Comments on DSM-5 proposals from the Massachusetts CFIDS/ME and FM Association

April 17, 2010 by

Comments on DSM-5 proposals from the Massachusetts CFIDS/ME and FM Association

Post #34 Shortlink: http://wp.me/pKrrB-Ft

Submissions

Patient organisations, professionals and advocates submitting comments in the DSM-5 draft proposal review process are invited to provide copies of their submissions for collation on this page: http://wp.me/PKrrB-AQ

Massachusetts Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalopathy and Fibromyalgia Association (Mass. CFIDS/ME & FM)

http://www.masscfids.org/

LETTER TO THE DSM-5 COMMITTEE OF THE APA

The Board of Directors of the Massachusetts Chronic Fatigue and Immune Dysfunction Syndrome / Myalgic Encephalopathy and Fibromyalgia Association (Mass. CFIDS/ME &FM) has reviewed your proposed revisions of DSM-IV destined for DSM-5. Our special focus has been on your newly proposed category “Complex Somatic Symptom Disorder”. Our concern is not so much about the fact that you want to simplify terms for somatoform disorders but about the particular criteria cited and the potential misuse of the category.

We share the concern, heard from individuals and organizations around the world, that this new category might be too readily misused to include chronic fatigue syndrome (“CFS”, also now known as ME or myalgic encephalopathy) and fibromyalgia as if they are forms of a psychological disorder. Most simply, they are not now psychologically caused illnesses nor have they ever been so. This concern doesn’t come out of the blue. Here in Massachusetts it is based on two and a half decades of seeing mistaken and harmful misdiagnoses based on totally inappropriate and harmful misconceptions of what CFS and fibromyalgia are and what they are caused by.

Our organization, celebrating our 25th year of existence helping patients with these illnesses, has seen firsthand the terrible toll exacted by the trail of misdiagnoses. Patients are tainted, dismissed, not properly treated, and often referred to equally misinformed mental health clinicians who then compound the damage.

In our view, the key problem is not so much the diagnostic nomenclature as it is the wrong and hugely out-of-date conceptions on the part of psychiatrists and non-psychiatric physicians of the very nature and likely causes of both CFS/ME and FM. While it is true that there may be important psychological disturbances following onset, these are secondary.

Over the past fifteen years, increasing numbers of researchers from around the world have pinpointed the likely biological causes, the complex pathophysiology that follows from the initial infectious or toxic triggers, and the interacting and dysfunctional multiple body systems (immune, central and peripheral nervous systems, endocrine, cellular [mitochondrial], etc) involved. Genetic and genomic factors are being elucidated. Certain viruses have long been implicated. Most recently a retrovirus, XMRV, has been implicated and is actively being studied in several centers. While no widely accepted biomarkers are currently available, many key researchers believe that it will not be long before one or more biomarkers will be found. (For example there are many changes in components of immune system functioning.)

While there is no definitive cure as yet, forms of treatment have been developed over the years that can alleviate many of the symptoms. Here is where mental health clinicians can help; sleep disorders are common, and if there are serious secondary psychological symptoms, certain therapies can help.

Dr. Anthony Komaroff, Professor of Medicine at Harvard Medical School and a long-time researcher in the field has said the following: “there are now over 4,000 published studies that show underlying biomedical abnormalities in patients with this illness. It’s not an illness that people can simply imagine that they have and it’s not a psychological illness. In my view, that debate, which has waged for twenty years, should now be over”. [1] Four years later there is even more evidence for Dr. Komaroff’s assertion.

The bottom line is that CFS and fibromyalgia are not psychological illnesses. It is then essential that the American Psychiatric Association vigorously help educate graduate and resident psychiatrists on what is now known. While the wording and criteria for “Complex Somatic Symptom Disorder” will matter so as to avoid confusing chronic fatigue syndrome and fibromyalgia with a somatoform disorder, it will be new understanding of the biological nature, proper diagnostic techniques, and appropriate treatments of these illnesses that will matter most. We consider these re-education efforts to be a responsibility of the American Psychiatric Association along with researchers and clinicians expert in the fields of chronic fatigue syndrome and fibromyalgia.

