the psych lobby strikes again: DSM-5 v. WHO's ICD in the US

[Dx Revision Watch]

No.

The CISSD Project was funded by Sir Hugh and Ruby Sykes Charitable Trust.

The CISSD Project was undertaken between 2003 and 2007. The UK ME/CFS patient organisation, Action for M.E., acted as principal Administrators for the Project.

Established sources of funding provided in the name of the Project:

(Information provided under Freedom of Information Act by University of Edinburgh)

Date awarded: 17 June 2005
Amount: 4,950
Grant number: 077740
Source of grant/award: The Wellcome Trust [Administered by University of Edinburgh]
Applicant(s): Dr Richard Sykes
Grant type/purpose: Funding of meeting
Duration: Meeting held on 20 May 2005
Project Title: Key conceptual issues in the classification of somatoform and similar disorders: some outline proposals for a revised classification.

(Prof Michael Sharpe was UK Chair of the CISSS Project.)

Information provided by Action for M.E.

Date awarded: Recorded during financial year ending 31 March 2006
Amount: 24,000

Date awarded: Recorded during Financial year ending 31 March 2007
Amount: 18,750

Date awarded: Recorded during Financial year ending 31 March 2008
Amount: 20,000

Total: 62,750

Source of grant/award: All three tranches of funding were provided by the Hugh and Ruby Sykes Charitable Trust. This funding was administered by Action for M.E. who have disclosed that they received one retrospective payment of 1750 in administration fees.

In 2002, the assets and operation of Westcare UK (of which Dr Richard Sykes had been Director) had been transferred to Action for M.E. Action for M.E. "inherited" the Administration of the CISSD Project as part of the merger deal.

A request for information to the Institute of Psychiatry under the FOI Act around the CISSD Project disclosed the following:

That Dr Sykes Honorary Membership of the WHO Collaborating Centre ceased in 2007.
That Dr Sykes is now attached to the WHO Collaborating Centre as a Visiting Research Associate.
That since 2008, Dr Sykes has been engaged on the London Medically Unexplained Physical Symptoms and Syndromes Project (MUPSS).
That Dr Sykes now receives a research award from the Institute of Psychiatry for the London MUPSS Project.
That the award commenced in 2008 and is for 27,000 per year.
That the award is intended to cover all research and associated expenses (e.g. travel, attendance at conferences etc).
That the award is funded by a grant from the Hugh and Ruby Sykes Charitable Trust.*

*Sir Hugh Sykes is the brother of Dr Richard Sykes. Sir Hugh had been the original settlor and trustee of the organisation formerly operating as Westcare UK of which Dr Sykes had been Director. The Hugh and Ruby Sykes Charitable Trust had made regular grants to Westcare UK during the life of the operation prior to Westcare UKs merger with Action for M.E., in mid 2002.

Sorry for a cut and paste job, Min, but am in the middle of something.

Suzy

 

[Dx Revision Watch]

For fresh-eyes

We've learned from....ME agenda that the American Psychiatric Association is lobbying the World Health Organization to "harmonize" their diagnoses, which for our purposes means they want to have CFS changed from its current classification under infectious diseases of the nervous system, to a classification under functional somatic disorders. Uh-oh.

It needs to be understood that "harmonization" is a joint commitment between the WHO and the APA. There is already a degree of correspondence between DSM-IV and Chapter V of ICD-10.

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

For the next editions, 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."

"...which for our purposes means they want to have CFS changed from its current classification under infectious diseases of the nervous system, to a classification under functional somatic disorders. Uh-oh.

In needs to be understood that in ICD-10, CFS is not classified under "infectious diseases of the nervous system".

It is indexed only, in the Alphabetical Index at G93.3.

G93.3 sits under G93 which is

"Other disorders of brain".

There is no other content at G93.3 other than these two lines and there is no definition:

G93.3 Postviral fatigue syndrome
Benign myalgic encephalomyelitis

We do not know what the WHO Geneva understands by the term "Chronic fatigue syndrome" or how it views the relationship between "Chronic fatigue syndrome" and ME, or the relationship between ME and PVFS.

Therefore, in the absence of definitions it cannot be said for ICD-10 that CFS is currently classified under infectious diseases of the nervous system. The only information pertaining to "Chronic fatigue syndrome" in ICD-10 is a single line in the Index and coded to G93.3.

It does not appear in Volume 1.

I would not want people to think that the information that "CFS is currently classified under infectious diseases of the nervous system" had come from material I have published.


If you go to my new site, here, and scroll down about two thirds of the page to the heading "What are the issues?"

http://dxrevisionwatch.wordpress.com/about/

It sets out some of what we know so far about their proposals. And until the draft comes out later this month, we won't know what their most recent proposals are.

 

[fresh_eyes]

Hi Suzy -
Yes, I now understand what you've said above, but I thought the thread would become (even more) confusing for new readers if I changed the content of my original post.
Perhaps the best solution would be for me to just remove the reference to you? I'm happy to do so if you like.
Best, fresh_eyes

 

[Dx Revision Watch]

Fresh_eyes,

My concern is only that those reading this thread (and especially those coming fresh to the beginning of the thread without having read any of the later posts) have the correct information.

The statement:

"We've learned from the tireless MEAgenda that the American Psychiatric Association is lobbying the World Health Organization to "harmonize" their diagnoses..."

may give the impression that this is a one sided effort. But "harmonzation" between the two systems has already been achieved to an extent in previous versions of ICD and DSM and "harmonization" between DSM-V and ICD-11 is a joint commitment as I have already set out. The WHO acknowledges that there will be some sections where it will not be possible to achieve congruency.

Secondly the statement:

...for our purposes means they want to have CFS changed from its current classification under infectious diseases of the nervous system, to a classification under functional somatic disorders.

may mislead newcomers to the thread.

Firstly, because is it incorrect to say that Chronic fatigue syndrome is classified "under infectious diseases of the nervous system".

This is certainly not the case in ICD-10. (We still don't have the classifications and codings proposed for ICD-10-CM set out as they appear in the proposed document. It would be helpful if these could be set out.)

And as I've said already, we will not know what the latest proposals are until the draft is published.

From the reports and editorials that have been published so far, it isn't possible to deduce that the DSM-V SDD Work Group intends to

Classify Functional Somatic Syndromes
Classify or subsume CFS under that classification with or without a discrete code.

We don't know what they are proposing to rename the section that is currently called "Somatoform Disorders" - though the most recent suggestion is “complex somatic symptom disorder”.

We don't know the framework they are going to be proposing.

