European ME Alliance (EMEA) submission to DSM-5 draft proposals Submission

June 13, 2011 by

European ME Alliance (EMEA) submission to DSM-5 draft proposals Submission – to the American Psychiatric Association on DSM-V Complex Somatic Symptom Disorders category

Post #91 Shortlink: http://wp.me/pKrrB-1bI

June 2011

http://www.euro-me.org/news-Q22011-003.htm

The European ME Alliance consists of 11 European national charities/non profit organisations campaigning for better diagnosis and understanding of myalgic encephalomyelitis (ME or ME/CFS) as defined by WHO-ICD-10-G93.3.

Even though we are not mental health professionals or represent people with mental health disorders we feel it important to comment on the draft proposal of DSM-V and its Complex Somatic Symptom Disorders proposal.

This response should be seen against the backdrop of the devastation caused by the misinformation within the medical profession regarding ME/CFS and the promotion of false perceptions about the disease to the public, healthcare authorities and government.

It is of paramount importance that the American Psychiatric Association are aware of the dangers inherent in establishing incorrect categories of disorders which are based on poor science, vested interests or which do not serve the patients. It is the patients who must surely be the priority in all healthcare provision.

We are especially concerned about the criteria described in the new category of Complex Somatic Symptom Disorder which seems to imply that anyone who has a chronic or incurable illness with somatic symptoms and ‘misattributes’ their symptoms could be given this label.

Who decides when someone misattributes their pain or fatigue?

How are these symptoms measured?

How long and vigorously is a patient allowed to complain about their symptoms before a doctor can decide to investigate further and determine if a headache is a brain tumour or irritable bowel syndrome colon cancer?

In the CSSD Criteria B there are terms used which are subjective and not measurable – such as “health concerns” and “catastrophising”.

Based on our collective experiences with the treatment of an organic illness such as ME/CFS – experiences across Europe – our concern is that there is a great danger of mis- or missed diagnoses when looking at this category and its proposed diagnostic criteria.

The criteria are very vague and allow too much subjectivity.

In fact, ME/CFS could mistakenly be placed in this category if one were to ignore, or be unaware of, the huge volume of biomedical research and evidence which shows it to be an organic illness and if one were to use only the broad CSSD criteria to diagnose.

Such an action would be a major and costly mistake and would not serve the patients or the healthcare communities.

In our experience specialist ME/CFS clinics get as many as 40% of patients referred with a ME/CFS diagnosis who turn out to have other very serious and sometimes fatal illnesses.

The patients we are concerned with suffer from myalgic encephalomyelitis which is a neurological disease. Yet all too often these patients are being treated as if they had a somatoform illness.

Parents of children with ME/CFS are restricted in visiting their severely ill children in hospital or worse still the children are taken away from their families as the healthcare professional believes it is the family that is keeping the child ill by having ‘wrong illness beliefs’.

Severely ill grown ups with this disease are denied normal medical care and threatened with being placed in mental hospitals if they are too ill to care for themselves and ask for help.

This not only sets patient against healthcare professional but also is a waste of resources and of lives.

A broad unspecific category such as the proposed Complex Somatic Symptom Disorder does not help patients who need an honest and clear diagnosis.

Any illness lacking a diagnostic test is in danger of being put into this non specific category which helps no one.

We hope and request that the APA listens to patients and avoids creating a category of mental illness that is meaningless.

Yours Sincerely,

The Chairman, Board and Members of the European ME Alliance

www.euro-me.org

PDF version: http://www.euro-me.org/GB/EMEA%20Letter%20to%20APA%20-%20DSM-V.pdf

Membership of EMEA: http://www.euro-me.org/about.htm

Links:

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

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

For examples of submissions for 2010, go here: http://wp.me/PKrrB-AQ

Copies of submissions for 2011 are being collated, here: http://wp.me/PKrrB-19a   

If you are a patient organization, professional, patient, carer or advocate and have already submitted and would like a copy of your comment added to my site, please send a copy to me.agenda@virgin.net

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), MUS, Somatic Symptom Disorder, Somatoform Disorders

Final push: We have till Wednesday to submit comments on the DSM-5 draft criteria

June 13, 2011 by

Final push: We have till Wednesday to submit comments on the DSM-5 draft criteria

Post #90 Shortlink: http://wp.me/pKrrB-1bm

“So basically, they’re dumping some little-used, contentious and unpopular categories in a big bucket and stirring them up. The resulting mud could well end up sticking to us!”

