In case this is the last message I post before the holiday, I would like to wish everyone here a peaceful time and better health in the New Year. I'd also like to thank Cort and his mods for all the work they put in maintaining these forums.
@ Dr Yes and
fresh_eyes
It is perverse that the US is shifting from ICD-9 to an ICD-10 Clinical Modification in 2013, rather than shift onto ICD-11 in 2014/15, in step with many other parts of the world. This extension to the timeline is being sold by the APA as providing more time for public review, field trials and revisions and in order to better link DSM-V with the US implementation of ICD-10-CM codes for all Medicare/Medicaid claims reporting.
The APA's 10 December press release also states:
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."
See:
http://www.psych.org/MainMenu/Newsr...wsReleases/DSM-5-Publication-Date-Moved-.aspx
For the past six months, there has been an interesting dialogue unfolding on the website of
Psychiatric Times between professionals in the field, some of those working on the current revision and Task Force members from previous revisions, like Drs Frances and Spitzer. There has been no commentary published since the APA's announcement of a revised publication date, but it will be worth keeping an eye on the Psych Times site in January, in the run up to this anticipated release of a first draft and once the draft has been released.
There has been a good deal of criticism from professionals and those who worked on earlier editions of DSM about the lack of transparency in general, around the Task Force's MO, and particularly around the drafting of proposals and lack of detail within the very brief reports that have been published since the 13 Work Groups were convened - and some very snarky rebuttals from current DSM-V Task Force and APA board members.
The Psych Times DSM-V pages are here: http://www.psychiatrictimes.com/dsm-v
The APA's DSM-V pages have now been updated to reflect the revised publication date but there are no details yet on a firm date for the release of a draft or around the consultation process. As I've said to fresh_eyes, I'm not holding my breath.
You've written:
I have to say I'm still a bit confused about some key points, which you may be able to clear up for me (and others, I think):
-You disagreed with Ben's concern that "the revision process may result in ‘CFS’ (and possibly M.E.) being classified as mental disorder in ICD-11".
What are they basing this statement on, to your knowledge? And am I correct that you are basing your own contrary assessment on the lack of activity in that direction, and perhaps also on that statement by the WHO official you mentioned?
In my opinion there is
no evidence for the Ben statement,
"the revision process may result in ‘CFS’ (and possibly M.E.) being classified as mental disorder in ICD-11".
I think it might be helpful to set out briefly how the ICD revision is going being carried out:
The
ICD Revision Steering Group are promoting their revision process as an open and transparent one. Style Guides, Content Model Guides and key documentation
(some of it still undergoing preparation) is being posted on a website and can be accessed and downloaded by anyone.
(
https://sites.google.com/site/icd11revision/home/documents )
The revision of ICD is being carried out by a number of
Topic Advisory Groups (TAGs) who report to the Revision Steering Group (chaired by US Mayo Clinic, Dr Christopher Chute). The members of the various TAGs are scattered all over the world but are holding occasional face-to-face meetings in Geneva.
The revision of ICD-10 and the development of the structure for ICD-11 is to be carried out via a wiki-like collaborative authoring platform - the
iCAT.
You can see how this will operate in these ICD YouTubes, here:
iCAMP YouTubes on WHOICD11 Channel: http://www.youtube.com/user/WHOICD11
The
TAG Managing Editors (TAGMEs) will be networking for external reviewers with interest and professional expertise in the various categories they have been allocated to work on, to act as peer reviewers for content and proposals. So each TAG has a virtual working group which will draw on external reviewers, as required.
The TAGMEs will be responsible for overseeing the population of content according to the
ICD-11 Content Model Style Guide:
https://sites.google.com/site/icd11...ContentModelStyleGuide.doc?attredirects=0&d=1
Proposals for content or revision will be passed to the Revision Steering Group for approval, and thence to the classification experts for their approval and then entered into the draft. The members of the various TAGs are scattered all over the globe and many will be undertaking these responsibilities in parallel with day to day professional commitments - so much of this work will be being carried out electronically and via the iCAT platform.
On the ICD-11 Google site, ICD Revision has published a Content Model with some populated examples. It isn't clear at this stage just how much information might be included within ICD-11 for the categories of importance to us but the issue of definitions and content is going to be of equal interest to us as the issue of future classifications and codings, see:
iCamp Content Model Style Guide.doc at:
https://sites.google.com/site/icd11revision/home/documents
I've seen it suggested on a Wikipedia Talk page that because the revision is being carried out via a multi-layered wiki-like collaborative authoring platform that it will make it easy for "the psychs" to push their agenda - but the iCAT is not going to function like Wikipedia does.
It is anticipated that the platform
will be accessible beyond the WHO HQ staff, TAG Managing Editors and TAG members to all who register for access, but there will be internal and external review and various levels of interaction, editing authority and input into the authoring platform. It is understood that members of the public will have restricted input rights until after the release of the Beta draft.
Each Chapter of ICD will have a
"Start-up" list which 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 (for example, the recommendations of the CISSD Project) and proposals already received via other channels.
