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

[Dx Revision Watch]

ALERT: DSM-5 second public review period now running from May to 15 June

May be reposted in full or in part if source credited

I am resurrecting the existing DSM-5 thread in order that extensive previous material and comment is not lost. There was also discussion of DSM-5 on a second thread, here:

http://forums.phoenixrising.me/showthread.php?3062-DSM5-Ticket-back-to-Reevesville/page17

Please note that for a number of reasons, I no longer participate in these forums and I will not be monitoring this thread and won't be available to discuss the DSM-5 issue but I did feel that readers should be alerted to the following:


ALERT: The second Public Review of draft proposals for criteria and structure for DSM-5 is now open and runs from May to 15th June

This information was posted on Co-Cure mailing list, yesterday:

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1105a&L=co-cure&T=0&F&S&P=2584

Two attachments provided at foot of post.

Yesterday, 4 May, the American Psychiatric Association (APA) announced that a second public review period will run from May to 15 June. This is a revision of its Timeline, as it had stood in March, which had scheduled a public review exercise for August to 30 September.

There has been some media coverage of the APA's announcement here:

http://www.medpagetoday.com/Psychiatry/DSM-5/26275

http://thechart.blogs.cnn.com/2011/05/04/psychiatry-bible-structure-overhauled/


The DSM-5 site was updated yesterday with announcements and revised proposals (dated May 4, 2011) across all categories.

The current review period closes on 15th June - just six weeks away.

Note that this is a public and stakeholder review and feedback exercise and not restricted to professionals or members of the American Psychiatric Association.

There is a Task Force announcement here:

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

"What Specifically Has Changed on This Site?

"You will notice several changes to this Web site since we first launched in February 2010. Numerous disorders contain updated criteria...

"...Is There Opportunity to Provide Further Comments?

"At this time, we are asking visitors to review and comment on the proposed DSM-5 organizational structure and criteria changes. Please note that the current commenting period will end on June 15, 2011. It is important to remember that the proposed structure featured here is only a draft. These proposed headings were reviewed by the DSM-5 Task Force in November 2010...

"...The content on this site will stay in its current form until after completion of the DSM-5 Field Trials, scheduled to conclude later this year. Following analysis of field trial results, we will revise the proposed criteria as needed and, after appropriate review and approval, we will post these changes on this Web site. At that time, we will again open the site to a third round of comments from visitors, which will be systematically reviewed by each of the work groups for consideration of additional changes. Thus, the current commenting period is not the final opportunity for you to submit feedback, and subsequent revisions to DSM-5 proposals will be jointly informed by field trial findings as well as public commentary.

"We look forward to receiving your feedback during the coming weeks and appreciate your participation in this important process."


There are brief notes on the proposed DSM-5 Organizational Structure here:

http://www.dsm5.org/proposedrevision/Pages/proposed-dsm5-organizational-structure.aspx


The Recent updates page is here:

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


The latest revisions for "Somatic Symptom Disorders" are here:

http://www.dsm5.org/ProposedRevision/Pages/SomaticSymptomDisorders.aspx

"Somatic Symptom Disorders

"Please find below a list of disorders that are currently proposed for the diagnostic category, Somatic Symptom Disorders. This category contains diagnoses that were listed in DSM-IV under the chapter of Somatoform Disorders. The Somatic Symptom Disorders Work Group has been responsible for addressing these disorders. Among the work group's recommendations is the proposal to rename this category Somatic Symptom Disorders. Because the current terminology for somatoform disorders is confusing and because somatoform disorders, psychological factors affecting medical condition, and factitious disorders all involve presentation of physical symptoms and/or concern about medical illness, the work group suggests renaming this group of disorders Somatic Symptom Disorders. In addition, because of the implicit mind-body dualism and the unreliability of assessments of "medically unexplained symptoms," these symptoms are no longer emphasized as core features of many of these disorders. Since Somatization Disorder, Hypochondriasis, Undifferentiated Somatoform Disorder, and Pain Disorder share certain common features, namely somatic symptoms and cognitive distortions, the work group is proposing that these disorders be grouped under a common rubric called Complex Somatic Symptom Disorder. Furthermore, the diagnosis of Factitious Disorder can now be found under the diagnostic chapter Other Disorders. We appreciate your review and comment on these disorders.

J 00 Complex Somatic Symptom Disorder Updated May 4, 2011
http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=368

J 01 Simple Somatic Symptom Disorder Updated May 4, 2011
http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=491

J 02 Illness Anxiety Disorder Updated May 4, 2011
http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=10

J 03 Functional Neurological Disorder (Conversion Disorder) Updated May 4, 2011
http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=8

J 04 Psychological Factors Affecting Medical Condition Updated May 4, 2011
http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=387

J 05 Other Specified Somatic Symptom Disorder
http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=541

J 06 Unspecified Somatic Symptom Disorder
http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=12

----------

Revised proposals for criteria for CSSD:

J 00 Complex Somatic Symptom Disorder:

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

The key "Disorder Description" PDF document has undergone some revisions (highlighted in yellow) since the last version (which was dated January 2011) and is now dated "DRAFT April 18, 2011". There are no highlighted changes for the sections for "Complex Somatic Symptom Disorder" (CSSD) or the more recent, additional proposal for a category called "Simple Somatic Symptom Disorder" (SSSD).

