APA closes third and final comment period: fails to publish field trial results

June 16, 2012 by

APA closes third and final comment period: fails to publish field trial results

Post #184 Shortlink: http://wp.me/pKrrB-2gs

So that’s it.

The third and final review of draft proposals for DSM-5 categories and criteria wrapped up last night.

APA closed the DSM-5 Development site for feedback around midnight without publishing its promised report on the DSM-5 field trial results.

Stakeholders have been obliged to submit feedback without the benefit of scrutinizing reliability data or any other information about the field trials APA had intended/may still intend/does not intend publishing.

James H. Scully, Jr., M.D., American Psychiatric Association CEO and Medical Director, blogs at Huffington Post.

I’ve asked Dr Scully why the report has been withheld; whether the Task Force still intends to publish field trial data and when that report might be anticipated.

If APA is so confidence about its field trial results, why the reluctance to place this data in the public domain?

In his Huff Po commentary of May 31, Dr Scully claimed:

“…DSM-5, unlike DSM-IV, invited comments from the world, and the work groups and task force considered every one of the more than 25,000 comments received and conducted further research where indicated.”

Following the first posting of draft proposals, out on review for ten weeks in spring 2010, APA reported receiving around 8,600 submissions; for the second review, around 2,120. I’m curious about this figure of “25,000 comments.”

I’ve asked Dr Scully, will he account for that figure of a total of 25,000 comments so far? I’ll update if Dr Scully responds.

According to Task Force Vice-Chair, Darrel Regier, M.D., the specific diagnostic categories that received the most comments during the second public review and feedback exercise had been the sexual and gender identity disorders, followed closely by somatic symptom disorders and anxiety disorders.

Following closure of the two previous public reviews, APA issued statements and articles. I will update with any statements that are released.

 

What now?

Content on the DSM-5 Development site (proposals for changes to categories, criteria, rationales, severity specifiers etc) is now frozen.

The site will not be updated to reflect any revisions and edits made between June 15 and submission of final texts, later this year, for approval by APA Board of Trustees.

The remainder of the development process is set out on the Home Page under “Next Steps” and in the APA Board Materials Packet – December 10-11, 2011. This document sets out the DSM-5 Development program from December 2011 until May 2013:

Open here: Item 11.A – DSM Task Force Report

According to APA’s newly published and highly restrictive DSM-5 Permissions Policy – following closure of this third and final public review and comment period, content of DSM-5 will be under strict embargo until the manual is published.

Final text is expected to be presented to APPI, the APA’s publishing arm, by December 31 for May 2013 publication.

I shall continue to update this site with any developments and with media coverage and commentary.

 

DSM-5 Round up

At DSM 5 in Distress, Allen Frances challenges “APA Newspeak”:

DSM5 in Distress
The DSM’s impact on mental health practice and research.

Top 10 Indicators Of DSM-5 Openness
Challenging APA newspeak.

Allen Frances, M.D. | June 15, 2012

In ‘1984’, George Orwell introduced the term ‘Newspeak’ – the abuse of language by totalitarian bureaucracies to create an upside down, looking glass world of misinformation. He was probably inspired by ‘Pravda,’ the Soviet Union’s propaganda paper that literally means ‘truth’ in Russian but was famous for publishing everything but.

This brings us to the American Psychiatric Association. Its medical director recently justified the astounding $25 million APA has already spent on DSM 5 (5 times the cost of DSM IV) with a curious claim- DSM 5 was so exorbitantly expensive because it was so unprecedentedly open. This classic Newspeak kills two truth birds with one stone — DSM 5 didn’t waste a huge amount of money and DSM 5 didn’t fail because it was a closed shop. The futile hope is that black will become white if only you say it enough times.

In fact, it is very cheap to run an open process — and very expensive to run a PR disinformation campaign. It cost me nothing but an hour’s time to write this blog. How much, I wonder, will it cost APA to pay off GYMR (its high powered public relations producer of newspeak pravda) to defend its indefensible claims that DSM 5 is an open process and that it can meet its unrealistic timetable with a reliable manual?

Here is a top 10 list of great moments in the history of APA ‘openness’.

1) APA forces work group members to sign confidentiality agreements to protect DSM 5 ‘intellectual property’.

2) DSM 5 does a confidential and super-secret ‘scientific’ review of itself- real science is never secret.

3) APA rebuffs calls from 51 mental health associations for an open and independent scientific review.

4) APA’s legal office tries to stifle criticism and censor the internet using inappropriate and bullying threats of trademark litigation.

5) APA plans to steeply jack up licensing costs for use of DSM criteria sets in order to recoup its unaccountably huge investment on its ‘intellectual property’.

6) DSM 5 only reluctantly engages on the issues and instead stonewalls criticism with offensive and defensive tactics.

7) The original DSM 5 plan for field trials included no prior public viewing of criteria sets and no period for public comment. These are added only under heavy outside pressure.

8) DSM 5 publishes no aggregations of key areas of concern identified during public reviews; doesn’t respond publicly to them and there is no indication that public input has had any impact whatever on DSM 5.

9) The APA ‘charitable’ foundation (meant to provide open public education) is named by a watchdog group as the 7th worst charity in all of the US.

10) APA promises to post a complete set of DSM 5 reliability data in time to allow comments during the final period of public review- but fails to do so.