Alan Gurwitt, M.D.
President, Massachusetts CFIDS/ME & FM Association
(Retired adult and child psychiatrist, Distinguished Fellow of the American Psychiatric Association) 4/16/10

[1] Professor Anthony Komaroff, Harvard Medical School: Speaking at the USA Government CDC press conference on November 3, 2006

Filed under American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-5 in the media, DSM-V, Functional Somatic Syndrome (FSS), Somatic Symptom Disorder, Somatoform Disorders

Letter to the APA on Complex Somatic Symptom Disorder (CSSD) by Mary Schweitzer

April 13, 2010 by

Letter to the APA on Complex Somatic Symptom Disorder (CSSD) by Mary Schweitzer

Post #33 Shortlink: http://wp.me/p5foE-2RD

Mary Schweitzer

13 April 2010

There are only a few days left to comment on the proposed new category of Complex Somatic Symptom Disorder (CSSD) for the APA’s new DSM-5. To read about the proposed new classification, go to the following website:

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

Instructions for comments are on the bottom of the page. You have to register, but that’s not difficult.

We have only until April 20 to leave a comment.

Many organizations connected to ME and CFS advocacy have sent testimony – all should. This could be very dangerous. To begin with, psychiatric treatment is not going to help the biomedical foundation of the disease, so the misdiagnosis would lead to maltreatment. But there are other concerns as well. If “CFS” was promoted as the psychological illness CSSD, patients would be subject to the restrictions insurance companies place on mental disorders. Most health insurance plans do not cover more than a few doctor’s visits per year for a mental illness, if they cover any at all; most disability insurance plans only cover mental illnesses for 3-5 years, if they cover them at all. This is, of course, a great injustice to those with mental illnesses. But that injustice would not be improved by adding patients with “CSSD” to the mix.

My own comments can be found here:

http://slightlyalive.blogspot.com/2010/04/my-letter-to-apa-on-cssd.html

Mary Schweitzer

Filed under American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-V, Functional Somatic Syndrome (FSS), MUS, Somatic Symptom Disorder, Somatoform Disorders

Psychology Today: Allen Frances MD on DSM-5 and comment

April 13, 2010 by

Psychology Today: Allen Frances MD on DSM-5 draft proposals and comment

Post #32 Shortlink: http://wp.me/pKrrB-Fj

Over the past 12 months, Allen Francis, MD, has published a series of often controversial commentaries on the DSM revision process in the media, via Psychiatric Times website and yesterday, on the site of Psychology Today.

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

I have had a comment published, this morning, in response to his latest piece on Psychology Today.

Blogs
DSM5 in Distress
The DSM’s impact on mental health practice and research.
by Allen Frances, MD

DSM5: An Open Process Or Bust
The next steps need help from the field and public.
Published on April 12, 2010

“The first drafts of DSM5 were posted two months ago, allowing the field and the public a first glimpse into what had previously been an inexplicably secretive process. Today is the last day for public comment on these drafts…”

Read full text here

Comments

Public review process

Submitted by Suzy Chapman on April 13, 2010 – 3:24am.

I would like to thank Dr Frances for his commentaries around the DSM revision process. I hope he won’t mind my highlighting that draft proposals are out for review until Tuesday, 20 April – so there is another week during which health professionals, researchers, patient organisations and the lay public can input into the review process.

For some time now, professionals in the field, interest groups and the media have voiced concerns that the broadening of criteria for some DSM-5 categories would bring many more patients under a mental health diagnosis.

But if the draft proposals of the “Somatic Symptom Disorders” Work Group were to be approved there will be medical, social and economic implications to the detriment of all patient populations and especially those bundled by many within the field of liaison psychiatry and psychosomatics under the so-called “Functional Somatic Syndromes” (FSS) and “Medically Unexplained Syndromes” (MUS) umbrellas, under which they include Chronic fatigue syndrome, ME, Fibromyalgia, IBS, chemical injury, chemical sensitivity, chronic Lyme disease, GWS and others [1].

There is considerable concern amongst international patient organisations for the implications of the “Somatic Symptom Disorders” Work Group proposal for combining Somatoform Disorders, Psychological Factors Affecting Medical Condition (PFAMC), and Factitious Disorders under a common rubric called “Somatic Symptom Disorders” and for the creation of a new classification, “Complex Somatic Symptom Disorder” (CSSD).

They are particularly concerned for patients living with conditions characterised by so-called “medically unexplained symptoms” or with medical conditions for which diagnostic tests are currently lacking that provide evidence substantiating the medical seriousness of their symptoms and the need for provision of appropriate medical investigations, treatments, financial and social support, and in the case of children and young people, the putting in place of arrangements for the education of children too sick to attend mainstream school.

According to “Somatic Symptom Disorders” Work Group proposals:

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

A. Somatic symptoms:

Multiple somatic symptoms that are distressing, or one severe symptom

B. Misattributions, excessive concern or preoccupation with symptoms and illness: At least two of the following are required to meet this criterion:

(1) High level of health-related anxiety.