It may be the case that they are going to propose in the draft that "general medical conditions" and the so-called "Functional somatic syndromes" will sit on the same Axis (with no distinction between them into "medically explained" and "medically unexplained") but that both will have the potential for attracting an additional diagnosis of "complex somatic symptom disorder” or "somatic symptom disorder".

Eg. Heart failure + SSD, diabetes + SSD, CFS + SSD.

That is my understanding from the little that we have so far on the various proposals that have been suggested.

But that is not the same as classifying for FSSs under "Somatoform Disorders" (or whatever they rename that section as) and subsuming CFS under that, or coding specifically for CFS or for CFS, and possibly for IBS, FM and all the other disorders/conditions that psychiatry already lumps under the FSS umbrella.

Fresh-eyes, I can't tell you want to say or what to think, I can't tell you what interpretations you should make from the little information we have so far.

My site postings set out what we know so far and from what we know so far - I am not saying that:

DSM-V SSD Work Group are lobbying the WHO to change the classification of CFS from its current classification under infectious diseases of the nervous system, to a classification under functional somatic disorders.

And so I would not want my name associated with that interpretation.

I feel a little as though we have come full circle on this because I had set out my concerns over this on the thread that was later merged with my own thread.

These are the reports you need to scrutinise:

http://www.psych.org/MainMenu/Resea.../SomaticDistressDisordersWorkGroupReport.aspx

Report of the DSM-V Somatic Distress Disorders Work Group

November 2008
Joel Dimsdale, M.D.

[...]

3. Developing a draft schema for organizing somatic distress disorders. The group is considering a restructured diagnostic grouping for DSM-V under the general rubric of “Somatic Symptom Disorders.” The latter would include Psychological Factors Adversely Affecting General Medical Conditions, Complex Somatic Symptom Disorders (which groups together somatization disorder, undifferentiated somatoform disorder, hypochondriasis, pain disorder, and neurasthenia), Factitious Disorder, and Functional Neurologic Symptoms/Conversion Disorder. The group is also considering the utility of an Acute Somatic Symptom Disorder—either as part of the Somatic Symptom Disorder rubric or perhaps covered as a variant of Adjustment Disorders. Body Dysmorphic Disorder is being addressed primarily by another work group.


http://www.psych.org/MainMenu/Resea...tic-Distress-Disorders-Work-Group-Report.aspx

Report of the DSM-V Somatic Distress Disorders Work Group

April 2009
Joel Dimsdale, M.D.

The Somatic Symptoms Workgroup (SSW) is examining the mental disorders that are marked principally by their somatic symptoms. Patients with these disorders are commonly seen in non-psychiatric settings, but are rather rare in psychiatric practice settings.

Most of these disorders are organized in the DSM-IV under the heading of “Somatoform Disorders.” However that term itself is confusing to most medical professionals. Thus, the group is exploring different names that may more clearly denote the diagnostic territory of these disorders. “Somatic Symptom Disorders” is the current term under discussion.

The workgroup is exploring whether some of these disorders have so many common features that they may be meaningfully combined into a smaller number of disorders. Factitious disorders, for instance, in DSM–IV-TR, have 3 subtypes, and it little evidence has been found that value is gained by having all of these subtypes in the manual.

More controversial is a proposal the group has been examining, which would combine somatization disorder, hypochondriasis, pain disorder and undifferentiated somatoform disorder into one overarching disorder (tentatively entitled, “complex somatic symptom disorder”). The hallmark of this disorder would be somatic symptoms associated with significant distress and disability. In some cases the patient’s response is disproportionate and maladaptive. Our group is exploring the potential for eliminating criteria such as “medically unexplained symptoms” as a marker of this disorder because such considerations are commonly unreliable, divisive between doctor and patient and lead to mind-body dualism.

The SSW is considering the placement of various disorders either within this grouping or moving them elsewhere in the nomenclature. We are considering importing into this section what was called in DSM–IV, “Psychological factors affecting general medical condition” (PFAGMC). There is active discussion about the contours of this disorder which is actually one of the more commonly diagnosed disorders with a decidedly somatic focus. On the other hand, the SSW has suggested that Body Dysmorphic Disorder might be better conceptualized within the framework of OCD. There is active discussion about the contours of Conversion disorder, but no recommendations have yet been made.


The Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report by DSM-V Work Group members, Joel Dimsdale and Francis Creed was published in the June issue of the Journal of Psychosomatic Research and expands on the proposals in the April 2009 update:


http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

[...]

Psychological factor affecting general medical condition

Some authors have recommended wider use of this category as it is a diagnosis that encompasses the interface between psychiatric and general medical disorders [6]. It has also been stated that this diagnosis has been underused because of the dichotomy, inherent in the “Somatoform” section of DSM-IV, between disorders based on medically unexplained symptoms and patients with organic disease; in the latter, the concepts of somatization, hypochondriasis, etc, were not seen as relevant [15]. By doing away with the controversial concept of “medically unexplained,” the proposed classification may diminish this problem. The conceptual framework that we propose 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.

In fact, the diagnosis of “psychological factors affecting a general medical condition” includes a variety of different subtypes. The first includes a specific psychiatric disorder which affects a general medical condition. Other subtypes include psychological distress in the wake of a general medical condition and personality traits or poor coping that contribute to worsening of a medical condition. These presentations might well be considered in the rubric adjustment disorders. The location of this type of adjustment disorder has yet to be settled within the draft of DSM-V. The text (and placement) for these different variants of the interface between psychiatric and general medical disorders is still under active review.

Conclusion

The current structure of the somatic symptoms disorder disorders proposed for DSM-V differs considerably from that of the somatoform disorders in DSM-IV. This article gives an indication of a likely new structure, but much remains to be done before this is finalized. The next steps include a series of field trials of the new diagnoses, defining the criteria for disorders, and the relevant dimensions which may be used and close coordination with other chapters of DSM-V. One aspect of field trials is formal and informal feedback from users of DSM or ICD classifications. It is hoped that this editorial, although reflecting “work in progress,” will stimulate discussion and feedback that can be constructively fed into the workgroup.


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 (Journal of Psychosomatic Research: Volume 68, Issue 1, Pages 5-8 January 2010) discusses the deliberations of the EACLPP study group. The Editorial also includes references to the DSM and ICD revision processes.

(not available online)

Implications for DSM-V and ICD-11

There is overlap between the discussion reported here and the discussion currently under way towards the creation of DSM-V. Two of the authors (FC, MS) are also members of the working group on Somatic Distress Disorders of the American Psychiatric Association (APA), which is proposing a new classification to replace the DSM-IV “somatoform” and related disorders. In this working group, similar concerns about the use of the term and concept of “medically unexplained symptoms” have been raised [12]. The current suggestion by the DSM-V work group to use the term “Complex somatic symptom disorder” must be seen as step in a process and not as a final proposal. Unfortunately this term does not appear to meet many of the criteria listed above.

