as for PVFS and ME: http://en.wikipedia.org/wiki/History_of_chronic_fatigue_syndrome#ICD-10-CM

    But for the UK and other regions that are currently using ICD-10 the situation is this:

    There are two volumes of ICD-10 that have relevance to this specific issue: Volume 1: The Tabular List and Volume 3: The Alphabetical Index.

    There is currently no classification or coding in ICD-10 for "Chronic fatigue syndrome" in Volume 1.

    But "Chronic fatigue syndrome" has been included in Volume 3: The Alphabetical Index and given the coding G93.3 - the same coding currently given to PVFS and ME.

    (The issue of whether CFS should be split from PVFS and ME, or whether PVFS and ME should even be coded at the same code each other, is beyond the scope of this posting.)

    As far as ICD-11 goes, the question of what the WHO revision will do with "Chronic fatigue syndrome" remains hanging.

    Volume 1 and Volume 3 will need to fully integrate within the structure of ICD-11, so either the coding for "Chronic fatigue syndrome" will need to be formalised by pinning it to G93.3 (assuming no change to PVFS and ME) in Volume 1 or it will need to be coded elsewhere OUTSIDE Chapter V (Mental Health), or not given any code at all (which seems unlikely).

    Under WHO taxonomy rules you cannot have the same disease/disorder classified in two places - so in theory, WHO cannot code for "Chronic fatigue syndrome" in say Chapter VI, but also code it in Chapter V (Mental and Behavioural Disorders).

    This is a very important rule.

    I have set out on my site what we know so far about the "Somatic Distress Disorders" Work Group (SDD WG) proposals - and it looks as though things may still be pretty chaotic but we won't know what their latest proposals are until early next year.

    The DSM-V Task Force is expected to publish its most recent proposals in January for a two month consultation period, followed by field trials. Whether it will be ready to do so remains to be seen. There is already a document on the DSM-V site setting out how to go about submitting proposals for the revision of DSM-IV but I would think that a specific document will be published for the Alpha Draft - so my advice would be to wait until we have more information, in the New Year.

    The DSM SDD Work Group have been discussing getting rid of the term "medically unexplained symptoms" in order to eliminate the interface between psychiatric and general medical disorders. The conceptual framework the Work Group were proposing, in June, would:

    Under this framework everyone is stuffed! But then liaison psychiatry and psychosomatics has been stealthily colonising the entire spectrum of diseases and disorders for years.

    Since "chronic fatigue syndrome", IBS, FM and a number of other disorders and conditions are lumped under the "functional somatic syndrome" umbrella, we need to be scrutinising proposals for how "functional somatic syndromes" are to be accounted for in DSM-V.

    At the moment, they do not seem able to even agree on what to rename this section, let alone how it might be restructured or what might sit on what Axis.

    Additionally, DSM-V have committed, as far as possible, to strive for harmonization between DSM-V and Chapter V of ICD-11 - so the sections for what are currently categorised under "Somatoform Disorders" (which in DSM-V will likely be renamed) should, in theory, be broadly comparable between the two systems.

    So that means that we all need to be watching whether and to what extent the "Somatoform Disorders" section of DSM-V will be mirrored by ICD-11's Chapter V.

    Those of you in the US have already got "Chronic fatigue syndrome" coded in ICD-10-CM (or at least a proposed coding) - but you should still keep a close watch, until the ICD-10-CM (Clinical Modification) is "frozen".

    So I have made no claims that DSM is attempting to have PVFS or ME classified in DSM-V. Nor have I claimed that DSM-V is attempting to allocate a specific code to CFS in the section that is currently called "Somatoform Disorders". I don't personally think DSM-V are planning to allocate a code specifically for CFS, or specific codes for IBS or for FM - it's more subtle and insidious.

    The issue is how the so-called "functional somatic syndromes" are going to be represented within DSM-V and the implications for "dual-diagnosis" as in

    not just for CFS, IBS, FM, CS, CI, GWS etc but for all medical conditions.

    So I urge those in the US, if you aren't already doing so, to start discussing these issues with your patient orgs, advocates and professional advocates (and by these I mean your ME and CFS friendly clinicians, psychologists and researchers), now, before the draft proposals are released, early next year - the consultation period for this alpha draft is only two months.

    It's a complex issue.
  17. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

  18. _Kim_

    _Kim_ Guest

    Yes, Suzy. I will merge the threads.
  19. fresh_eyes

    fresh_eyes happy to be here

    mountains of north carolina
    Hi Suzy and Kim,

    I wonder if you guys would consider changing the title of this thread, to something like "keep CFS categorized as infectious, not psychosomatic". I did not understand what it was about until Islandfinn started the new thread, now merged.

    Suzy, your work on this is truly amazing. I'd like to put together a very brief, layman's-terms summary of the issue to put out to the public. What do you see as are the absolutely most essential points that need to be made, if we only had someone's attention for, say, 60 seconds?
  20. _Kim_

    _Kim_ Guest

    Suzy, what do you think about fresh_eyes proposal to change the thread title? I'll make whatever change you decide.

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