(2) Normal bodily symptoms are viewed as threatening and harmful

(3) A tendency to assume the worst about their health (catastrophizing).

(4) Belief in the medical seriousness of their symptoms despite evidence to
the contrary.

(5) Health concerns assume a central role in their lives

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

The CFIDS Association of America has submitted: “As drafted, the criteria for CSSD establish a “Catch 22” paradox in which six months or more of a single or multiple somatic symptoms – surely a distressing situation for a previously active individual – is classified as a mental disorder if the individual becomes “excessively” concerned about his or her health. Without establishing what “normal” behavior in response to the sustained loss of physical health and function would be and in the absence of an objective measure of what would constitute excessiveness, the creation of this category poses almost certain risk to patients without providing any offsetting improvement in diagnostic clarity or targeted treatment.” [2]

To date, there has been little public discussion by professionals or the media of the medical, social and economic implications for patients of the application of an additional diagnosis of “Complex Somatic Symptom Disorder”.

With a week to go before this initial public review period closes there is still time and I urge professionals and stakeholders to scrutinise the proposals of the “Somatic Symptom Disorder” Work Group and to submit their concerns to the Task Force.

Suzy Chapman, UK patient advocate

[1] Marin H, Escobar JI: Unexplained Physical Symptoms What’s a Psychiatrist to Do? Psychiatric Times. Aug 2008, Vol. 25 No. 9 http://www.psychiatrictimes.com/display/article/10168/1171223

[2] CFIDS Association of America submission to DSM-5 public review:
http://www.cfids.org/advocacy/2010/dsm5-statement.pdf

—————————

Related material:

PULSE Today

Managing medically unexplained symptoms, 07 Apr 10

—————————

The DSM-5 public review period runs from 10 February to 20 April. Members of the public, patient representation organisations, professionals and other end users can submit responses, online.

Please take this opportunity to register comment and to alert and encourage professionals and international patient organisations to participate.

Proposed Draft Revisions to DSM Disorders and Criteria are published here on the APA’s relaunched DSM5.org website: http://www.dsm5.org/Pages/Default.aspx

Somatoform Disorders:
http://www.dsm5.org/ProposedRevisions/Pages/SomatoformDisorders.aspx

Proposed new DSM-5 category: Complex Somatic Symptom Disorder
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368

Two Key PDF documents are associated with proposals:

      PDF Somatic Symptom Disorders Introduction DRAFT 1/29/10

      PDF Justification of Criteria – Somatic Symptoms DRAFT 1/29/10

The Alpha Draft for ICD-11 is scheduled for May 2010. I shall be posting again shortly around the ICD-11 revision process.

Filed under American Psychiatric Association (APA), CFIDS Association, Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-5 in the media, DSM-V, Functional Somatic Syndrome (FSS), ICD revision process, Javier Escobar, Somatic Symptom Disorder

CFIDS Association of America: Submission for DSM-5 public review process

April 9, 2010 by

CFIDS Association of America: Submission for DSM-5 public review process

Post #31 Shortlink: http://wp.me/pKrrB-EP

Submissions

Patient organisations, professionals and advocates submitting comments in the DSM-5 draft proposal review process are invited to provide copies of their submissions for collation on this page: http://wp.me/PKrrB-AQ

The CFIDS Association of America

Working to make CFS widely understood, diagnosable, curable and preventable

The Diagnostic and Statistical Manual for Mental Disorders (DSM) is being revised by the American Psychiatric Association for release in 2013. Creation of a new category called “Complex Somatic Symptom Disorder” has generated concern and the CFIDS Association submitted its statement on April 1.

The APA will accept public comments until April 20 2010, at: http://www.dsm5.org/Pages/Default.aspx

Open PDF here on the CFIDS site or here on Dx Revision Watch: CFIDS DSM-5 Statement

The CFIDS Association of America

The CFIDS Association of America

April 1, 2010

DSM-5 Task Force

American Psychiatric Association
1000 Wilson Boulevard
Suite 1825
Arlington, VA 22209

Members of the DSM-5 Task Force,

In response to an open request for input on proposed changes to the fifth revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM), the CFIDS Association of America submits the following statement and urgent recommendation.