I was advised by the Co-ordinator of the
International Advisory Group (AG) for the Revision of ICD-10 Mental and Behavioural Disorders (Int AG MH) in September that proposal forms for Chapter V (Mental and Behavioural Disorders) and Chapter VI (Neurological) were going to be issued over a month ago, which anyone will be able to use to submit proposals, backed up by citations.
These forms have yet to materialise, which makes me wonder whether ICD revision is also slipping behind schedule. The Alpha Draft is timelined for May 2010 but the ICD Steering Group has yet to publish an ETA for the launch of the iCAT. Because of the proposed structure and the very much increased potential for content to be written into this new version of ICD, and given that it is intended that ICD-11 will be capable of integration with other electronic systems, it is a very ambitious project.
Because the iCAT has not launched yet, it's not yet known what content will form the "starting point" for existing G93.3 classifications or what proposals might already have been made, other than those evident from the Update and Revision Platform. (Currently only those of relevance are the recommendations submitted by Dr Richard Sykes on behalf of the CISSD Project, for which the Review paper published by the CISSD Project leads, in July 2007, is given as the citation.)
The TAG for Chapter V: Mental Health and the TAG for Chapter VI: Neurology have issued
no reports on their progress, and since the iCAT is not yet up and running and visible to the public - as far as ICD-11 goes, it is still early days and it will be at least four months until an alpha draft is released, though I would expect the iCAT to launch before the first draft.
So there is currently
no documentary evidence to support Ben's statement.
Earlier this year, Dr Robert Jakob, WHO Geneva classifications expert, responded to an enquirer by quoting from a earlier response from the WHO's Dr Saraceno:
"[...]The WHO ICD-10 Diagnostic and Management Guidelines for Mental Disorders in Primary Care, 1996, includes fatigue syndrome under neurasthenia (F48.0) but does not state or imply that conditions belonging to G93.3 should be included here. I would also like to state that the WHO’s position concerning this is reflected in its publications and electronic material, including websites.”
adding that
...again, there is no evidence for any change of the above to be made for ICD-11.
What Dr Jakob did not proffer was any clarification of whether TAG Neurology would be actively reviewing the current code to which Chronic fatigue syndrome is indexed, ie G93.3 (same as ME). There is nothing in the documentation currently available to us that suggests that this has been red flagged for review.
And, as Lesley Ben notes in the Short Version of her 29 page document, the WHO has never set out the basis on which it indexed Chronic fatigue syndrome at G93.3 or what the WHO perceives the relationship between PVFS, ME and Chronic fatigue syndrome to be; or whether, in classifying PVFS and ME at G93.3, it views the two terms as synonyms, as alternative terms, a sub-entity to the disease mentioned in the title of the category or a "best coding guess", according to their own rules for terminology where more than one term is classified at the same code; or whether it views the terms ME and Chronic fatigue syndrome as synonyms.
Since all three volumes of ICD-11 will be publicly available online and will be fully interactive with each other it seems unlikely that TAG Neurology would leave Chronic fatigue syndrome as an "orphan" in the Index without mapping across to Volume 2. TAG Neurology has the option of reviewing which chapter Chronic fatigue syndrome might be classified under
(as it has the option for reviewing any existing coding or indexed term) and what code should be ascribed to it - so yes, there is the potential for a review of its present G93.3 index coding - but again, there is
no evidence that the intention might be to place CFS under Chapter V.
So I consider that Ben's statement is misplaced. Even without that informal statement from Dr Jakob I do not consider that Ms Ben could provide you with evidence to support the statement
"the revision process may result in ‘CFS’ (and possibly M.E.) being classified as mental disorder in ICD-11".
Given that the ICD revision has not yet reached the iCAT and Alpha Draft stage and given that the TAG Groups report to the Steering Group, which then passes proposals to the WHO classification experts, there is a case for arguing that Dr Jakob had no locus for issuing informal statements about specific future classifications at this stage in the revision process - nevertheless he has done so.
You'll notice that I don't use the combined terms "CFS/ME" or "ME/CFS". I prefer not to use these combined terms, myself. But the WHO Geneva does not use them, either, in ICD-10. So when discussing CFS and ME in the context of ICD-10 revision it is meaningless to use either of these combined terms, so I will only ever talk around PVFS, ME or "Chronic fatigue syndrome" which is how it appears in Volume 3: The Alphabetical Index.
A point I would like to emphasise, which will have been made in the Ben document, is that according to ICD taxonomy rules, a disease or disorder cannot be classified in two places at once. So if Chronic fatigue syndrome remains indexed and/or coded at G93.3, it cannot also be coded in Chapter V: Mental and Behavioural Disorders (or anywhere else).
You have said:
-I think it's the quote from Co-Cure another member had posted that confused and concerned a lot of us; it's here at:
http://www.forums.aboutmecfs.org/showpost.php?p=26135&postcount=10
Where is
she getting that from, in your opinion? (Is she confused? After all, in the text she quotes, there is only mention of the proposal for "dual diagnosis", but not outright revision of the ICD "organic" coding of CFS, let alone for ME ).
I assume you mean "she" as in
islandfinn - not Ben?