If you only do two things online this week make it these:

1] Register to submit feedback via the DSM-5 Development website, here, and submit a letter of concern – however brief: http://tinyurl.com/Somatic-Symptom-Disorders

2] If you know an informed and sympathetic clinician, psychologist, allied health professional, lawyer, educator or social worker, contact them today and urge them to review these criteria and to submit a response as a concerned professional, or ask your state ME/CFS organization to submit a response.

The closing date for comments in the second DSM-5 public review is Wednesday, June 15

How many subscribers are there to the Co-Cure mailing list?

A couple of thousand?

And there are over 4,500 members of Phoenix Rising Forums. These usually very active forums are currently offline. Please use the time and energy you might have spent on Phoenix Rising to submit a comment.

We have the potential for several thousand more responses over the next three days.

OK, the APA issued no prior announcement of its intention to bring forward this second public review of draft criteria and so patient groups could not be alerted in advance. But alerts went out on May 5, the day after the latest criteria were posted on the DSM-5 Development site.

Nevertheless, many international patient organizations have been slow off the mark and some have been lukewarm about the need to submit, this year, or to submit, at all.

I’ve been banging on about the implications for these proposals for ME and CFS patients for two years, now, but where are the responses from our international patient organizations to these latest proposals?

Over two years ago, on May 13, 2009, I first reported on Co-Cure that the conceptual framework the DSM-5 Work Group for “Somatic Symptom Disorders” was proposing would:

“…allow a diagnosis of somatic symptom disorder in addition to a general medical condition, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome.” [1]

(“Somatic” means “bodily” or “of the body”.)

The most recent version of the Disorders description document states:

“This group of disorders is characterized predominantly by somatic symptoms or concerns that are associated with significant distress and/or dysfunction…Such symptoms may be initiated, exacerbated or maintained by combinations of biological, psychological and social factors.”

“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.”

“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.” [2]

 

Psychiatric creep

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 decides that the patient’s (or in the case of a child, a parent’s) response to their bodily symptoms and concerns about their health are “excessive”, or their perception of their level of disability “disproportionate”, or their coping styles “maladaptive.”

While the media has focussed on the implications for introducing new additions and broadening definitions of existing DSM diagnostic criteria, there has been no media scrutiny of these Work Group proposals nor recognition that this Work Group has been quietly redefining DSM’s “Somatoform Disorders” categories with proposals that will have the potential for a bolt-on diagnosis of a “somatic symptom disorder” for all medical diseases, whether “established general medical conditions or disorders”, like angina or diabetes, or conditions presenting with “somatic symptoms of unclear etiology.”

Yet these radical proposals for renaming the “Somatoform Disorders” category “Somatic Symptom Disorders” and combining a number of existing, little-used categories under a new umbrella term, “Complex Somatic Symptom Disorder (CSSD)”, and the more recently proposed “Simple Somatic Symptom Disorder (SSSD)”, have the potential for bringing thousands more patients under a mental health banner and expanding markets for psychiatric services, antidepressants 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” for all patients with somatic symptoms, irrespective of cause.

 

Sitting ducks

CFS, ME, Fibromyalgia and IBS patients are likely to get caught by these proposals.

CFS and ME patients already diagnosed or waiting for a diagnosis (which might take months or years) would be especially vulnerable to the highly subjective criteria and difficult to measure concepts like “disproportionate distress and disability”, “catastrophising”, “health-related anxiety” and “[appraising] bodily symptoms as unduly threatening, harmful, or troublesome”, this Work Group is proposing.

Other patient groups bundled under the so-called “Functional somatic syndromes” and “medically unexplained” umbrellas, like Chemical Injury (CI), Chemical Sensitivity (CS), chronic Lyme disease and Gulf War Illness, would also be highly vulnerable to a CSSD label.

These proposals could potentially result in misdiagnosis of a mental health disorder, misapplication of an additional diagnosis of a mental health disorder, misapplication of “rehabilitation” therapies like GET or iatrogenic disease.

Families would be at risk of wrongful accusation of “over-involvement” or “excessive” concern for a child’s symptomatology or of encouraging “sick role behaviour” in a child or young person.

Application of these vague and highly subjective criteria may have considerable implications for the diagnoses assigned to patients, for the provision of social care, payment of employment, medical and disability insurance and the length of time for which insurers are prepared to pay out.

The application of a diagnosis of CSSD may limit the types of treatment, medical investigations and testing that clinicians are prepared to consider and which insurers are prepared to fund.