The CFIDS Association strongly questions the utility of the proposed rubric of complex somatic symptom disorder (CSSD). According to the DSM-5 website

(http://www.dsm5.org/Documents/Somatic/APA%20Somatic%20Symptom%20Disorders%20description%20January29%202010.pdf, accessed March 28, 2010):

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

A. Somatic symptoms:

Multiple somatic symptoms that are distressing, or one severe symptom

B. Misattributions, excessive concern or preoccupation with symptoms and illness: At least two of the following are required to meet this criterion:

(1) High level of health-related anxiety.

(2) Normal bodily symptoms are viewed as threatening and harmful

(3) A tendency to assume the worst about their health (catastrophizing).

(4) Belief in the medical seriousness of their symptoms despite evidence to the contrary.

(5) Health concerns assume a central role in their lives

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

The creation of CSSD appears to violate the charges to DSM-5 Work Groups to clarify boundaries between mental disorders, other disorders and normal psychological functioning

(http://www.dsm5.org/about/Pages/faq.aspx, accessed March 28, 2010). This is especially true with regard to patients coping with conditions characterized by unexplained medical symptoms, or individuals with medical conditions that presently lack a mature clinical testing regimen that provides the evidence required to substantiate the medical seriousness of their symptoms. For instance, all of the case definitions for CFS published since 1988 have required that in order to be classified/diagnosed as CFS, symptoms must produce substantial impact on the patient’s ability to engage in previous levels of occupational, educational, personal, social or leisure activity. Yet, all of the case definitions rely on patient report as evidence of the disabling nature of symptoms, rather than results of specific medical tests. So by definition, CFS patients will meet the CSSD criteria A and C for somatic symptoms and chronicity, and by virtue of the lack of widely available objective clinical tests sensitive and specific to its characteristic symptoms, CFS patients may also meet criterion B-4.

As drafted, the criteria for CSSD establish a “Catch-22” paradox in which six months or more of a single or multiple somatic symptoms – surely a distressing situation for a previously active individual – is classified as a mental disorder if the individual becomes “excessively” concerned about his or her health. Without establishing what “normal” behavior in response to the sustained loss of physical health and function would be and in the absence of an objective measure of what would constitute excessiveness, the creation of this category poses almost certain risk to patients without providing any offsetting improvement in diagnostic clarity or targeted treatment.

To provide another common example, back pain that is debilitating and severe, with negative MRIs, is still debilitating and severe back pain. A patient in this situation might be concerned about this back pain, might view it as detrimental to his quality of life and livelihood, and might direct time and resources to seeking care from multiple specialists (e.g., neurology, rheumatology, orthopedics, rehabilitation) to relieve it. Each of these specialists is likely to recommend slightly different therapies, compounding the patient’s focus on alternative explanations for and long-term impact of decreased function and diminished health. Such a patient could be diagnosed with CSSD, yet no empiric evidence has been provided by the Somatic Symptoms Disorders Work Group that applying the label of CSSD will facilitate communication with the patient, add clinical value to the patient’s experience, or improve the care any of these various specialists might provide.

The Somatic Symptoms Disorder Work Group states that patients fitting these criteria are generally encountered in general medical settings, rather than mental health settings

(http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368, accessed March 28, 2010), further limiting the usefulness of this classification in a manual written primarily for the benefit of mental health professionals.

The Somatic Symptoms Disorders Work Group conveys considerable uncertainty about the impact of this new label, in spite of the charge to all DSM-5 work groups to demonstrate the strength of research for the recommendations on as many evidence levels as possible. The Somatic Symptoms Disorders Work Group states:

“It is unclear how these changes would affect the base rate of disorders now recognized as somatoform disorders. One might conclude that the rate of diagnosis of CSSD would fall, particularly if some disorders previously diagnosed as somatoform were now diagnosed elsewhere (such as adjustment disorder). On the other hand, there are also considerable data to suggest that physicians actively avoid using the older diagnoses because they find them confusing or pejorative. So, with the CSSD classification, there may be an increase in diagnosis.”

(http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368, accessed March 28, 2010)

The proposed DSM-5 revision correctly does not identify chronic fatigue syndrome (CFS) as a condition within the domain of mental disorders and the DSM. However, past discussions of the Somatic Symptoms Disorder Work Group have included such physiological disorders as chronic fatigue syndrome, irritable bowel syndrome and fibromyalgia

(http://www.dsm5.org/Research/Pages/SomaticPresentationsofMentalDisorders%28September6-8,2006%29.aspx)

as “somatic presentations of mental disorders.” None of the research and/or clinical criteria for chronic fatigue syndrome published since 1988 have established CFS as a mental disorder and a continuously growing body of literature demonstrates CFS to be a physiological disorder marked by abnormalities in the central and autonomic nervous systems, the immune system and the endocrine system. The role of infectious agents in the onset and/or persistence of CFS has received renewed attention since the DSM-5 revision process began in 1999. Most recently, the October 2009 report of evidence of a human retrovirus, xenotropic murine leukemia-related retrovirus (XMRV), in CFS patients in Science (Lombardi, 2009) has generated new investigations into this and other infectious agents in CFS.