It is this latest version of the PDF that should be referred to and not the version that was published last year at the time of the first public review and feedback.

PDF: "Somatic Symptom Disorders"
http://www.dsm5.org/Documents/Somatic/Somatic Symptom Disorders description April 18, 2011.pdf


Rationale for

J 00 Complex Somatic Symptom Disorder:
http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=368#

The key "Justification of Criteria" Rationale PDF document has undergone some revisions (highlighted in yellow) since the last version and is now dated "DRAFT 4/18/11". Again, there are no highlighted changes for the section for "Complex Somatic Symptom Disorder" or "Simple Somatic Symptom Disorder".

Again, it is this latest version of the PDF that should be referred to and not the version that was published last year at the time of the first public review and feedback.

http://www.dsm5.org/Documents/Somatic/DSM Validity Propositions 4-18-11.pdf


The link for the "J01 Simple Somatic Symptom Disorder" page with criteria is here:
http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=491



I shall be posting this information on my Dx Revision Watch site, later today, together with the two key PDF documents, and have also posted on selected Facebook sites.

Other than that, because of personal commitments I am not going to be in a position, this year, to undertake awareness raising for this second public DSM-5 draft criteria on international forums.


If you want to see (or remind yourself) what comments were submitted last year, copies of international patient organization submissions for the first DSM-5 public and stakeholder review are collated on this page of my site, together with selected patient and advocate submissions:

DSM-5 Submissions: http://wp.me/PKrrB-AQ or http://wp.me/PKrrB-AQ

Patient organisations, professionals and advocates submitting comments in this second DSM-5 draft proposal review process are once again invited to provide me with copies of their submissions for publication on my site.


Last year, registration was required in order to submit comment via the DSM-5 Development website and you can register to submit comment to the "Somatic Symptom Disorders" Work Group on this page:

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

A third review and feedback period is currently scheduled for January-February 2012, for two months, following field trials and revisions.

Suzy Chapman

 

[Dx Revision Watch]

Following on from previous post:

As the second public review of DSM-5 draft criteria and structure was not anticipated until August-September, the following organizations and advocates have been alerted, today, to yesterday's announcement by the APA and have also been sent copies of the two key PDF documents.


UK

Action for M.E.
ME Association
TYMES Trust
AYME
Invest in ME
BRAME
25% ME Group
RiME
MERUK and Sue Waddle

International

Jennie Spotila (CFIDS)
Lenny Jason
Kenneth Friedman (Vermont CFIDS Association)
Alan Gurwitt (Mass. CFIDS/ME & FM)
Fred Friedberg (IACFSME)
Chris Hunter (AHME)
ESME
ME-CFS Denmark
Judy Mikovits (WPI)

The submissions of a number of the above to the previous public review and feedback exercise (held in February to April 2010) can be read at:

http://wp.me/PKrrB-AQ

Suzy Chapman

 

[Sing]

Thank you, Suzy. This makes my blood boil!

Calling ME-CFS a "somatoform disorder", its symptoms "somatic", is a fundamental betrayal of us, in my opinion. I wrote in last year to try to counteract this aggressive, dishonest action.

The long history of psychiatric abuses is criminal. Their errors of the past are apparent even to many of them today, and yet here they continue on to make the same kind of false attributions about patients simply because our illness is not yet understood by the medical community.

If an intelligent, well funded effort at research were undertaken instead, we would have a lot more answers. But as the "territory" of our illness is undefined as yet, the psychiatrists can claim it and take it over as their own, justifying and legitimizing themselves as the superior judges of others, those with "the last word".

Alzheimer's disease was originally thought of as a form of insanity too, a somatic, psychiatric ailment. Now it is washing over older adults like a giant tsunami and is finally legitimized as a physically-based disease. Surprise, surprise! Why is this lesson never learned until untold numbers of people have suffered in shame and without any kind of appropriate help?

I frankly don't think we need to justify ourselves; I think the psychiatrists ought to have to justify themselves. I think they ought to have to account for their record of false diagnoses, shaming, destructive treatments and destructive neglect. These social judges, masquerading as scientists and doctors, ought to have been brought up before a court of law for any number of past and present abuses. These are the liars, the factitious ones, who turn physical symptoms, solely by their words, into imaginary, psychological ones. They are the ones who ought to have to prove their case!

 

[Dx Revision Watch]

What the SSD Work Group is proposing

Calling ME-CFS a "somatoform disorder", its symptoms "somatic", is a fundamental betrayal of us, in my opinion. I wrote in last year to try to counteract this aggressive, dishonest action.

Sing, I've said that I would not be contributing further to this thread but I do need to comment on what you've written above.

There is no reference to ME or to "Chronic fatigue syndrome" in the proposals of the "Somatic Symptom Disorders" Work Group.

Neither ME nor Chronic fatigue syndrome (nor IBS nor Fibromyalgia) are referred to as a "somatoform disorder".

"Somatic" means "bodily" or "of the body" - it does not mean "somatization".