[...]

One major problem for reforming the classification relates to the fact that the DSM system includes only “mental” disorders whereas what we have described above is the necessity of not trying to force these disorders into either a “mental” or “physical” classification. The ICD-10 system has a similar problem as it has mental disorders separated from the rest of medical disorders.

The solution of “interface disorders”, suggested by DSM IV, is a compromise but it is unsatisfactory as it is based on the dualistic separation of organic and psychological disorders and prevents the integration of the disorders with which we are concerned here. This lack of integration affects the ICD classification also. For example functional somatic syndromes (e.g. irritable bowel syndrome) would be classified within the “physical” classification of ICD or Axis III in DSM (gastrointestinal disorders) and omitted from the mental and behavioural chapter entirely [13].

---------

This is all that is publicly available until the draft is published.

These are complex issues, it's not as straightforward as saying the DSM SDD WG want to do this...or they want to do that...

What I have been doing over the past 11 months is putting what information we do have in front of people and alerting them to the two revision processes and to information around them.

So, yes, I would prefer it if you took my name out of the comment that now sits at the beginning of this thread, because, as I say, I would not want readers to assume that your interpretation was shared by me or that what you have written about CFS being classified "under infectious diseases of the nervous system" had come from any material that I have published or that it referred to ICD-10.

As you know, I'm in the process of putting together a second website around the two revisions processes in readiness for the draft later this month and I will need to spend time over the next few days getting material up on it. So although I will dip back into this thread in a week or two, I'm not going to be around much in the meantime.

Best,
Suzy

 

[fresh_eyes]

Hi Suzy,

Just to be clear, I do (now) understand the distinctions you're making in the post above, though I didn't when I started this thread. This thread has been a process of working out our understanding of those distinctions (which are extremely confusing for many people) through discussion, and I have received feedback which suggests it's been successful. Which is all just to say, if you mean by 'come full circle' that you think I still have the same misconceptions as I did at the beginning, I don't. HOWEVER I do think it would add to the confusion to substantively change the first post, because then subsequent discussion would not make sense. I truly understand, because of your higher-profile situation, that you would not want your name associated with my (former) misconceptions, though, so I will go ahead and remove that reference to you.

Thanks & take care,

fresh_eyes

 

[starryeyes]

So is this the take-away message?:

QUOTE:
The current structure of the somatic symptoms disorder disorders proposed for DSM-V differs considerably from that of the somatoform disorders in DSM-IV. This article gives an indication of a likely new structure, but much remains to be done before this is finalized.
UNQUOTE

So instead of going from the Infectious Disease category, CFS is going from "somatoform disorder" to "somatic symptoms disorder"?

Dictionary Definitions:

Somatic: of, relating to, or affecting the body especially as distinguished from the germplasm or the psyche.

Somatoform is not in the dictionary... sounds like another made-up term by the Psych Brigade.

If I'm deciphering this correctly it seems like a slight improvement.

 

[Dx Revision Watch]

<snip>

So instead of going from the Infectious Disease category, CFS is going from "somatoform disorder" to "somatic symptoms disorder"?

No, teejkay.

Chronic fatigue syndrome is NOT currently classified in DSM.

And it is not classified under "Infectious Disease category" in ICD-10.

Please refer to Post # 104.

 

[mezombie]

WHO explains use of Alphabetical Index

While Chronic Fatigue Syndrome is not listed under G93.3, it is cross-referenced to this section in the WHO's Alphabetical Index.

The WHO, on its website, explains the importance of the alphabetical index in a summary description of the three volume ICD set, as follows:

"Volume 3: Alphabetical Index

The Alphabetical Index is an essential adjunct to the Volume 1, since it contains a great number of diagnostic terms that do not appear in Volume 1. The two volumes must therefore be used together.

The terms included in a category of the Tabular List are not exhaustive; they serve as examples of the content of the category or as indicators of its extent and limits. The Index, on the other hand, is intended to include most of the diagnostic terms currently in use and even provides guidance for many imprecise and undesirable terms."

Source: http://www.who.int/bookorders/anglais/detart1.jsp?sesslan=1&codlan=1&codcol=80&codcch=4

So it appears to me that the WHO is classifying CFS under G93.3, the same code used for Benign Myalgic Encephalomyelitis and Post-viral Fatigue Syndrome.

Suzy is correct; CFS has never been classifed as an infectious disease by the WHO. Neither have ME or Post-viral Fatigue Syndrome. All three (G93.3) fall under WHO's Chapter VI, "Diseases of the Nervous System", not Chapter I, which is the primary infectious disease category.

I do think this little tidbit from WHO regarding the interaction between the Alphabetical Index and the Tabular List is important to keep in mind. It puts CFS squarely into the neurological/brain disease category and keeps it out of any vague psychosomatic "fatigue" classification.

 

[DysautonomiaXMRV]

This is a really interesting post with lots of useful references.

One thing I thought I should say, is that legal codes of classification (although necessary)
can be ignored by the state and by doctors who are protected by the state's health trusts.

The British do this.

For example the classification of CFS with a relatively robust criteria cannot include or by explained by Somatization, but due to prejudiced views
many doctors re-name Somatization/Hysteria as CFS and never inform the patient.

Thus many patients are treated as malingering hysterics, who have CFS. (Incorrectly).
Thus many patients who are malingering hysterics, are told the have CFS (Incorrectly).

This obviously suits those who want to muddy the waters and make CFS anything and certainly
not a neuro immune disease linked to XMRV.

 

[Dx Revision Watch]

While Chronic Fatigue Syndrome is not listed under G93.3, it is cross-referenced to this section in the WHO's Alphabetical Index.

Hi Marie,

Over the past few weeks, I have been setting up a new site called Dx Revision Watch at:

http://dxrevisionwatch.wordpress.com/

I have clarified the coding situation for PVFS, (Benign) ME and Chronic fatigue syndrome in WHO ICD-10 (note ICD-10, not the proposed US ICD-10-CM) on my new site on this page:

http://dxrevisionwatch.wordpress.com/icd-11-me-cfs/

I have also set out the current codings for the F45 - F48.0 codes in Chapter V: Mental and behavioural disorders and highlighted the exclusions, and also the R codings in Chapter XVIII, and exclusions.