The conceptual framework for CFS detailed in the “Clinical Working Case Definition, Diagnostic and Treatment Protocols” (Carruthers, 2003) serves as a useful tool for professionals to establish a diagnosis of CFS, address comorbidities that may complicate the clinical presentation and distinguish CFS from conditions with overlapping symptomotology. Research on CFS continues to explore and document important biomarkers. Lack of known causation does not make CFS – or the CFS patient’s illness experience – psychopathological any more than multiple sclerosis, diabetes, or other chronic illnesses with objective diagnostic measures, would be so considered.

For the reasons stated above and the general failure of the proposed creation of the CSSD to satisfy the stated objectives of the DSM-5 without risking increased harm to patients through confusion with other conditions or attaching further stigma, the CFIDS Association strongly urges the DSM-5 Task Force to abandon the proposed creation of CSSD.

Sincerely,

K. Kimberly McCleary

President & CEO

The CFIDS Association of America

Filed under American Psychiatric Association (APA), CFIDS Association, Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-V, Functional Somatic Syndrome (FSS), MUS, Somatic Symptom Disorder, Somatoform Disorders

Vermont CFIDS Association: Submission for DSM-5 public review process

April 9, 2010 by

Vermont CFIDS Association: Submission for DSM-5 public review process

Post #30 Shortlink: http://wp.me/pKrrB-EI

Submissions

Patient organisations, professionals and advocates submitting comments in the DSM-5 draft proposal review process are invited to provide copies of their submissions for collation on this page: http://wp.me/PKrrB-AQ

Vermont CFIDS Association

First Do No Harm

[…]

The following partial pre-release draft letter speaks eloquently for this issue, and can be shared, adapted, and/or sent to the DSM-5 Website.

Rik Carlson

(We) are deeply concerned by the American Psychiatric Association’s possible reclassification of CFS as a somatoform disorder in DSM-5.

Researchers at both the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) have documented the physiological and pathophysiological underpinnings of this illness. The CDC, under the leadership of Julie Gerberding, launched a multi-million-dollar campaign within the past few years to underscore that CFS is a multi-system disorder which can and should be treated as such.

Based upon the numerous, peer-reviewed studies that have linked CFS to infection and multiple organ systems abnormalities, classifying CFS as a Complex Somatic Symptom Disorder seems unreasonable and unwarranted.

As estimated and communicated to you by the IACFS/ME: Over the past 25 years, 2,000 peer-reviewed CFS studies have been published. The data support a multifactorial condition characterized by disturbances in HPA function, upregulated antiviral pathways in the immune system, and genetic abnormalities. Unlike clinical anxiety and depression, psychotropics are generally ineffective for CFS and standard medical advice to exercise and rest or resume activities often lead to symptom worsening. In contrast to clinical depression, motivation is much less affected in CFS and the desire to be active remains intact.

In the past, the absence of a documentable, medical explanation has relegated other illnesses to a psychiatric diagnosis. Illnesses given psychiatric diagnoses out of ignorance are later given more accurate, medical diagnoses with additional scientific research. Surely, you do not wish to demean the field of psychiatry by repeating the errors of psychiatry’s past.

We are further concerned that the reclassification of CFS as a somatoform disorder in the DSM-5 will result in decreased care of CFS patients. The CDC’s Chronic Fatigue Syndrome educational programs for physicians explicitly suggest the management of CFS by primary care physicians with the suggestion of a psychiatric consult if the patient manifests appropriate symptoms. The reclassification of CFS as a somatoform disorder in the DSM-5 will create confusion for many practitioners. The confusion thereby created will demean the illness, and the willingness of some practitioners to treat it. Moreover, the listing of CFS as a somatoform disorder may impact the ability of CFS patients to receive reimbursement of their treatment costs resulting in a loss of treatment and benefits.

Filed under American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-V, Functional Somatic Syndrome (FSS), MUS, Somatic Symptom Disorder, Somatoform Disorders

US, UK and international patient organisation submissions to DSM-5 draft proposals

March 26, 2010 by

US, UK and international patient organisation submissions to DSM-5 draft proposals

Post #29 Shortlink: http://wp.me/pKrrB-Ex

The DSM-5 public review period closes on 20 April – that’s less than four weeks away.