There is a reference to IBS and to Fibromyalgia in the "Disorder Description" PDF document that accompanies the proposals, where it states:

"Somatic Symptom Disorders

"Introduction

"This group of disorders is characterized predominantly by somatic symptoms or concerns that are associated with significant distress and/or dysfunction. Somatic symptoms are common in every day life and medical practice. Such symptoms may be initiated, exacerbated or maintained by combinations of biological, psychological and social factors. The diagnostic criteria are applicable across the lifespan, even though developmental differences in the presentation and phenomenology of somatic symptom disorders may exist.

"These disorders typically present first in non-psychiatric settings and somatic symptom disorders can accompany diverse general medical as well as psychiatric diagnoses. Having somatic symptoms of unclear etiology is not in itself sufficient to make this diagnosis. Some patients, for instance with irritable bowel syndrome or fibromyalgia would not necessarily qualify for a somatic symptom disorder diagnosis. Conversely, having somatic symptoms of an established disorder (e.g. diabetes) does not exclude these diagnoses if the criteria are otherwise met."

"Complex Somatic symptom disorder (CSSD)

"This disorder is characterized by a combination of distressing (often multiple) symptoms and an excessive or maladaptive response to these symptoms or associated health concerns. The patient's suffering is authentic, whether or not it is medically explained. Patients typically experience distress and a high level of functional impairment. The symptoms may or may not accompany diagnosed general medical disorders or psychiatric disorders. There may be a high level of medical care utilization, which rarely alleviates the patient?s concerns. From the clinician's point of view, many of these patients seem unresponsive to therapies, and new interventions or therapies may only exacerbate the presenting symptoms or lead to new side effects and complications. Some patients feel that their medical assessment and treatment have been inadequate.

"Patients with this diagnosis typically have multiple, current, somatic symptoms that are distressing; sometimes, they may have only one severe symptom. The symptoms may or may not be associated with a known medical condition..."​

and from the "Rationale" PDF document:

"This is a major change in the diagnostic nomenclature, and it will likely have a major impact on diagnosis. It clarifies that a diagnosis of CSSD is inappropriate in the presence of only unexplained medical symptoms. Similarly, in conditions such as irritable bowel syndrome, CSSD should not be coded unless the other criterion (criterion Battributions, etc) is present."​

​

Although Chronic fatigue syndrome is not mentioned, per se, it was mentioned in an earlier Work Group report and we can assume that CFS would also be perceived by the Work Group as a condition presenting with "somatic (ie bodily) symptoms of unclear etiology" and as one of the so-called "Functional Somatic Syndromes".

What this Work Group is proposing is to eliminate the concept of "medically unexplained" to diminish "mind/body dualism" in order that any illness or disorder or condition might qualify for an additional bolt-on diagnosis of a "somatic symptom disorder" if the criteria for a diagnosis of SSD were considered to be met.

So under these proposals, all medical diseases and disorders, whether "established general medical conditions or disorders" like diabetes or conditions presenting with "somatic symptoms of unclear etiology" would have the potential for the application of an additional diagnosis of a "somatic symptom disorder".

So they are proposing the potential for, for example:

diabetes + SSD, heart failure + SSD, spinal injury + SSD, hypertension + SSD, IBS + SSD, CFS + SSD, and so on.


The issue is not that the DSM-5 SSD Work Group is proposing to code or classify for ME or CFS, per se.

They are not proposing to do so.

The issue is not that the DSM-5 SSD Work Group is proposing to call CFS and ME a "Somatoform Disorder".


What they are proposing is the potential for the application of an additional diagnosis of an SSD for all illness, disorders or conditions, whether psychiatric, "medically unexplained" or medically explained.

And CFS and ME, and IBS and FM and a number of other patient groups, may be especially vulnerable to highly subjective criteria and difficult to quantify constructs such as "disproportionate distress and disability", "catastrophising", "health-related anxiety", "[appraising] bodily symptoms as unduly threatening, harmful, or troublesome" with "health concerns [that] may assume a central role in the individuals life, becoming a feature of his/her identity and dominating interpersonal relationships."

These proposals would have the potential for bringing many more patients under a mental health banner and expanding markets for psychiatric services, antidepressants, antipsychotics and behavioural therapies such as Cognitive Behavioural Therapy (CBT) for the "modification of dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors" for all patients with somatic (ie bodily) symptoms, irrespective of cause or whether etiology has been established (or recognised).


So when submitting email comment and feedback to the DSM-5 SSD Work Group via the online submission procedure, we need to focus on the potential for misapplication of an additional Dx of SSD for these particularly vulnerable patient groups and the implications for patients of misapplication.



Slides taken from an earlier posting on Dx Revision Watch (no unauthorized reproduction):

*Note that the most recent proposals on the DSM-5 website propose to place "Factitious Disorder" under a new section called "Other Disorders":

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

Other Disorders

Please find below a list of disorders that are currently proposed for the diagnostic category, Other Disorders. This category contains new diagnoses that were not listed in DSM-IV, such as those related to Self-Injury. The Childhood and Adolescent Disorders Work Group has been responsible for addressing the diagnosis, Non-Suicidal Self Injury, while the Mood Disorders Work Group developed draft criteria for the diagnosis, Suicidal Behavior Disorder. This category also includes Factitious Disorder, which was previously located in DSM-IV under the chapter Somatoform Disorders and is the responsibility of the Somatic Symptoms Disorders Work Group, and Other Substance-Induced Disorder, which was previously located in DSM-IV under the chapter Substance-Related Disorders and is the responsibility of the Substance-Related Disorders Work Group. We appreciate your review and comment on these disorders.