I have also set out the disparity between ICD-10 and the proposed codings for the forthcoming ICD-10-CM that is scheduled for implementation in the US in October 2013.

I have set out what WHO classification experts have issued in the way of statements.

This material is formatted over two pages - so don't miss the second page.

Suzy

 

[Dx Revision Watch]

New material about DSM-V (DSM-5) Somatic Symptom Disorder Work Group presentations

New material about DSM-V (DSM-5) Somatic Symptom Disorder Work Group presentation slides


(A version of this posting was published on Co-Cure on 19 January and also appears on DSM-5 Watch.)

The American Psychiatric Association (APA), publishers of the DSM, now plans to publish draft proposals for changes to its diagnostic categories on 10 February. [1]

Comments will be accepted for a "two to three month" public consultation and reviewed by the relevant DSM-V Work Groups. There is no information up on the site yet about the consultation process for this first draft.

According to Dr Todd Finnerty, sources close to the Task Force have said that the APA may launch its new DSM-V website prior to 10 February, in order to test the webages.

Those of us with an interest in corporate identity and house style, may have noticed that the APA's 10 December Press Release had used "DSM-5" not "DSM-V" and in a piece titled Why is DSM-5 Being Delayed (1 January) APA President, Alan F Schatzberg, had also used "DSM-5" throughout. Which might suggest that the APA may be intending to drop the use of Roman numerals for the forthcoming edition.

Other than via journal editorials, no updates have been issued by any of the DSM-V Work Groups since April, last year.

The DSM-V Work Group for "Somatic Symptom Disorders" that is revising categories currently classified under DSM-IV "Somatoform Disorders" has been exploring the potential for eliminating criteria such as "medically unexplained symptoms" in order to "diminish the dichotomy" between disorders based on "medically unexplained symptoms and patients with organic disease."

The conceptual framework the Somatic Symptom Disorders Work Group were proposing, in June 09, would

"...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." [2]​

DSM-V SSD Work Group presentation slides

In November '09, The Academy of Psychosomatic Medicine, the Organization for Consultation and Liaison Psychiatry and publishers of Psychosomatics, held its 56th Annual Meeting in Nevada. [3]

This Annual Meeting received "significant financial support" from sponsor drug companies: AstraZeneca Pharmaceuticals, Bristol-Myers Squibb and Otsuka Pharmaceutical, Inc., Eli Lilly and Company and Ortho-McNeil Janssen Scientific Affairs, LLC.

Three members of the DSM-V Somatic Symptom Disorders Work Group, Francis Creed, Lawson Wulsin and Chair, Joel Dimsdale, gave presentations around "Medically Unexplained Symptoms" (MUS) and DSM-V, and around DSM-V proposals and progress.

Links for PDFs for the Creed and Wulsin presentations slides are appended. Text only for the Dimsdale presentation is available, and I have also appended this.

This material, from November, represents the most recent information around the deliberations of the DSM-V Work Group that is revising the categories currently coded under DSM-IV "Somatoform Disorders".


When the APA publishes its proposals for changes to its diagnostic categories these will be posted as soon as they are available on my new

Dx Revision Watch site at: http://dxrevisionwatch.wordpress.com

For a Table setting out Current DSM-IV Codes and Categories for Somatoform Disorders and their ICD-10 Equivalents, and for more in depth information on the deliberations of the Somatic Symptom Disorders Work Group, so far, see:

DSM-5 Watch page: DSM-5 proposals 2: http://wp.me/PKrrB-hT

From the American Psychiatric Association's (APA) 10 December press release:

APA will continue to work with the WHO to harmonize the DSM-5 with the mental and behavioral disorders section of the ICD-11. Given the timing of the release of both DSM-5 and ICD-11 in relation to the ICD-10-CM, the APA will also work with the CDC and CMS to propose a structure for the U.S. ICD-10 CM that is reflective of the DSM-5 and ICD-11 harmonization efforts."​

Note: I have contacted The Academy of Psychosomatic Medicine to ask whether transcripts or notes for the first two presentations are available or are going to be made available in the future, in order that the slides might be better put into context. I have been told that transcripts are not available and that I would need to contact Francis Creed and Lawson Wulsin, directly.


Presentations:

The Academy of Psychosomatic Medicine
Bethesda, Maryland, US
The Organization for Consultation and Liaison Psychiatry
Publishers of Psychosomatics

2009 ANNUAL MEETING in LAS VEGAS
November 11-14, 2009
56th Annual Meeting

Award Lectures

Hackett Award - Friday, 12:45pm - 1:45pm

Francis Creed, MD, FRCP: Can We Now Explain Medically Unexplained Symptoms? [4]

PDF Creed Presentation Slides (No transcript)
http://www.apm.org/ann-mtg/2009/presenter-slides/HackettAward-creed.pdf

PDF References
http://www.apm.org/ann-mtg/2009/presenter-slides/HackettAward-creed-refs.pdf

(This is a lengthy but important presentation by DSM-V SSD Work Group member, Francis Creed. It is unfortunate that a transcript is not available but please view the slides - there are many references to "Chronic fatigue syndrome", chronic fatigue and IBS and to the so-called "Functional Somatic Syndromes".)


Workshops

Workshop 15 - Saturday, 1:45 - 2:45pm

DSM-V for Psychosomatic Medicine: Current Progress and Controversies

Lawson Wulsin, MD, FAPM, DSM V for Psychosomatic Medicine: Current Progress and Controversies [5]

PDF Wulsin Presentation Slides (No transcript)
http://www.apm.org/ann-mtg/2009/presenter-slides/W15-wulsin.pdf


Joel Dimsdale, MD, FAPM, Update on DSM V Somatic Symptoms Workgroup [6]

Text version (No slides)
http://www.apm.org/ann-mtg/2009/presenter-slides/W15-dimsdale-text.pdf

[Text version]

Update on DSM V Somatic Symptoms Workgroup

Workshop #15, APM Annual Meeting, 11-14-09
DSM-V for Psychosomatic Medicine: Current Progress and Controversies

The Somatic Symptoms Workgroup was charged with reviewing most somatoform disorders, psychological factors affecting medical condition, and factitious disorders. There is considerable confusion regarding the diagnostic terminology and a reluctance to use these diagnostic labels. In addition to relying on expert opinion and the research literature, the Workgroup has also been conducting studies in an effort to learn how physicians actually use these diagnostic labels.

These diagnoses are rarely coded. In a study of >1,000,000 Virginia Anthem Blue Cross policy holders, Levenson found that there were fewer than 600 patients with such disorders. [7] Of these 600 patients, the largest group of patients were diagnosed with Psychological Factors Affecting Medical Condition.