 

International implications

This is not a US centric issue. The DSM is used to a varying extent in other countries in clinical settings. DSM criteria are currently used more often for research purposes than ICD-10 and the next edition will shape international research, influence literature in the fields of psychiatry and psychosomatics and inform perceptions of patients’ medical needs throughout the world.

Please make use of these last three days to tell the APA why the Somatic Symptom Disorders Work Group needs to rip up these proposals and start over again.

Links:

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

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

For examples of last year’s submissions, go here: http://wp.me/PKrrB-AQ

Copies of this year’s submissions are being collated here: http://wp.me/PKrrB-19a  

If you are a patient organization, professional, patient, carer or advocate and have already submitted and would like a copy of your comment added to my site, please send a copy to me.agenda@virgin.net

Submissions published to date for this second public review:

IACFS/ME (US);
ME Free For All.org (UK);
The Young ME Sufferers Trust (UK);
Coalition4ME/CFS (US);

Angela Kennedy, sociology lecturer (UK);
Dr John L Whiting MD, (Australia);

Kevin Short (UK)
Susanna Agardi (Australia)
Mary Barker (US);
Peter Kemp (UK);
Mary M. Schweitzer Ph.D., (US)

[1] “The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report” was published in the June 2009 issue of the Journal of Psychosomatic Research. The journal is co-edited by DSM-5 Work Group members, Prof Francis Creed and Dr James Levenson. Full free text: http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

[2] There are two key PDF documents: “Disorders Descriptions” and “Rationale”, which expand on the Work Group’s proposals:

              Disorders Description   Key Document One: “Somatic Symptom Disorders”

              Rationale Document     Key Document Two: “Justification of Criteria — Somatic Symptoms”

Suzy Chapman

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, Javier Escobar, Joel Dimsdale, MUS, Somatic Symptom Disorder, Somatoform Disorders

IACFS/ ME Statement on DSM-5 Somatic Symptom Disorder

June 11, 2011 by

The International Association for Chronic Fatigue Syndrome/ME (IACFS/ME) Statement on DSM-5 Somatic Symptom Disorder

Post #89 Shortlink: http://wp.me/pKrrB-1b6

The closing date for comments in the second DSM-5 public review is June 15.

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

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

Copies of last year’s submissions here: http://tinyurl.com/DSM5submissions

Copies of this year’s submissions here: http://tinyurl.com/DSM5submissions2011

IACFS/ME

Dear Members and Colleagues:

I have submitted the comments below to the DSM-5 Work Group on Somatic Symptom Disorders. We are very concerned about the proposed new diagnosis, Complex Somatic Symptom Disorder, and its potential influence on physicians who see patients with CFS/ME.

Thank you.

Fred

Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org

To the DSM-5 Somatic Symptoms Disorders Work Group:

On behalf of the board of directors and the membership of the International Association for Chronic Fatigue Syndrome (IACFS/ME), I would like to express my deep concern about the proposed new category of Complex Somatic Symptom Disorder (CSSD) in DSM-5 scheduled for release in 2013.

The Work Group’s well-reasoned points about DSM-IV somatoform disorders – that they are little used, confusing, and pejorative – do call for a re-evaluation. The question is: What should replace them? The new inclusive CSSD category attempts to offer a simplified and more inclusive diagnosis that may be more user-friendly to physicians and other health practitioners.

Our major concern is that the logic behind the new CSSD category is not informed by empirical data that directly examines the utility of this diagnosis in medical practice.

As stated by your Work Group: “A key issue is whether the guidelines for CSSD describe a valid construct and can be used reliably. …Predictive validity of most of the diagnostic proposals has not yet been investigated.”

Given the absence of scientific validation of the CSSD diagnosis, the potential for unintended consequences is a serious concern. One such consequence is the possibility of over-diagnosis that may selectively affect patients with illnesses that are already not well understood such as CFS/ME. If the treating practitioner is skeptical about the severity or even  existence of CFS/ME, then the new criteria can be used to diagnose CSSD without reference to an underlying illness.

For instance, the CSSD criteria of (2) Disproportionate and persistent concerns about the medical seriousness of one’s symptoms and (3) Excessive time and energy devoted to these symptoms or health concerns, would allow practitioners skeptical of CFS/ME to diagnosis the illness as an Axis I psychiatric disorder. This new psychological diagnosis may then narrow the physician’s focus and reduce the possibility of more effective management of the CFS/ME illness. Furthermore, the CSSD diagnosis may result in additional stigma for already marginalized patients with CFS/ME.