V 01 - 05 Self-Injury
V 01 Non-Suicidal Self Injury

V 06 Factitious Disorder
Factitious Disorder ​

 

[beckster]

Thanks Suzy for your work and updates and clarification.

Looks like they have addressed the input/ciritiques in an even "smarter" way!!!!!!!!

By using the bolt-on concept, even a person with a known physical etiology (say RA) could still be considered a malingerer because they might be displaying someone's vague notion of exaggerated distress or disability or limited functioning. One could be deemed to be able to work part time, or full time, when one actually could not. Not only could this, as you say, widen the doors for who is suited/mandated for psych meds or CBT etc treatments, it could also conversely limit what physiological treatments one is elgible for (which would be offered, paid for etc) such as anti-virals, anti-microbials, etc. It's brilliant because of the bolt-on approach almost every single illness gets under this umbrella (potentially).

Of course workman comp and private disability insurance will have a hayday with this, as with med insurance in general. It benefits cook-book based approaches to treatments, and can be used so handily to deny expensive but effective treatments. Really brilliant. (Pathetic, but brilliant).

 

[Dx Revision Watch]

Registering to comment

Thanks Suzy for your work and updates and clarification.

Looks like they have addressed the input/ciritiques in an even "smarter" way!!!!!!!!

By using the bolt-on concept, even a person with a known physical etiology (say RA) could still be considered a malingerer because they might be displaying someone's vague notion of exaggerated distress or disability or limited functioning. One could be deemed to be able to work part time, or full time, when one actually could not. Not only could this, as you say, widen the doors for who is suited/mandated for psych meds or CBT etc treatments, it could also conversely limit what physiological treatments one is elgible for (which would be offered, paid for etc) such as anti-virals, anti-microbials, etc. It's brilliant because of the bolt-on approach almost every single illness gets under this umbrella (potentially).

Of course workman comp and private disability insurance will have a hayday with this, as with med insurance in general. It benefits cook-book based approaches to treatments, and can be used so handily to deny expensive but effective treatments. Really brilliant. (Pathetic, but brilliant).

Absolutely, beckster. And as I've written in an earlier post on Dx Revision Watch site -

"Under the guise of eliminating stigma and eradicating terminology [that] enforces a dualism between psychiatric and medical conditions the American Psychiatric Association (APA) appears hell bent on colonising the entire medical field by licensing the application of a mental health diagnosis to all medical diseases and disorders."

I will have the latest key documents (which are already posted in this thread as PDFs) and the criteria up on my site over the weekend.

The News Release issued by the APA on 4 May is here:

http://tinyurl.com/APAnewsrelease4may11

Release No. 11-27

4 May 2011


Registration

The Registration to submit comment form is on the DSM-5 Development Home Page and on each of the category Criteria pages. You can register in advance, then use your username and password to log in and prepare and upload your submission at a later date, but remember the feedback period closes on 15 June.


I've just checked and my Log in name and password from last year has been retained.

Having registered with username, name, email and country, a password will be issued.

Login in and go to this page:

http://www.dsm5.org/ProposedRevision/Pages/SomaticSymptomDisorders.aspx

Then click on a category, for example,

J 00 Complex Somatic Symptom Disorder

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

Underneath the Criteria is a WYSIWYG editor. I would recommend composing your comment in a draft email or word processor first and saving a copy, as last year, some people found the Captcha characters hard to read and the uploading procedure glitchy - so please save a copy first. External links can be included but there is no facility for including attachments.

There is no maximum word or character length specified, but the 25% ME Group submitted a 12 page comment, last year. (This is no longer available at the URL given on my site as the 25% ME Group has redesigned its website. I will endeavour to establish the new URL.)


Copies of submissions from last year's feedback are collated on my site here:

DSM-5 submissions: http://wp.me/PKrrB-AQ

Whittemore Peterson Institute
Steungroep CFS Netherlands
CFS Associazione Italiana
ME Association (the MEA did not submit as an organization but publicly endorsed the submission of Dr Ellen Goudsmit)
Action for M.E.
Invest in ME
Mass. CFIDS/ME & FM
The CFIDS Association of America
Vermont CFIDS Association
IACFSME
The 25% ME Group

plus a number of submissions from patients and patient advocates who had given permission for me to publish.

I will start a new page on my site for this year's submission from patient orgs, patients and advocates who forward a copy to me with permission to publish.

--------

On the subject of the use of the word somatic, Angela Kennedy published this note, in June 2009:

"Ive noticed for some time that various people have been using the term somatic as if it signified a psychosomatic or psychogenic condition.

This is incorrect. The OED definition of somatic is of or relating to the body, especially as distinct from the mind (my italics). The word comes from the Greek soma meaning body.

Even when proponents of psychogenic explanations (its in your mind, youre imagining it, misinterpreting it, faking it, caused it by your own beliefs etc. etc. etc.) use the term somatic illness they actually do mean an illness of the body. They may then claim this somatic (or bodily illness) is caused by psychological dysfunction, but the word somatic does not mean illness caused by psychological dysfunction. It merely means illness of a body, or a bodily illness.