Four focus groups were held in San Diego and Edinburgh. Psychiatrists from very different practice settings attended these groups (child psychiatrists, forensic psychiatrists, psychopharmacologists, consultation psychiatrists, psychotherapists). Nonpsychiatrist attendees included neurologists, pediatricians, and gastroenterologists. Using themes identified from the focus groups, an anonymous internet poll was designed. Using mailing lists from a variety of professional organizations, physicians were invited to respond to an anonymous poll.

Three hundred thirty-two physicians responded to the poll. Two thirds were psychiatrists; two-thirds were from the United States. While in general, physicians reported that somatoform patients were relatively rare in their practices (i.e. 0-2%), some physicians reported high prevalence of these patients. Over 30% of the physicians regarded the diagnostic guidelines for pain disorder and somatoform disorder not otherwise specified as "unclear." Similar numbers of doctors regarded these particular disorders as "not useful." Physicians were uniform in their opinion that patients disapproved of such diagnostic labels. Respondents also felt that there was a great deal of overlap between somatization disorder, pain disorder, hypochondriasis, and somatoform disorder not otherwise specified. In addition, they felt that that there was overlap between the somatoform disorders and anxiety and depressive disorders.

The Somatic Symptoms Workgroup has been struck by the fact that "medically unexplained symptoms" (MUS) comprise the crucial intellectual underpinning of the large group of somatoform disorders; yet MUS designations are perilous. They foster mind-body dualism; they confuse "undiagnosed" with "unexplained"; they contribute to doctor-patient antagonism; and they base a diagnosis on a negative, rather than positive criteria.

The Workgroup is proposing a series of changes to these disorders. First off, such disorders would be grouped together under one rubric entitled "Somatic Symptom Disorders", which would include somatoform disorders, factitious disorders, and psychological factors affecting medical condition. Second, because of their many common features, the group is proposing that hypochondriasis, pain disorder, somatization disorder, and undifferentiated somatoform disorder be grouped together as "Complex Somatic Symptom Disorder", with optional specifyers to designate when the predominant presentation is, for instance, hypochondriasis, etc. MUS is de-emphasized for this diagnosis, which would require both prominent somatic symptoms causing distress or dysfunction, as well as positive psychological criteria (behavior, cognition, perception).

A draft description of these and other disorders will be published on the APA's DSM V website in January, 2010.*

In addition, a paper describing the thinking of the workgroup and providing a slightly earlier version of the diagnostic guidelines may be found at:

Dimsdale J , Creed F, and on behalf of the DSM-V Workgroup on Somatic Symptom Disorders. The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV-a preliminary report, J Psychosom Res, 66 (2009) 473-476

The workgroup welcomes comments from colleagues about the proposed changes. Are the proposed changes on the right track? Does this proposal represent, all in all, a step forward? Are there major adverse unintended consequences? Workgroup members include: Arthur Barsky, Francis Creed, Javier Escobar, Nancy Frasure-Smith, Michael Irwin, Frank Keefe, Sing Lee, James Levenson, Michael Sharpe [8], Lawson Wulsin, Joel Dimsdale (chair).

Please send comments to Joel Dimsdale via email jdimsdale@ucsd.edu .

[Text version Dimsdale Presentation Ends]​

*Since postponed to 10 February.


[1] American Psychiatric Association, DSM-V: The Future Manual
http://www.psych.org/MainMenu/Research/DSMIV/DSMV.aspx

[2] Editorial: Dimsdale J , Creed F, and on behalf of the DSM-V Workgroup on Somatic Symptom Disorders. The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV - a preliminary report, J Psychosom Res, 66 (2009) 473-476 http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

[3] The Academy of Psychosomatic Medicine 2009 ANNUAL MEETING November 11-14, 2009, Las Vegas. http://www.apm.org/ann-mtg/2009/index.shtml

[4] Francis Creed, MD, is a member of the DSM-V Somatic Symptom Disorders Work Group (aka Somatic Distress Disorders Work Group) and was a member of the international CISSD Project, co-ordinated by Dr Richard Sykes, PhD. Francis Creed is a co-editor of the Journal of Psychosomatic Research.

[5] Lawson R. Wulsin, MD, is a member of the DSM-V Somatic Symptom Disorders Work Group.

[6] Joel E Dimsdale, MD, chairs the DSM-V Somatic Symptom Disorders Work Group, is a member of the DSM-V Task Force and was a member of the CISSD Project.

[7] James L Levinson, MD, is a member of the DSM-V Somatic Symptom Disorders Work Group and was a member of the CISSD Project.

[8] Michael Sharpe, MD, Director, University of Edinburgh Psychological Medicine Research Group, is a member of the Somatic Symptom Disorders Work Group, a co-PI of the UK MRC funded PACE Trial and was a member of the CISSD Project.

Related information:

The current use of the diagnosis "Psychological Factors Affecting Medical Condition" in DSM-IV is set out here:
http://www.behavenet.com/capsules/disorders/psyfactorsmedcon.htm

Francis Creed is currently working with EACLPP colleagues, Henningsen and Fink, on a draft white paper for the EACLPP MUS Study Group called: "Patients with medically unexplained symptoms and somatisation - a challenge for European health care systems". A copy of the MUS Study Group working draft can be downloaded from the EACLPP site:
http://www.eaclpp.org/documents/Patientswithmedicallyunexplainedsymptomsandsomatisation.doc

The January 2010, Editorial "Is there a better term than "Medically unexplained symptoms?" Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M, White P. J Psychoso Res: Volume 68, Issue 1, Pages 5-8, discusses the deliberations of the EACLPP study group. The Editorial also includes references to the DSM and ICD revision processes. (Subscription or payment required)

Javier Escobar, MD, Director of the University of Medicine and Dentistry of New Jersey (UMDNJ) - Robert Wood Johnson Medical School (RWJMS) Medically Unexplained Physical Symptoms (MUPS) Research Center, which has been supported with over $4M in funding by the US National Institute of Mental Health (NIMH), is a member of the DSM-V Task Force. Dr Escobar serves as a Task Force liaison to the Somatic Symptom Disorders Work Group and works closely with this group.

2008 Special Report by Marin and Escobar: "Unexplained Physical Symptoms What's a Psychiatrist to Do?" Psychiatric Times. Vol. 25 No. 9, August 1, 2008: http://www.psychiatrictimes.com/display/article/10168/1171223

 

[Dx Revision Watch]

I have been in touch with The Academy of Psychosomatic Medicine to see whether transcripts might be available in order to set the slides into better context, but The Academy of Psychosomatic Medicine does not have transcripts and can only suggest contacting Creed and Wulsin.