Over-diagnosis with CSSD may also arise from the broad generality of the new criteria and the absence of clear thresholds for patients to meet the criteria. As with somatization/somatoform disorders, when different criteria are used population prevalence varies from less than 1% for somatization disorder to an astonishing 79% for undifferentiated somatoform disorder (cited from Work Group online document). Arguably, the generality of the criteria for both undifferentiated somatoform disorder and CSSD suggests that CSSD may become a much more common (and potentially misapplied) diagnosis than the somatic symptom disorders that it replaces.

Finally, the CSSD diagnosis will not inform the clinician of CFS/ME-specific issues such as adverse reactions to treatment that are more likely in this hypersensitive population. By contrast, the CFS/ME diagnosis is useful for an array of illness related concerns that will assist the clinician in providing care for these medically under-served patients.

Given the above considerations, we ask that the CSSD diagnosis be omitted from DSM-5. Only when the proper validation studies are done that consider vulnerable populations such as CFS/ME can we know if the use of the CSSD diagnosis has clinical value. In its current form, we believe that the new diagnosis will do more harm than good.

Thank you.

Fred Friedberg

Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org

IACFS/ME
27 N. Wacker Drive, #416
Chicage, Illinois 60606
US

Filed under American Psychiatric Association (APA), DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-5 in the media, DSM-V, Functional Somatic Syndrome (FSS), Javier Escobar, Joel Dimsdale, MUS, Somatic Symptom Disorder, Somatoform Disorders

Coalition4ME/CFS issues Call to Action on DSM-5 proposals

June 9, 2011 by

Coalition4ME/CFS issues Call to Action on DSM-5 proposals

Post #88 Shortlink: http://wp.me/pKrrB-1aJ

On June 2, the Coalition4ME/CFS, which comprises eight US 305c registered patient organizations, issued a Call to Action for submissions to the DSM-5 Somatic Symptom Disorders Work Group.

Full Coalition4ME/CFS announcement: http://www.coalition4mecfs.org/News.html

Position paper (PDF): http://www.coalition4mecfs.org/DSM-5_Position_Paper_-_FInal2.pdf

Letter to the DSM-5 Task Force – Letter available for use to the public for submit to the task force: http://www.coalition4mecfs.org/DSM5letter.html

The Coalition4ME/CFS – a coalition of US ME/CFS non-profit organizations – has issued a Call to Action on the impending DSM-5 proposal and provided information to assist organizations and patients in writing their own letter to the American Psychiatric Association. The submission period ends June 15th.

THE COALITION ANNOUNCEMENT

DSM-5 Background:

Why this call to action is important to you:

Among other changes, the DSM-5 proposal includes the establishment of a new category called Complex Somatic Symptom Disorder (CSSD). The criteria for a CSSD diagnosis include somatic symptoms that last more than 6 months and significantly disrupt life combined with the doctor’s assessment that the patient has a disproportionate concern about the medical seriousness of his symptoms. The guidelines also include recommendations of Cognitive Behavior Therapy (CBT) and antidepressants as the appropriate therapies.

CSSD could prove disastrous for the ME/CFS patient and for patients with other diseases like Fibromyalgia, Gulf War Illness and IBS that are misunderstood, misdiagnosed and mistreated by the medical community at large. For doctors who view the ME/CFS patient as ‘just depressed’, it will be a small leap to decide that the patient has “disproportionate and persistent concerns about the medical seriousness of one’s symptoms” and, as a result, inappropriately diagnose CSSD. Once diagnosed with CSSD, the implications for diagnosis, treatment, disability and insurance will be profound.

The background and associated issues with the DSM-5 and CSSD can be found in the attached “Complex Somatic Symptom Disorders Position Paper” developed by the Coalition 4 ME/CFS.

What you can do:

The Coalition 4 ME/CFS has sent a response to the APA on this issue, which you can find here. (Feel free to use this letter as a template for your response). The DSM-5 team also needs to hear from as many of you as possible about your concerns. Feel free to draw from the Coalition 4 ME/CFS letter for your own comments. Remember, this must be done by June 15, 2011.

Here are the steps to follow to provide your input:

1. Register on the DSM-5 web site to make comments. The “Register Now” site is in the upper right hand corner of the DSM-5 home page. You will receive a confirmation email with a temporary password that you will have to click on to complete registration. If you have registered previously, you should still have an account and can log in in the same box.