It is important that this word is used correctly, especially when people write to the media, government, the medical establishment etc. Otherwise we are in danger of seeing apparent objections published, from advocates, to saying ME/CFS is a bodily illness, purely because someone has used the word somatic incorrectly!"

Suzy

 

[Dx Revision Watch]

Three commentaries on Psychology Today on DSM-5 by Paula J. Caplan, Ph.D.

Paula J. Caplan, Ph.D., a clinical and research psychologist, is an Affiliate at Harvard University's DuBois Institute and a Fellow at the Women and Public Policy Program in Harvard's Kennedy School of Government.


1 Diagnostic Manual Authors Claim Openness but Reject Transparency

Published on May 2, 2011 by Paula J. Caplan, Ph.D. in Science Isn't Golden

What? Psychiatrists Now Define Openness"? (Part 1)

http://www.psychologytoday.com/blog...what-psychiatrists-now-define-openness-part-1

Copyright 2011 Paula J. Caplan All rights reserved


2 What? Psychiatrists Now Define Openness? (Part 2)

The Inside Story of Our Conference Call with the DSM-5 Heads

Published on May 4, 2011 by Paula J. Caplan, Ph.D. in Science Isn't Golden

http://www.psychologytoday.com/blog...what-psychiatrists-now-define-openness-part-2

Copyright 2011 Paula J. Caplan All rights reserved


3 DSM-5 Heads New Comments Reveal Lack of Compassion and of Respect for Science

Human costs, critical thinking about psychiatric diagnosis too often ignored

Above all else, can we consider the human costs?

Published on May 5, 2011 by Paula J. Caplan, Ph.D. in Science Isn't Golden

http://www.psychologytoday.com/blog...ts-reveal-lack-compassion-and-respect-science

Copyright 2011 Paula J. Caplan All rights reserved

 

[Enid]

Quite agree Suzy - "hell bent on colonising the entire medical field" pretty well sums it up !.

 

[Sing]

Thanks a million for your clarifications and precise work, Suzy. I too really appreciate your saying, "And as I've written in an earlier post on Dx Revision Watch site -

"Under the guise of eliminating stigma and eradicating terminology [that] enforces a dualism between psychiatric and medical conditions the American Psychiatric Association (APA) appears hell bent on colonising the entire medical field by licensing the application of a mental health diagnosis to all medical diseases and disorders"

The psychiatrists are sophisticated wordsmiths, indeed, and I also believe "hell bent on colonising the entire medical field".

Though this is not the right place for the following fight, it is the same fight--Many in the "Alternative Medicine" and "Holistic Therapy" field also try to drive everyone into the same corral, so that physical complaints are then treated as if they were psychological or spiritual problems, where, if you don't get well from their approaches, it only proves that you are continuing to hold onto your psychological and spiritual problems. I am sure there is a term in the field of logic for this kind of false, circular argument.

Anyway, it is great that people like you can fight back with an equally sophisticated understanding and use of language to protect those with physical problems in order that we may receive appropriate physical treatments for them.

 

[In Vitro Infidelium]

Anyway, it is great that people like you can fight back with an equally sophisticated understanding and use of language to protect those with physical problems in order that we may receive appropriate physical treatments for them.

M.E Agenda and associated pages are a profoundly important resource for M.E/CFS and Suzy Chapman deserves much thanks from those of us affected by the illness for creating and maintaining it. But lets not put Suzy and anyone else who makes such efforts, in the position of being lone activists. The articulation of the problems that DSM-5 presents needs to come from a broad citizen base and to be directed not just toward the APA but to politicians as well.

M.E/CFS concern about psychiatry has been very focussed on a few UK psychiatrists and to a lesser extent the US CDC. While UK psychiatry may have had a disproportionate influence on the conceptual modelling of M.E/CFS, the US remains the power centre of global psychiatric practice and in consequence it is the APA, via the DSM, that acts as the definitive source of psychiatric definition. The consequences of what the APA is now proposing are far reaching and need to be addressed at a societal level not just within a closed 'unionised shop', in the US the implications for health care are immense. Oustide the US, it must raise questions about the use of the DSM as an unquestioned reference work, certainly the implications of the DSM-5 proposals for UKs NHS appear to be significant.

Challenging the DSM-5 proposals will required broad alliances involving advocacy bodies representing multiple health interests those forum readers who are members of CFS advocacy groups should now actively encourage those organisations to act over DSM-5.

IVI

 

[Dx Revision Watch]

Thank you for your kind words, IVI.

All major UK national ME and CFS organizations were alerted on 5 May, the day after the posting of the revised criteria on the DSM-5 Development website.

They have been sent links for the latest proposals and copies of two key DSM-5 documents: the Disorder Descriptions and Rationale documents. There have been revisions to the criteria and to the text of these two key documents since the first stakeholder review, last year, and organizations will need to review these most recent proposals, not rely on the documents they were provided with last year.

A list of those who were contacted last week is posted in Post #182:

http://forums.phoenixrising.me/show...-ICD-in-the-US&p=176778&viewfull=1#post176778


I have asked the MEA, this morning, if it would confirm whether it is intends to submit comment, this year.