 

[flybro]

Suzy are there any other [atient groups with their eye on the ball with this.

You seem to be ahead of the game with this.

It is a really really big deal, I don't pretend to understand it all, but I can see it is very wide reaching, and appears to have been in the pipeline for a very long time. I almost feel as though the ME community have been the puilot study for it.

If our experiences of medical care is going to become the Gold Standard for all undiagnosed, people with medically 'unexplained' sysmptoms, then it is really scarry.

People with our experience have learnt that a medically unexplained sysmptom stays that way until science can explain it. Once science has explained it we should get a diagnosis and medical help.

However as many of the tests that would verify a medical explanation of our sysmptoms are with held, we are kept in this dangerous CFS diagnosis dustbin. Where it is cheap to keep us, and seemingley legal to with hold medical testing and treatment.

And now using a play on words it appears as though this is trying to be rolled out globally for all people that don't fit the narrow band of 'normal'.

I hope you are getting help with this, it is a major big big deal, Globally.

If you're not, then more power to ya.

 

[Dx Revision Watch]

http://www.apm.org/ann-mtg/2009/presenter-slides/HackettAward-creed.pdf

183 slides in all (though some are repeated).

#16

#26

#117

 

[Dx Revision Watch]

Suzy are there any other [atient groups with their eye on the ball with this.

You seem to be ahead of the game with this.

flybro,

I have been researching and monitoring the DSM and ICD-10 revision processes since February, last year.

This work resulted out of (and has run parallel with) research into the CISSD Project, the existence of which had been known since early 2007, but about which Action for M.E. (the CISSD Project's principal administrators), had published virtually nothing - just a couple of incomprehensible lines in their Annual Report and Accounts.

We now know considerably more about this project and in October, last year, Action for M.E. published copies of reports handed to them by Dr Sykes, in December 2007, on the project's completion. Action for M.E. also published an article about the CISSD Project in InterAction magazine written not by Dr Sykes, but by Dr Derek Pheby. The article made no reference to the members of the Project, or that they were all drawn from the fields of liaison psychiatry and psychosomatics or that the project's UK chair had been Prof Michael Sharpe.

Dr Richard Sykes had initiated and undertaken the CISSD Project between 2003 and 2007 under the misconception that Chronic Fatigue Syndrome was not included anywhere within ICD-10. (I am still waiting for Action for M.E. to obtain an erratum note from Dr Sykes to add to the front of file of this report and to correct other errors relating to coding.)

This misconception only came to light in June, last year, when a copy of the report on the CISSD Project given to Action for M.E. in 2007 by Dr Sykes, made its way into the public domain. There is a considerable amount of material and commentary about the CISSD Project on my ME agenda site which will, in due course, be archived on my new Dx Revision Watch site.

Periodically, I have sent material around the DSM-5 revision, the CISSD Project, the work of the EACLPP MUS Study Group (including a copy of the MUS Study Group Draft White paper, authored by Creed, Fink and Henningsen) to all the main UK patient orgs:

My last "Elephant in the Room Series" posting: DSM-V: What do we know so far? was 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.

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

https://sites.google.com/site/icd11revision/home/documents

In the 11 or so months that I have been raising awareness around the forthcoming revisions of DSM and ICD-10, would you like to guess how many responses I have received from any of the above in response to the material I have brought to their attention?

0

Not a single expression of interest from any of them - except from Dr Ellen Goudsmit (now psychology adviser to the ME Association) who has repeatedly sought to discourage me from raising awareness of these revision processes, on Co-Cure and elsewhere.

Suzy

 

[flybro]

In the 11 or so months that I have been raising awareness around the forthcoming revisions of DSM and ICD-10, would you like to guess how many responses I have received from any of the above in response to the material I have brought to their attention?

0

Not a single expression of interest from any of them - except from Dr Ellen Goudsmit (now psychology adviser to the ME Association) who has repeatedly sought to discourage me from raising awareness of these revision processes, on Co-Cure and elsewhere.

The complexity of it makes it difficult to understand.

I know you are really busy with this, but is there any chance you can do a piece on 'How this affects me', ('me' being any patient with unexplained medical symptoms).

Along with a 'What you can you do about it piece'.

I really do think this is more dangerous than HIV, and XMRV, its a way of circumventing human rights. Having people with unexplained symptoms labled with a pysch lable means that treatment and investigation can be withheld legally.

It also means that people with the lable would be easier to have sectioned under the mentle health act. Which in the UK is being tweaked behind closed doors, to allow sectioning with the signature of only one Doc.

Don't go to the Docs with a headache more than twice in a year for Gods sake.

I'm not sure but I think I also read that mental health patients and children can be given experimental drugs without consent or knowledge of them being administered.

 

[Dx Revision Watch]

ICD-11 and DSM-V focussed editorials and articles in Advances in Psych Treatment

ICD-11 and DSM-V (DSM-5) focussed editorials and articles in January 2010 edition of Advances in Psychiatric Treatment

Shortlink: http://wp.me/pKrrB-up

In the January 2010, Volume 16, Issue 1 edition of Advances in Psychiatric Treatment there are two editorials and two articles around ICD-11 and DSM-V (DSM-5) revision classificatory issues.

The Bouch editorial commentary, the Sartorius editorial and the Thornicroft et al article all mention chronic fatigue syndrome.

[Subscription or payment required for access to full editorials and articles.]

FROM THE EDITOR
Joe Bouch
Classification
Adv. Psychiatr. Treat., Jan 2010; 16: 1.

[No abstract available]

.Nevertheless, as diagnosis is intended to be one of the strongest assets of a psychiatrist (Tyrer 2009), clinicians need to think about and be involved in the forthcoming revisions and harmonisation of the two major classifications ICD and DSM. Sartorius (pp. 2-9) gives a behind-the-scenes view of the revision process. There are many vested interests: not just clinicians, but governments and NGOs, lawyers, researchers, public health practitioners, Big Pharma and patient groups. Vast sums are at stake everything from welfare benefits and compensation claims to research budgets. Concerns include the use of national classifications to facilitate political abuse and of diagnostic labels that are seen as stigmatising or are used to stigmatise. Like Sartorius, Thornicroft (pp. 53-59) singles out chronic fatigue syndrome, bitterly contested in terms of its status as a physical, psychiatric or psychosomatic condition and viewed by healthcare staff as a less deserving category.