2. Provide your comments directly on the CSSD page. It is probably easiest to create your comments outside of the interface and then copy them in. Bolding and other formatting appear to be lost when you copy your document in.

Thank you,

Coalition 4 ME/CFS

• Other Resources – Suzy Chapmans is an extensive resource for these issues; see Dx Revision Watch

• Check out other organizations letters in the comments below and on this page

The Coalition4ME/CFS consists of the

• CFS/Fibromyalgia Organization of Georgia, Inc.
• CFS Knowledge Center
• CFS Solutions of West Michigan
• PANDORA Inc. – Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.
• Phoenix Rising
• Rocky Mountain CFS/ME & FM Association (RMCFA)
• Vermont CFIDS Association Inc.
• Wisconsin ME/CFS Association, Inc.

US ME/CFS Non-profit organizations are invited to join the Coalition.

Get on the Coalitions email list here: http://www.coalition4mecfs.org/contact.html

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, Francis Creed, Functional Somatic Syndrome (FSS), Joel Dimsdale, MUS, Somatic Symptom Disorder, Somatoform Disorders

Action for M.E. publish news item on DSM-5

June 2, 2011 by

Action for M.E. publish news item on DSM-5

Post #87 Shortlink: http://wp.me/pKrrB-1a1

Yesterday, UK patient organization, Action for M.E., published an item around the DSM-5 proposals on its News pages and confirmed that it does intend submitting comment in the second DSM-5 public review exercise. Last year’s submissions from international organizations, professionals and patient advocates are collated on this page .

To the best of my knowledge, Action for M.E. is the only organization to have confirmed, so far, that it intends to submit comment in this second stakeholder review of draft criteria for the revision of DSM-IV.

The closing date for comments is June 15.

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

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

From the News pages of Action for M.E.

USA: complex somatic symptom disorder

01 June 2011

US patient organisations are lobbying against proposals to include a new psychiatric category, Complex Somatic Symptom Disorder (CSSD), in the American Diagnostic and Statistical Manual of Mental Disorders (DSM).

Version four of the manual (DSM-4) is under revision and version five (DSM-5) is due to be published May 2013.

The publication, which is produced by the American Psychiatric Association (APA), contains listings, definitions, and explanations of different psychiatric and psychological disorders.

In a letter last year, the CFIDS Association of America strongly urged the DSM-5 Task Force to abandon the proposed creation of CSSD saying:

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 as ‘somatic presentations of mental disorders.

…As drafted, the criteria for CSSD establish a ‘Catch-22’ paradox in which six months or more of a single or multiple somatic symptoms is classified as a mental disorder if the individual becomes ‘excessively’ concerned about his or her health.

The Massachusetts CFIDS/ME & FM Association says:

The way CSSD is defined makes it possible to either mistakenly or intentionally diagnose CFIDS/ME or Fibromyalgia in this psychiatric category. Moreover, the greater concern is whether this change could potentially lead to the reclassification of these illnesses as psychiatric conditions under CSSD.

The APA DSM-5 developmentsite says the draft is open for comment until 15 June.

UK campaigner Suzy Chapman has set up a website, Dx Revision Watch, which has further information.

Action for M.E. commented in response to the first consultation and will make a further representation in response to the second.

[Ends]

Filed under Action for M.E., 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

Final Call for Action by UK patient orgs – Second DSM-5 public comment period closes 15 June

May 29, 2011 by

Final Call for Action by UK patient orgs – Second DSM-5 public comment period closes 15 June

Post #86 Shortlink: http://wp.me/pKrrB-19G

This communication has been sent to the following organizations:

Action for M.E.; The ME Association; AYME; The Young ME Sufferers Trust; The 25% ME Group; RiME; Invest in ME; BRAME; ME Research UK; Mrs Sue Waddle

A version of this communication will be posted on Co-Cure and selected platforms.

Final Call for Action by UK patient organizations

 

Second DSM-5 public comment period closes 15 June

29 May 2011

The above organizations were alerted to this second public review period on 5 May, the day after revised criteria were posted on the American Psychiatric Association’s DSM-5 Development website.

To date, not one patient organization in the UK has confirmed to me that they intend to submit feedback, this year. Please take some time to review these proposals and prepare a submission or consider submitting a joint response with another UK patient organization.

The American Psychiatric Association (APA) DSM-5 Task Force is again accepting public comment on the latest proposals for the revision of DSM diagnostic criteria for psychiatric disorders.

The deadline for this second stakeholder feedback period is June 15 – less than three weeks away!

Is this a US specific issue?