The extract that islandfinn has posted is from the posting on my site:
The Elephant in the Room Series Four: DSM-V: What do we know so far?
16 December (
http://wp.me/p5foE-2wV )
You've said:
After all, in the text she quotes, there is only mention of the proposal for "dual diagnosis", but not outright revision of the ICD "organic" coding of CFS, let alone for ME
DSM revision does not talk about "ME" or "PVFS" - but then many in the field of liaison psychiatry and psychosomatics use "chronic fatigue", "chronic fatigue syndrome", "CFS", "CFS/ME", "ME/CFS" interchangeably - a fundamental issue but beyond the scope of these responses.
The extract:
The conceptual framework the DSM-V Somatic Distress Disorders Work Group were proposing in their most recent report...
"...will allow a diagnosis of somatic symptom disorder in addition to a general medical condition, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome."
is taken from the Editorial* published in
Journal of Psychosomatic Research by Dimsdale and Creed on behalf of the DSM-V Somatic Distress Disorders Work Group, and refers to a proposal by the SDD Work Group,
as it stood in April 09.
It is using "chronic fatigue syndrome" in the context of one of the so-called "functional somatic syndromes".
*
Free full text and PDF versions of the June ‘09 Editorial here: http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext
Where
islandfinn writes:
"The American Psychiatric Association is working with WHO and wants to change ME/CFS from an organic disease to a functional somatic syndrome!"
she/he appears to have not quite understood the proposal.
The DSM SDD Work Group already considers that "chronic fatigue syndrome" comes under the umbrella of the "functional somatic syndromes" (a term Dr Richard Sykes also uses in the Review paper the CISSD Project leads published in 2007 and term widely used in psychiatry/psychosomatics). So there is nothing new in that.
Until the draft is released we will not know how DSM is currently proposing to restructure the section that is currently known as "Somatoform Disorders"; we will not know what terms they are proposing to replace
"medically unexplained symptoms” with - a term we know they would like to get rid of.
In April (the last report they issued) they were giving consideration to a framework that would allow:
"Functional Somatic Syndromes", ie "chronic fatigue syndrome", IBS, FM and possibly a number of others, not to be differentiated from
"general medical conditions" thereby diminishing the interface between them, within a framework that would allow for an
additional diagnosis of "somatic symptom disorder" for
all diseases and disorders.
My understanding is that what they were suggesting at that point, is that any disease/disorder/condition whether be it heart disease, MS, IBS, RA, CFS, cancer, diabetes, could be give an additional diagnosis (an add-on if you like) of "somatic symptom disorder".
Clever, eh?
They were also, at that point, considering the category
“Psychological factor affecting a general medical condition” .
The Editorial goes on to list a variety of different subtypes included within the diagnosis of
“Psychological factors affecting a general medical condition” including a specific psychiatric disorder which affects a general medical condition; psychological distress in the wake of a general medical condition and personality traits or poor coping that contribute to worsening of a medical condition.
You see why it's not possible to boil this down to a few lines?
You've written:
-If I am understanding you correctly, you're saying the major threat is the "dual diagnosis" proposition that part of the DSM revision group has come up with, right? Could you please clarify the meaning of "dual diagnosis", practically speaking? i.e. how can an illness be seen as both organic and somatoform, and how would such a revision impact any of us?
As above, in April they were suggesting dispensing with the notion of medically "explained" and medically "unexplained" in order to diminish the boundary between the two, in order that ANY disease/disorder/condition could attract an additional diagnosis of "somatic symptom disorder" (or whatever they are proposing to call it).
Not "dual diagnosis" as in "CFS" is both "organic" and "somatoform". Or "IBS" is both "organic" and "somatoform".
But do away with the divide between "organic" and "medically unexplained" - so there is no divide, but consider ALL illnesses/diseases/disorders as having the potential for a somatic symptom disorder "add-on" - as a result of the illness itself, or the patient's coping abilities or failure to "adjust" or personality etc.
But they may already have ditched this and come the first draft, will be proposing something else.
So the issues for me will be when the draft comes out:
What structure are they now proposing?
Will the "Functional Somatic Syndromes" sit on the same Axis as "general medical conditions" with no division between them but with ALL medical conditions having the capacity for an "add-on" diagnosis of "somatic symptom disorder" of various flavours?
What will those flavours be?
Or
Would CFS, IBS, FM etc be subsumed under some other classification within this section of DSM-V?
Would they be listed by name, per se?
Would they be listed by name and given individual codings?
(But if they were - that would make it very difficult to "harmonize" this section of DSM with the equivalent section in ICD-11 Chapter V, given that Chronic fatigue syndrome currently sits outside Chapter V and cannot be classified in two places at the same time, and it would also produce incongruency with ICD-10-CM.)
I hope this answers some of your queries. We need to alert our advocates to the forthcoming draft and encourage them to participate in the consultation process - it's only two months. But in my opinion we simply cannot say, at the moment, "they are trying to do this" or "they are trying to do that" because a) we don't know yet and b) DSM don't seem to know what they are doing, either...
Now I have to go and change into my elf costume.
Suzy