Should the classifications use categories or dimensions? A dimensional approach seems impractical, although dimensions could be used to augment categorical definitions, as with severity of depression​

Advances in Psychiatric Treatment (2010) 16: 2-9. doi:
10.1192/apt.bp.109.007138

Editorial: Norman Sartorius

Revision of the classification of mental disorders in ICD-11 and DSM-V: work in progress

In ICD-10 (World Health Organization 1992a), the chapter dealing with mental disorders contains several categories that appear in other chapters as well. Thus, dementia can be found in the chapter of mental disorders, because of its predominantly psychiatric symptoms, and in the chapter of neurological diseases, because it is a brain disease that can be the cause of death. A number of the psychiatric syndromes that occur in the course of other diseases are listed in the chapter of mental disorders as well as in chapters describing other conditions. For example, general paresis is listed in the chapter of mental disorders and in the chapter dealing with syphilis and other contagious diseases. Some of the categories that one would expect to find in a chapter devoted to mental disorders have been placed elsewhere, mainly because of pressures exerted by those who did not want to be labelled by any particular psychiatric diagnosis. Thus, for example, chronic fatigue syndrome, which was listed together with neurasthenia for a long time, is now in the chapter containing infectious diseases which are supposed to be causing it*, and premenstrual dysphoric states are in the chapter dealing with gynaecological disorders

*Ed:Its unclear what Sartorius means, here:

Chronic fatigue syndrome is indexed in Volume 3: The Alphabetical Index to G93.3: Chapter VI: Diseases of the nervous system (G00-G99) > Other disorders of the nervous system (G90-99) > G93 Other disorders of brain > G93.3: Postviral fatigue syndrome; Benign myalgic encephalomyelitis.


Abstract:

Revision of the classification of mental disorders in ICD-11 and DSM-V: work in progress

Norman Sartorius

Norman Sartorius is President of the Association for the Improvement of Mental Health Programmes and holds professorial appointments at the Universities of London, Prague and Zagreb and at several other universities in the USA and China. Dr Sartorius was a member of the WHOs Topic Advisory Group for ICD-11 and a consultant to the American Psychiatric Research Institute, which supports the work on the DSM-V. He has also served as Director of the Division of Mental Health of the WHO and was the principal investigator of several major international studies on schizophrenia, on depression and on health service delivery. He is a past President of the World Psychiatric Association and of the Association of European Psychiatrists.

Correspondence: Correspondence Professor N. Sartorius, 14, chemin Colladon, 1209 Geneva, Switzerland. Email: sartorius@normansartorius.com

This editorial summarises the work done to prepare ICD-11 and DSM-V (which should be published in 2015 and 2013 respectively). It gives a brief description of the structures that have been put in place by the World Health Organization and by the American Psychiatric Association and lists the issues and challenges that face the two organisations on their road to the revisions of the classifications. These include dilemmas about the ways of presentation of the revisions (e.g. whether dimensions should be added to categories or even replace them), about different versions of the classifications (e.g. the primary care and research versions), about ways to ensure that the best of evidence as well as experience are taken into account in drafting the revision and many other issues that will have to be resolved in the immediate future.​

Advances in Psychiatric Treatment (2010) 16: 14-19. doi:
10.1192/apt.bp.109.007120

The classification of mental disorder: a simpler system for DSM-V and ICD-11

David Goldberg

Sir David Goldberg is Professor Emeritus and a Fellow of Kings College London. He has devoted his professional life to improving the teaching of psychological skills to doctors of all kinds, and to improving the quality of services for people with severe mental illness. After completing his psychiatric training at the Maudsley Hospital, he went to Manchester, where for 24 years he was Head of the Department of Psychiatry and Behavioural Science. In 1993 he returned to the Maudsley as Professor of Psychiatry and Director of Research and Development.

Correspondence: Correspondence Professor Sir David Goldberg, Institute of Psychiatry, Kings College London, De Crespigny Park, London SE5 8AF, UK. Email: David.Goldberg@iop.kcl.ac.uk

This article proposes a simplification to the chapter structure of current classifications of mental disorder, which cause unnecessary estimates of comorbidity and pay major attention to symptom similarity as a criterion for deciding on groupings. A simpler system, taking account of recent developments in aetiology, is proposed. There is at present no simple solution to the problems posed by the structure of our classification, but the advantages as well as the shortcomings of changing our approach to diagnosis are discussed.​

Related material in APT:

Advances in Psychiatric Treatment (2010) 16: 53-59. doi:
10.1192/apt.bp.107.004481

Discrimination against people with mental illness: what can psychiatrists do?

Graham Thornicroft, Diana Rose and Nisha Mehta

Other diagnostic groups also appear to be less popular with healthcare staff. Chronic fatigue syndrome is bitterly contested in terms of its status as a physical, psychiatric or psychosomatic condition and arouses controversy about its causation and treatment. People who have been given or assumed this diagnosis often describe experiences of rejection by both general and mental health staff Davidson 2005)

Discrimination against people with mental illness: what can psychiatrists do?

Graham Thornicroft, Diana Rose and Nisha Mehta

Graham Thornicroft is Professor of Community Psychiatry at the Institute of Psychiatry, Kings College London, and a consultant psychiatrist and Director of Research and Development at the South London and Maudsley NHS Foundation Trust. Diana Rose is a senior lecturer and Co-Director of the Service User Research Enterprise, Institute of Psychiatry, which conducts service-user led research in the field of mental health. Professor Thornicroft and Dr Rose are also members of the National Institute for Health Research Biomedical Research Centre at the South London and Maudsley NHS Foundation Trust/ Institute of Psychiatry, and are supported by the NIHR Sapphire Applied Research Programme. Nisha Mehta is a medical student at the School of Medicine, Kings College London, and is undertaking research related to stigma, discrimination and mental health.

Correspondence: Correspondence Professor Graham Thornicroft, Health Service and Population Research Department, Institute of Psychiatry, Kings College London, De Crespigny Park, London SE5 8AF, UK. Email: graham.thornicroft@kcl.ac.uk

This article discusses the evidence that experiences of stigmatisation and discrimination among people with mental illnesses are common and may be severe. Furthermore, there are growing concerns that people with mental illness receive second-class physical healthcare. Beyond this, some aspects of psychiatric practice are reported as being insensitive, disrespectful or even disabling. We consider whether such claims are justified and what psychiatrists can do, directly and indirectly, to reduce stigma and discrimination and improve our practice.​

Notes:

1] The APA now plans to publish draft proposals for changes to diagnostic criteria on 10 February. The Alpha Draft for ICD-11 is currently timelined for May 2010.