No. UK and international input is required from patient organizations.

The DSM-5 “Somatic Symptom Disorders” Work Group has responsibility for the revision of the existing DSM-IV “Somatoform Disorders” categories. Two UK Professors of psychological medicine and research, Professor Michael Sharpe and Professor Francis Creed, are members of the Somatic Symptom Disorders Work Group.

The Diagnostic and Statistical Manual of Mental Disorders is the primary diagnostic system in the US for defining mental disorders and is used to varying extent in other countries. The next edition of the manual is scheduled for publication in 2013 and 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.

All UK patient organizations need to submit responses in this second review, even if they submitted last year. The latest key documents that expand on the proposals are attached for ease of reference. (Note: These documents have been revised several times since last year’s public review. Yellow highlighting has been applied by the Work Group to indicate edits and revisions between these latest versions and the texts as they had stood, earlier this year.)

What is being proposed?

The DSM-5 “Somatic Symptom Disorders” Work Group is recommending renaming the “Somatoform Disorders” section to “Somatic Symptom Disorders” and combining the 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 combining “Somatization Disorder”, “Hypochondriasis”, “Undifferentiated Somatoform Disorder” and “Pain Disorder” under a new category entitled “Complex Somatic Symptom Disorder” (CSSD). There is also a “Simple or Abridged Somatic Symptom Disorder” (SSSD) and a proposal to rename “Conversion Disorder” to “Functional Neurological Disorder”.

[Content removed as criteria for draft two superceded by criteria for draft three.]

If the various proposals of the Somatic Symptom Disorders Work Group were approved, there are considerable concerns that patients with a diagnosis of CFS, ME or PVFS, or awaiting diagnosis, would be vulnerable to the application of an additional “bolt-on” mental health diagnosis of a Somatic Symptom Disorder like “CSSD”, “SSSD” or “PFAMD”, or of misdiagnosis with a Somatic Symptom Disorder.

Because the APA and the WHO have a joint commitment to strive for harmonization between category names, glossary descriptions and criteria for DSM-5 and the corresponding categories in Chapter 5 of the forthcoming ICD-11, there could be implications for the revision of the “Somatoform Disorders” section of ICD-10 and therefore implications for UK patients – both adults and children.

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 here: http://tinyurl.com/Somatic-Symptom-Disorders

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

There are two key PDF documents, “Disorders Descriptions” and “Rationale”, which expand on the Work Group’s proposals (attached for your convenience)

             Disorders Description   Key Document One: “Somatic Symptom Disorders”

             Rationale Document     Key Document Two: “Justification of Criteria — Somatic Symptoms”

 

Which patient groups might be hurt by these proposals?

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the US 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, ME and Fibromyalgia patients as part of the agenda item around concerns for the proposed coding of CFS for the forthcoming ICD-10-CM.

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 an additional diagnosis of a “somatic symptom disorder” – if the clinician considers that the patient’s response to their bodily symptoms and concerns about their health or the perception of their level of disability is “disproportionate”, or their coping styles, “maladaptive.”

But as discussed by CFSAC Committee members, patients with CFS, ME, Fibromyalgia and IBS (the so-called “Functional somatic syndromes”) may be especially vulnerable to the highly subjective criteria and difficult to measure concepts such as “disproportionate distress and disability”, “catastrophising”, “health-related anxiety” and “[appraising] bodily symptoms as unduly threatening, harmful, or troublesome.”

In a 2009 Editorial on the progress of the Work Group, the Work Group 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.”

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 in patients with CFS and ME. There may be considerable implications for these highly subjective criteria for the diagnoses assigned to patients, the provision of social care, the payment of employment, medical and disability insurance, the types of treatment and testing insurers and health care providers are prepared to fund, and the length of time for which insurers are prepared to pay out.

Dual-diagnosis of a “general medical condition” or a so-called “functional somatic syndrome” plus a “bolt-on” diagnosis of a “Somatic symptom disorder” may bring thousands more patients, potentially, under a mental health banner where they may be subject to inappropriate treatments, psychiatric services, antidepressants 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].”

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. Patient organizations also need to submit comment.

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

This is the last alert I shall be sending out. I hope all UK patient organisations will take this opportunity to submit their concerns.

Remember, the deadline is June 15.

Thank you.

Suzy Chapman
https://dxrevisionwatch.wordpress.com

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, ICD-10-CM, ICD-11, MUS, Somatic Symptom Disorder, Somatoform Disorders, WHO (World Health Organization)

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