In a couple of weeks time, I shall be contacting all those who have already been sent an alert for confirmation of their intentions.

If advocates are lobbying patient organizations or others to participate in this stakeholder review and receive confirmation that an organization/other body/individual does intend to make a submission, I'd be grateful if they could let me know off list.

Suzy Chapman

me.agenda@virgin.net
http://dxrevisionwatch.wordpress.com
http://meagenda.wordpress.com
http://www.facebook.com/MEagenda
http://twitter.com/MEagenda

 

[Dx Revision Watch]

New posts on DSM-5 and ICD-11 Watch site

New posts on Dx Revision Watch site.

What are the latest proposals for DSM-5 Somatic Symptom Disorders categories and why are they problematic? (Part 2): http://wp.me/pKrrB-13z

Part 1 of this report can be read here in Post #75: http://wp.me/pKrrB-12P

In the first part of this report, I addressed some of the queries that have been raised around the second public review of proposals for the revision of DSM categories and diagnostic criteria. Stakeholder feedback is being accepted now until 15 June and Ill be giving more information on how to submit feedback via the DSM-5 Development website in a forthcoming post.

In this post, I am setting out the latest proposals (dated 14 April 2011) from the DSM-5 Somatic Symptom Disorders Work Group, as published on the DSM-5 Development website, on 4 May. The next post will set out extracts from the two key documents that accompany these revised proposals and why ME and CFS patient representation organizations, patients and advocates need to register their concerns via this second public review.

Criteria proposals and rationales are expanded upon within the two key documents and the devil is in the detail. Patient organizations will need to review both documents, as changes have been made since last year. And if you are able to do so, I recommend that patients, carers and patient advocates read them, too.

At over a dozen pages long, the Rationale document (which is titled: Justification of Criteria Somatic Symptoms) looks potentially daunting, but the text is not as long as it appears since five or six pages of references are included at the end. Edits to the documents since the versions published in January, this year, have been highlighted by the Work Group in yellow.

Full post here

 

[Mya Symons]

Does anybody have contact information or an e-mail address we could send a letter to? Sorry if it is already posted here, I can't get focused enough to get through all the posts. If you can, can you post the contact info. again?

 

[Dx Revision Watch]

Does anybody have contact information or an e-mail address we could send a letter to? Sorry if it is already posted here, I can't get focused enough to get through all the posts. If you can, can you post the contact info. again?

I've PMd you Mya and the info about registration is in Post #186

Suzy

 

[Angela Kennedy]

Some background reading to the subject of DSM and its vagaries which might be useful:

Kutchins, H. Kirk, S. Making Us Crazy: DSM- The Psychiatric Bible and the Creation of Mental Disorders (1999) Constable, London.

Caplan, P.J. They say youre Crazy: How the Worlds Most Powerful Psychiatrists Decide Whos Normal (1995) Da Capo Press.

 

[Dx Revision Watch]

I've now added information about registering and submitting comment to my Dx Revision Watch site:

Second public review of draft proposals for DSM-5 criteria now open and runs from May to 15th June

1] What are the latest proposals for DSM-5 "Somatic Symptom Disorders" categories and why are they problematic? (Part 1)
Q and A. Shortlink Post #75: http://wp.me/pKrrB-12P

2] What are the latest proposals for DSM-5 "Somatic Symptom Disorders" categories and why are they problematic? (Part 2)
Shortlink Post #77: http://wp.me/pKrrB-13z

3] Registering to submit comment in the second DSM-5 public review of draft criteria
Shortlink to Post #78: http://wp.me/pKrrB-15q

 

[Dx Revision Watch]

http://www.latimes.com/health/la-he-psychiatry-dsm5-20110522,0,233329.story?page=1

A key diagnostic deadline draws near

Psychiatrists are in the thick of a years-long effort to produce the latest edition of the essential textbook for diagnosing mental illnesses, the DSM. They're dogged by controversies over 'new' conditions.

By Shari Roan, Los Angeles Times

May 22, 2011

 

[Dx Revision Watch]

Call for Action - Second DSM-5 public comment period closes June 15

From Suzy Chapman for http://dxrevisionwatch.wordpress.com


For immediate circulation to US and international ME and CFS patient organizations, clinicians, advocates

22 May 2011

Call for Action - Second DSM-5 public comment period closes June 15


The American Psychiatric Association's DSM-5 Task Force is accepting public comment on its latest proposals for the revision of diagnostic criteria for psychiatric disorders.

The deadline for stakeholder feedback is June 15.


Is this a US specific issue?

No. International input is also required. The Diagnostic and Statistical Manual of Mental Disorders (the DSM) is the primary diagnostic system in the US for defining mental disorders and used to a varying extent in other countries. The next edition of the manual, slated for publication in 2013, will inform health care providers and policy makers for many years to come. DSM-5 will shape international research, influence literature in the fields of psychiatry and psychosomatics and inform perceptions of patients' medical needs throughout the world.


What is being proposed?

The DSM-5 "Somatic Symptom Disorders" Work Group has responsibility for the revision of the DSM-IV "Somatoform Disorders" categories.

The Work Group is recommending renaming the "Somatoform Disorders" section to "Somatic Symptom Disorders" and combining existing categories "Somatoform Disorders", "Psychological Factors Affecting Medical Condition (PFAMC)" and possibly "Factitious Disorders" into one group.