Patient representation organisations, clinicians, researchers, allied health professionals, patient advocates and other stakeholders can register online at www.dsm5.org to submit responses.

US patient organisation submissions:

CFSIDS: The March issue of CFIDSLink-e-News reports that the CFIDS Association of America is seeking input from outside experts into the DSM-5 public review process. Their notice can be read here:
http://www.cfids.org/archives/2006-2010-cfidslink/march-2010.asp#advocacy

WPI: The Whittemore Peterson Institute has announced on its Facebook site that it intends to submit a response:
http://www.facebook.com/pages/Whittemore-Peterson-Institute/154801179671

International patient organisation submissions:

IACFSME: The IACFSME has issued an alert for international CFS and ME clinicians, researchers and professionals and has published a copy of the organisation’s own submission in the DSM-5 public review process. Their notice and submission can be read here: http://www.iacfsme.org/Home/tabid/36/Default.aspx

ESME: ESME (International Society for ME) has stated on its Facebook site that its Think Tank panel members will submit a response which will be posted on ESME’s website and on ESME’s Facebook page:
http://www.facebook.com/pages/ESME-European-Society-for-ME/326113349124

If readers are aware of other US organisations, international organisations or professionals who have stated that they intend to submit responses, please let me know as I am collating these on my site.

UK patient organisation submissions:

On 4 March, I contacted senior personnel of seven national UK patient and research organisations. All were sent key links and documents relevant to the DSM-5 Somatic Symptom Disorders Work Group proposals. (These organisations had also been sent selected DSM revision related material during the course of the past twelve months so all will have been aware of the impending release of draft proposals for DSM-5.)

They were all asked if they would clarify whether they intended to submit a response to the DSM-5 draft proposals for revision of DSM-IV categories currently classified under “Somatoform Disorders” and if so, whether they intended to publish their submission.

Those organisations which had not responded by 22 March were contacted again. These are the replies so far to my enquiries:

The Young ME Sufferers Trust: No reply received.

AYME: No reply received.

Invest in ME: Invest in ME has confirmed that it does intend to submit a response and that it will be publishing its response.

ME Research UK: Neil Abbott has said that it is uncertain whether resources will run to producing a response, but if a response is put together on behalf of MERUK, then this would be made publicly available.

Action for M.E.: On 25 March, in a telephone conversation, Action for M.E.’s Policy Officer was unable to confirm what Action for M.E.’s intentions are. The Policy Officer was asked to follow this up with Sir Peter Spencer (CEO) and Heather Walker (Communications Manager) since neither had responded to my email enquiries.

Later in the day, Action for M.E. posted a holding statement from its CEO, Sir Peter Spencer, on its Facebook Wall ( http://www.facebook.com/actionforme ) stating that:

“Action for M.E. will respond to the American consultation exercise before the 20th April.

“We will publish our considered response on our website when it has been submitted to the DSM-5 Task force.

“Action for M.E ‘s position is that M.E./CFS is a long-term and disabling physical illness. We accept the WHO classification in ICD 10 G93.3 that M.E. is a neurological disorder.

“We will oppose any attempt to classify CFS/M.E. as a psychiatric disorder either explicitly or implicitly.”

25% ME Group: The 25% ME Group has published a 12 page “Submission re: DSM-V and ME/CFS”, compiled by Professor Malcolm Hooper and Margaret Williams for submission by The 25% ME Group, dated 20 March 2010:
http://www.25megroup.org/News/DSM-V%20submission.doc

The ME Association: Neil Riley, Chair of the ME Association Board of Trustees, provided me with the following information:

That a response had already been submitted to the DSM-5 on 11 February.
That the response was submitted not by the ME Association but by Dr Ellen Goudsmit, PhD.
That the ME Association endorses Dr Goudsmit’s submission.
That the ME Association “had not thought of publishing it and wanted to see what the final proposals for the revision of the DSM categories will be but [Mr Riley] can confirm that the main argument put forward was that CFS should be an exclusion.”

In response to a request for further clarification, Mr Riley wrote:

“As you are aware the DSM-5 draft proposals relate to proposed psychiatric categories and this is a specialised field for which professional advice was best sought. As you know CFS and ME are not in the current draft for DSM-5. A comment was submitted related to another disorder (CSSD) which may be considered by some clinicians as an additional diagnosis on the axis e.g. affecting outcome of CFS. This was not a response to the text on CFS but challenged the robustness of a proposed psychiatric disorder.”