2] DSM-V Somatic Symptom Disorders Work Group proposals so far can be found at: Dx Revision Watch at: http://wp.me/PKrrB-hT

3] For detailed information on the proposed structure of ICD-11, the Content Model and operation of iCAT, the collaborative authoring platform through which the WHO will be revising ICD-10, please scrutinise key documents on the ICD11 Revision Google site:

https://sites.google.com/site/icd11revision/
https://sites.google.com/site/icd11revision/home/documents

 

[Dx Revision Watch]

In Revision of the classification of mental disorders in ICD-11 and DSM-V: work in progress, Sartorius writes:

In ICD-10 (World Health Organization 1992a), the chapter dealing with mental disorders contains several categories that appear in other chapters as well. Thus, dementia can be found in the chapter of mental disorders, because of its predominantly psychiatric symptoms, and in the chapter of neurological diseases, because it is a brain disease that can be the cause of death."​

Prof Peter Denton White mentioned the following in an Oxford workshop presentation, in December '08:

THE BRITISH NEUROPSYCHIATRY ASSOCIATION

Neurology and Psychiatry SpRs Teaching Weekend

12 to 14 December 2008 St Annes College Oxford

THE ESSENTIALS OF NEUROPSYCHIATRY

"...(Incidentally, this mess is not specific to CFS, since there are several conditions within the neurology chapter of ICD-10 that are also classified in the mental and behavioural disorders chapter. For instance, Alzheimers disease is classified within neurology, whereas dementia due to Alzheimers disease is classified under mental health. My personal view is that it is high time that all mental health disorders and neurological diseases affecting the brain were classified within the same chapter, simply called diseases/disorders of the brain and nervous system.).."​

http://www.bnpa.org.uk

http://bnpa.org.uk/doc/HANDBOOK.pdf

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

In a letter dated 16 October 2001, Dr B Saraceno, WHO HQ, Geneva, provided the following:

I wish to clarify the situation regarding the classification of neurasthenia, fatigue syndrome, post viral fatigue syndrome and benign myalgic encephalomyelitis. Let me state clearly that the World Health Organisation (WHO) has not changed its position on these disorders since the publication of the International Classification of Diseases, 10th Edition in 1992 and versions of it during later years.

Post viral fatigue syndrome remains under the diseases of the nervous system as G93.3. Benign myalgic encephalomyelitis is included within this category. Neurasthenia remains under mental and behavioural disorders as F48.0 and fatigue syndrome is included within this category. However, post viral fatigue syndrome is explicitly excluded from F48.0.

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." ​

In a response dated 23 January 2004, Andre lHours, WHO HQ, Geneva, provided the following:

This is to confirm that according to the taxonomic principles governing the Tenth Revision of the World Health Organizations International Statistical Classification of Diseases and Related Health Problems (ICD-10), it is not permitted for the same condition to be classified to more than one rubric as this would mean that the individual categories and subcategories were no longer mutually exclusive.​

This confirmation related to a contemporaneous issue concerning the WHO Collaborating Centre, Institute of Psychiatry, but the principle has significance for the Harmonization issue.

In responses from early 2009, Dr Robert Jakob, WHO Classifications, Terminology and Standards Team, reaffirmed that statements made in the past by Dr Saraceno and Mr lHours regarding coding and classification are still valid, adding that:

there is no evidence that any change should be made to this in ICD-11;
the same principles will apply to ICD-11.​

 

[starryeyes]

In the 11 or so months that I have been raising awareness around the forthcoming revisions of DSM and ICD-10, would you like to guess how many responses I have received from any of the above in response to the material I have brought to their attention?

0

Not a single expression of interest from any of them - except from Dr Ellen Goudsmit (now psychology adviser to the ME Association) who has repeatedly sought to discourage me from raising awareness of these revision processes, on Co-Cure and elsewhere.

Suzy

That's nuts! Why would there be a psych adviser to the ME Association? I am now thoroughly confused.

What can we do, if anything to change this state of affairs?

 

[Dx Revision Watch]

@ flybro

I'm not splitting hairs, here, but in order to provide you with meaningful responses, I do need to be clear about whom, specifically, you were referring to when you asked whether "there were any other patient groups with their eye on the ball with this."

As you know, ME agenda (and now, Dx Revision Watch) is not a patient group or an organisation - these are websites maintained by an individual. I can raise awareness but I do not undertake formal consultations with my readers and I cannot claim a mandate to speak on behalf of any interest group - patients or carers - so I do not call myself a "patient group".

I had assumed that by "patient groups" you meant our UK patient representation organisations.

So I set out that since last February, I have been keeping all our national patient orgs informed around DSM and ICD revision issues but that none of them had even acknowledged having had this material brought to their attention let alone responded positively to requests that our UK patient orgs need to be monitoring the revision of both these classification systems, participating in consultation processes with their members, issuing position statements in response to proposals and generally keeping their members informed.

Action for M.E. has been aware of the DSM and ICD revisions since they engulfed Westcare UK in mid 2002, when they inherited the administration of the CISSD Project as part of the "merger" deal. The ME Association has been aware of the DSM and ICD revision processes since at least April 2007.

In April 2007, the ME Association publicised the 2007 Melvin Ramsay Society Meeting:

http://www.meassociation.org.uk/content/view/203/70/

This annual meeting was attended by Dr Charles Shepherd, on behalf of the MEA, who presented an update on the NICE Guideline on CFS/ME. Dr Richard Sykes also gave a presentation at this Ramsay Society meeting titled the Conceptual issues in the classification of ME/CFS in which he reported on the work of the CISSD Project group. Dr Shepherd produced no summary report on this meeting but a report (in German) can be read here:

Report by Regina Clos at: http://www.cfs-aktuell.de/mai07_1.htm [ Auto Google translation of Regina Clos's report at: http://tinyurl.com/sykesgermantoenglish ]

So both Action for M.E. and the ME Association have already been aware of these forthcoming revisions for several years.

Your response was

The complexity of it makes it difficult to understand.

and you went on to ask was "there any chance I might do a piece on 'How this affects me', ('me' being any patient with unexplained medical symptoms). Along with a 'What you can you do about it piece'."

So you appear to have jumped from "patient group" activity to patients' response, with a suggestion for what might be produced for patients by way of a simple "What it means to you" and "What you can do about it."

By "patient groups", did you mean registered national patient representative orgs, local support groups (who exist to represent the interests of their members) and professionals who become involved in advocacy (or might be persuaded to become involved in responding in consultations) or did you mean informal internet support platforms, patient websites, Facebook sites and patients, themselves?

Because we are talking about two different target audiences whose need for information and the way that information is delivered are very different.

Suzy