("Somatic" means "bodily" or "of the body".)

The Work Group also proposes repackaging "Somatization Disorder", "Hypochondriasis", "Undifferentiated Somatoform Disorder" and "Pain Disorder" under a new category entitled "Complex Somatic Symptom Disorder" (CSSD). There is also a "Simple Somatic Symptom Disorder" (SSSD) and a proposal to rebrand "Conversion Disorder" as "Functional Neurological Disorder".

To meet the criteria for CSSD, criteria A, B, and C are necessary.

A. Somatic symptoms:
One or more somatic symptoms that are distressing and/or result in significant disruption in daily life.

B. Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least two of the following are required to meet this criterion:

(1) High level of health-related anxiety.
(2) Disproportionate and persistent concerns about the medical seriousness of ones symptoms.
(3) Excessive time and energy devoted to these symptoms or health concerns.

C. Chronicity: Although any one symptom may not be continuously present, the state of being symptomatic is chronic (at least 6 months).​

Where can I find the full criteria for "CSSD", "PFAMC" and other proposed categories?

Proposed criteria are set out on the DSM-5 Development site: http://tinyurl.com/Somatic-Symptom-Disorders

The CSSD criteria are here: http://tinyurl.com/DSM-5-CSSD

There are two key PDF documents here, "Disorders Descriptions" and "Rationale", which expand on the Work Group's proposals:

http://tinyurl.com/SSD-Disorders-Description

http://tinyurl.com/SSD-Justification-of-Criteria



Which patient groups might be hurt by these proposals?

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS). On Day One of the May 10-11 CFSAC meeting, CFSAC Committee discussed the implications of these proposals for CFS and ME patients as part of the agenda item around the proposed coding of CFS for ICD-10-CM. You can watch this section of the meeting (4hrs 27mins in from start of video) here:

http://nih.granicus.com/ViewPublisher.php?view_id=26


If the Work Group's proposals gain DSM Task Force approval, all medical diseases, whether "established general medical conditions or disorders" like diabetes or heart disease, or conditions presenting with "somatic symptoms of unclear etiology" will have the potential for a bolt-on diagnosis of a "somatic symptom disorder" - if the practitioner feels the patient meets the new criteria.


As discussed by CFSAC committee members, earlier this month, CFS, ME, Fibromyalgia and IBS patients, already diagnosed or waiting on a diagnosis, may be especially vulnerable to highly subjective criteria and difficult to quantify concepts such as "disproportionate distress and disability", "catastrophising", "health-related anxiety" and "[appraising] bodily symptoms as unduly threatening, harmful, or troublesome."

Other patient groups that are also bundled under the so-called "Functional somatic syndromes" and "medically unexplained" umbrellas, like Chemical Injury (CI), Chemical Sensitivity (CS), chronic Lyme disease and GWS, are highly vulnerable.


In a 2009 Editorial on the progress of the Work Group, the chair wrote that by doing away with the "controversial concept of medically unexplained", their proposed classification might diminish "the dichotomy, inherent in the 'Somatoform' section of DSM-IV, between disorders based on medically unexplained symptoms and patients with organic disease." The conceptual framework the Work Group proposes:

"...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."​

So under the guise of eliminating "medically unexplained" symptoms as a diagnostic criterion in order to diminish "stigma", eradicating "terminology [that] enforces a dualism between psychiatric and medical conditions" and language that is "divisive between patients and clinicians", the APA appears hell bent on colonising the entire medical field by licensing the potential application of a mental health diagnosis to all medical diseases and disorders, if the clinician considers that the patient's response to their bodily symptoms or their perceived level of disability is "disproportionate" or their coping styles, "maladaptive".


In its latest proposals, the Work Group writes:

"...Having somatic symptoms of unclear etiology is not in itself sufficient to make this diagnosis. Some patients, for instance with irritable bowel syndrome or fibromyalgia would not necessarily qualify for a somatic symptom disorder diagnosis. Conversely, having somatic symptoms of an established disorder (e.g. diabetes) does not exclude these diagnoses if the criteria are otherwise met."

"...The symptoms may or may not be associated with a known medical condition. Symptoms may be specific (such as localized pain) or relatively non-specific (e.g. fatigue). The symptoms sometimes represent normal bodily sensations (e.g., orthostatic dizziness), or discomfort that does not generally signify serious disease..."

"...Patients with this diagnosis tend to have very high levels of health-related anxiety. They appraise their bodily symptoms as unduly threatening, harmful, or troublesome and often fear the worst about their health. Even when there is evidence to the contrary, they still fear the medical seriousness of their symptoms. Health concerns may assume a central role in the individual's life, becoming a feature of his/her identity and dominating interpersonal relationships."​

These proposals could result in misdiagnosis of a mental health disorder or the misapplication of an additional diagnosis of a mental health disorder. There may be considerable implications for these highly subjective criteria for the diagnoses assigned to patients, for the provision of social care, the payment of employment, medical and disability insurance, the types of treatment and testing insurers are prepared to fund and the length of time for which insurers are prepared to pay out.