“The current text in the draft ‘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 B-attributions, etc) is present.’ Without diagnostic tests to determine whether attributions are correct (cf criterion B), our recommendation is that to avoid confusion, CFS should be an exclusion.”

Mr Riley added:

“If a future draft mentions CFS, a formal response on behalf of the MEA is justified and will be published in full online.”

Other than the comments contained in Mr Riley’s responses to me earlier this month, the ME Association has been silent on the DSM-5 revision process and its position on the proposals of the Somatic Symptom Disorders Work Group and whether it had intended to submit a response, as an organisation, on behalf of its members.

Mr Riley’s response indicates that the ME Association does not plan to publish a copy of the response which it says it is endorsing, in order to fully inform its membership and the wider ME community of its position on the DSM-5 proposals.

If you find this unacceptable, please advise the Board of Trustees.

In June 2009, the ME Association published, on its website only, a “Summary Report” on the CISSD Project* which had been co-ordinated by Dr Richard Sykes, PhD. between 2003 and 2007. This report drew on the content of the December 2007 Final Report on the CISSD Project handed to the project’s Administrators, Action for M.E. on completion of the project.

The ME Association has published no comment or opinion on the aims and objectives of the project, itself, the membership of its workgroup, the content and recommendations contained in the Review paper published by the project’s leads, Kroenke, Sharpe and Sykes in mid 2007, or on the “Summary Report” provided to it by Dr Sykes, either at the time that it placed this document on its website, last June, nor since.

The project’s UK chair was Professor Michael Sharpe.

I will update when I have heard from the remaining two organisations.

If readers are aware of other UK organisations and professionals who are intending to make a submission, please let me know.

 

Related material:

The DSM-5 proposal is that Somatoform Disorders, Psychological Factors Affecting Medical Condition (PFAMC) and Factitious Disorders should be combined under a common rubric entitled “Somatic Symptom Disorders” and for a new disorder – “Complex Somatic Symptom Disorder (CSSD)”.

The DSM-5 public review period runs from 10 February to 20 April. Members of the public, patient representation organisations, professionals and other end users can submit responses, online.

Please take this opportunity to comment and to alert and encourage professionals and international patient organisations to participate.

Proposed Draft Revisions to DSM Disorders and Criteria are published here on the APA’s relaunched DSM5.org website: http://www.dsm5.org/Pages/Default.aspx

Somatoform Disorders:
http://www.dsm5.org/ProposedRevisions/Pages/SomatoformDisorders.aspx

Proposed new DSM-5 category: Complex Somatic Symptom Disorder:
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368

Two Key PDF documents are associated with proposals:

PDF A] Somatic Symptom Disorders Introduction DRAFT 1/29/10
http://www.dsm5.org/Documents/Somatic/APA%20Somatic%20Symptom%20Disorders%20description%20January29%202010.pdf

PDF B] Justification of Criteria – Somatic Symptoms DRAFT 1/29/10
http://www.dsm5.org/Documents/Somatic/APA%20DSM%20Validity%20Propositions%201-29-2010.pdf

*Review paper: CISSD Project leads Kroenke K, Sharpe M, Sykes R: Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations. Psychosomatics 2007 Jul Aug;48(4):277-85. FREE Full Text: http://psy.psychiatryonline.org/cgi/content/full/48/4/277

18 Proposals submitted by Dr Richard Sykes to WHO ICD Update and Revision Platform, Topical Advisory Group – Mental Health (TAGMH): https://extranet.who.int/icdrevision/GroupPage.aspx?gcode=104

The paper: Kroenke K: Somatoform disorders and recent diagnostic controversies. Psychiatr Clin North Am 2007 Dec;30(4):593-619: http://www.ncbi.nlm.nih.gov/pubmed/17938036  contains the caveat:

“Although the CISSD is an ad hoc group that includes many international experts on somatoform disorders, it was neither appointed nor sanctioned by the APA or WHO, the organizations authorized to approve revisions of DSM and ICD, respectively. As such, the CISSD recommendations should be considered advisory rather than official. Also, there were some suggestions for which the CISSD achieved near consensus but other issues where opinions diverged considerably.”

——————

Note: An unpublished paper refered to on the DSM-5 site at this URL under “Rationale”

Complex Somatic Symptom Disorder [Rationale Tab]
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368

“A key issue is whether the guidelines for CSSD describe a valid construct and can be used reliably. A recent systematic review (Lowe, submitted for publication) shows that of all diagnostic proposals, only Somatic Symptom Disorder reflects all dimensions of current biopsychosocial models of somatization (construct validity) and goes beyond somatic symptom counts by including psychological and behavioral symptoms that are specific to somatization (descriptive validity). Predictive validity of most of the diagnostic proposals has not yet been investigated.”

is thought to be this paper currently “In Press” on the Journal of Psychosomatic Research, for which DSM-5 SDD Work Group member, Frances Creed, is a co-editor. Access to full paper requires subscription or pay per paper:

Articles in Press
http://www.jpsychores.com/inpress

Towards positive diagnostic criteria: A systematic review of somatoform disorder diagnoses and suggestions for future classification
In Press Corrected Proof , Available online 15 March 2010
Katharina Voigt, Annabel Nagel, Björn Meyer, Gernot Langs, Christoph Braukhaus, Bernd Löwe
Journal of Psychosomatic Research
DOI: 10.1016/j.jpsychores.2010.01.015
Abstract | Full Text | Full-Text PDF (183 KB)

Abstract
http://www.jpsychores.com/article/S0022-3999(10)00020-6/abstract

Towards positive diagnostic criteria: A systematic review of somatoform disorder diagnoses and suggestions for future classification

Katharina Voigta 1, Annabel Nagel a1, Björn Meyer a, Gernot Langs b, Christoph Braukhaus b, Bernd Löwe a
Received 1 November 2009; received in revised form 12 January 2010; accepted 14 January 2010. published online 15 March 2010. Corrected Proof

Abstract

Objectives
The classification of somatoform disorders is currently being revised in order to improve its validity for the DSM-V and ICD-11. In this article, we compare the validity and clinical utility of current and several new diagnostic proposals of those somatoform disorders that focus on medically unexplained somatic symptoms.

Methods
We searched the Medline, PsycInfo, and Cochrane databases, as well as relevant reference lists. We included review papers and original articles on the subject of somatoform classification in general, subtypes of validity of the diagnoses, or single diagnostic criteria.

Results
Of all diagnostic proposals, only complex somatic symptom disorder and the Conceptual Issues in Somatoform and Similar Disorders (CISSD) example criteria reflect all dimensions of current biopsychosocial models of somatization (construct validity) and go beyond somatic symptom counts by including psychological and behavioral symptoms that are specific to somatization (descriptive validity). Predictive validity of most of the diagnostic proposals has not yet been investigated. However, the number of somatic symptoms has been found to be a strong predictor of disability. Some evidence indicates that psychological symptoms can predict disease course and treatment outcome (e.g., therapeutic modification of catastrophizing is associated with positive outcome). Lengthy symptom lists, the requirement of lifetime symptom report (as in abridged somatization), complicated symptom patterns (as in current somatization disorder), and imprecise definitions of diagnostic procedures (e.g., missing symptom threshold in complex somatic symptom disorder) reduce clinical utility.

Conclusion
Results from the reviewed studies suggest that, of all current and new diagnostic suggestions, complex somatic symptom disorder and the CISSD definition appear to have advantages regarding validity and clinical utility. The integration of psychological and behavioral criteria could enhance construct and descriptive validity, and confers prospectively relevant treatment implications. The incorporation of a dimensional approach that reflects both somatic and psychological symptom severity also has the potential to improve predictive validity and clinical utility.

Keywords: Classification, Diagnosis, Diagnostic and Statistical Manual of Mental Disorders, International Classification of Diseases, Somatoform disorders, Validation studies as topic

a Department of Psychosomatic Medicine and Psychotherapy, University Medical Center Hamburg-Eppendorf and Schön Klinik Hamburg-Eilbek, Hamburg, Germany
b Medical and Psychosomatic Hospital Bad Bramstedt, Bad Bramstedt, Germany
Corresponding author. Department of Psychosomatic Medicine and Psychotherapy, University Medical Center Hamburg-Eppendorf, Martinistr. 52, 20246 Hamburg, Germany. Tel.: +49 40 7410 59733; fax: +49 40 7410 54975.
1 Both authors contributed equally to this paper.
PII: S0022-3999(10)00020-6
doi:10.1016/j.jpsychores.2010.01.015

Compiled by Suzy Chapman

Filed under American Psychiatric Association (APA), CISSD Project, Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-V, Functional Somatic Syndrome (FSS), MUS, Somatic Symptom Disorder, Somatoform Disorders

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