Dual-diagnosis may bring thousands more patients, potentially, under a mental health banner where they may be subject to inappropriate treatments, psychiatric services, antidepressants, antipsychotics and behavioural therapies such as CBT, for the "modification of dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors and promote more effective coping [with their somatic symptoms]."

Coding CFS in the "Signs, symptoms and ill-defined conditions" chapter of the forthcoming ICD-10-CM would also render CFS and ME patients more vulnerable to these DSM-5 Work Group recommendations that will provide another dustbin in which to shovel patients with so-called "medically unexplained" bodily symptoms.


Who should submit comment on these proposals?

All stakeholders are permitted to submit comment and the views of patients, carers, families and advocates are important. But evidence-based submissions from the perspective of informed medical professionals - clinicians, psychiatrists, researchers, allied health professionals, lawyers and other professional end users are likely to have more influence.

National and state patient organizations also need to submit comment.

To date, not one patient organization in the US or UK has confirmed to me that they intend to submit feedback, this year. So we need to lean heavily on our patient organizations to review these criteria.


Where can I read last year's submissions?

Copies of international patient organization submissions for the first DSM-5 public and stakeholder review are collated on this page of my site, together with selected patient and advocate submissions:

DSM-5 Submissions to the 2010 review: http://wp.me/PKrrB-AQ


How to comment:

Register to submit feedback via the DSM-5 Development website: http://tinyurl.com/Somatic-Symptom-Disorders

More information on registration and preparing submissions here: http://tinyurl.com/DSM-5-register-to-comment


What else can I do?

Use mailing lists, forums, blogs, websites and contacts to get this information out - especially platforms where clinicians, allied health professionals, medical lawyers and patient organization reps participate. Alert state and national ME, CFS, FM and IBS patient organizations to the deadline and lobby for their involvement.

This is the last alert I shall be sending out. Remember, the deadline is June 15.

Thank you.

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

Text and formatted versions of this document in Word .doc and PDF format will be available on my website.


Suzy Chapman
_____________________

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

 

[insearchof]

Hi Suzy

Thanks for this information, much appreciated.

Will there be a further opportunity for comment after 15th June 2011?

 

[Dx Revision Watch]

Hi Suzy

Thanks for this information, much appreciated.

Will there be a further opportunity for comment after 15th June 2011?

You're welcome, ISO, though I would have much preferred to have been in a position to post a collection of responses from international patient orgs, instead.

In answer to your question, yes, there is a third review period scheduled by the APA. This is an extract from the last section of the DSM-5 Timeline:

http://www.dsm5.org/about/Pages/Timeline.aspx

Timeline

[...[

March-April 2011: Work groups will make assignments as to who amongst their group will be responsible for drafting text for each of their disorders. Concurrently, DSM staff will create a secure, user-restricted online site for uploading, reviewing, and tracking draft chapter submissions.

March 2011-October 2012: Drafting of text for introductory chapters in DSM-5. Text for disorders not included in the DSM-5 Field Trials will be drafted first. Text for disorders under examination in the field trials will be completed after the work groups have received data from each of the field trials (see September-November 2011, below). Work groups will submit initial drafts, comments and suggestions will be provided by DSM leadership, and work groups will revise and resubmit as needed. The DSM-5 Task Force will have the opportunity to review all drafts before they are submitted to APA publishing (APPI) in December 2012.

November 30, 2012: Final draft text of DSM-5 due to APPI for preparation for publication.

June-October 2011: Data analysis of results from both types of field trials will occur primarily throughout September and October 2011. Data analysis from the large academic field trials will begin only when a site has fulfilled its total patient enrollment required. While some sites may complete data collection in the summer, a majority of data will not be available for analysis until the end of August. Data analysis from the RCP field trials will occur as individual clinicians complete their required study visits.

September-November 2011: Work groups will be provided with results from both field trials and will update their draft criteria as needed. Field trial results and revised proposals will be reviewed at the November Task Force meeting.

January-February 2012: Revised draft diagnostic criteria will be posted on www.dsm5.org and open to a third public feedback period for two months. Feedback will be shared directly with work group members, and further edits to proposals will be made as needed.

March-December 2012: Presentation of penultimate DSM-5 proposals to APA Board of Trustees; Task Force review of feedback from APA Governance bodies; final revisions by the APA Task Force; final approval by APA Board of Trustees; and submission to American Psychiatric Publishing, Inc.

May 18-22, 2013: The release of DSM-5 will take place during the APAs 2013 Annual Meeting in San Francisco, CA.​

This current review period has been around six weeks. The first review period was, I think, around ten weeks. This review period could have done with being at least a couple of months long to allow patient groups to present proposals to, and consult with their constituents, consult outside medical advisors etc and prepare their submissions.

As you see, the final public review ends in February 2012.

In May 2012, ICD-11 Revision is scheduled to launch its Beta drafting platform for ongoing public review and limited interaction, so unless the APA decides to give itself yet another year, these two classification systems, which have given a commitment to "harmonization" "as far as possible", are slipping further and further out of synch.


Back in 2007, both systems were timelined to publish by 2012. By 2007/8, the WHO shifted their Timeline to 2014, and now we are looking at 2015. The APA gave themselves an additional 12 months and the next edition of DSM-5 is now expected in May 2013 - if they are ready.

Suzy