And this is just a taster. At least a dozen reporters have spontaneously mentioned to me that never in their careers have they encountered anything so byzantine as the APA press office. And dozens of APA members have emailed their frustration at not being able to get a straight (or any) answer from a staff whose salaries are paid by their membership dues.

It requires lots of time, money, and brain power to create ‘pravda.’ Perhaps this explains why everything connected with DSM 5 is always so late and so expensive and why a high flying hired gun like GYMR is needed to run its interference. The real truth is fast, cheap, and very simple to explain.

Additional research is available at Suzy Chapman’s website. She monitors DSM-5 development at https://dxrevisionwatch.wordpress.com

 

On June 13, the American Counseling Association, representing 50,000 US counselors, published its submission to DSM-5:

ACA provides final comments on the DSM-5

ACA President Don W. Locke has sent the American Psychiatric Association a letter providing final comments for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Based on comments from ACA members and the ACA DSM Task Force, the letter acknowledges useful changes that had been made to previous drafts of the DSM-5: the development of the Cultural Formulation Outline, reversing the pathologizing of normal bereavement, and limiting the expansion of personality disorder types. ACA also calls for addressing the one-dimensional nature of the new Substance Use Disorder category and rejects the proposed dimensional assessments. Click here to view letter.

This is the third letter ACA has sent to the American Psychiatric Association providing feedback for the DSM-5. Click the links below to read the previous letters and a response from APA:

 
 
 

The DSM-5 Open Letter Committee of the Society for Humanistic Psychology, Division 32 of the American Psychological Association is publishing its response to the third draft :

To the DSM-5 Task Force and the American Psychiatric Association

As you know, the Open Letter Committee of the Society for Humanistic Psychology and the Coalition for DSM-5 Reform have been following the development of DSM-5 closely.

We appreciate the opportunity for public commentary on the most recent version of the DSM-5 draft proposals. We intend to submit this brief letter via the dsm5.org feedback portal and to post it for public viewing on our website at http://dsm5-reform.com/

Since its posting in October 2011, the Open Letter to the DSM-5, which was written in response to the second version of the draft proposals, has garnered support from almost 50 mental health organizations and over 13,500 individual mental health professionals and others.

Our three primary concerns in the letter were as follows: the DSM-5 proposals appear to lower diagnostic thresholds, expanding the purview of mental disorder to include normative reactions to life events; some new proposals (e.g., “Disruptive Mood Dysregulation Disorder” and “Attenuated Psychosis Syndrome”) seem to lack the empirical grounding necessary for inclusion in a scientific taxonomy; newly proposed disorders are particularly likely to be diagnosed in vulnerable populations, such as children and the elderly, for whom the over-prescription of powerful psychiatric drugs is already a growing nationwide problem; and the increased emphasis on medico-biological theories for mental disorder despite the fact that recent research strongly points to multifactorial etiologies.

We appreciate some of the changes made in this third version of the draft proposals, in particular the relegation of Attenuated Psychosis Syndrome and Mixed Anxiety-Depression to the Appendix for further research. We believe these disorders had insufficient empirical backing for inclusion in the manual itself. In addition, given the continuing elusiveness of biomarkers, we are relieved to find that you have proposed a modified definition of mental disorder that does not include the phrase “underlying psychobiological dysfunction.”

Despite these positive changes, we remain concerned about a number of the DSM-5 proposals, as well as the apparent setbacks in the development process.

Our continuing concerns are:

• The proposal to include new disorders with relatively little empirical support and/or research literature that is relatively recent (e.g., Disruptive Mood Dysregulation Disorder)

• The lowering of diagnostic thresholds, which may result in diagnostic expansion and various iatrogenic hazards, such as inappropriate treatment and stigmatization of normative life processes. Examples include the newly proposed Minor Neurocognitive Disorder, as well as proposed changes to Generalized Anxiety Disorder, Attention Deficit/Hyperactivity Disorder, Pedophilia, and the new behavioral addictions.

• The perplexing Personality Disorders overhaul, which is an unnecessarily complex and idiosyncratic system that is likely to have little clinical utility in everyday practice.

• The development of novel scales (e.g., severity scales) with little psychometric testing rather than utilizing established standards.

In addition, we are increasingly concerned about several aspects of the development process. These are:

• Continuing delays, particularly in the drafting and field testing of the proposals.

• The substandard results of the first set of field trials, which revealed kappas below accepted reliability standards.

• The cancelation of the second set of field trials.

• The lack of formal forensic review.

• Ad hominem responses to critics.

• The hiring of a PR firm to influence the interpretation and dissemination of information about DSM-5, which is not standard scientific practice.

We understand that there have been recent attempts to locate a “middle ground” between the DSM-5 proposals and DSM-5 criticism. We believe that, given the extremity and idiosyncrasy of some of the proposed changes to the manual, this claim of a “middle ground” is more rhetorical and polemic than empirical or measured. A true middle ground, we believe, would draw on medical ethics and scientific standards to revise the proposals in a careful way that prioritizes patient safety, especially protection against unnecessary treatment, above institutional needs.

Therefore, we would like to reiterate our call for an independent scientific review of the manual by professionals whose relationship to the DSM-5 Task Force and/or American Psychiatric Association does not constitute a conflict of interest.

As the deadline for the future manual approaches, we urge the DSM-5 Task Force and all concerned mental health professionals to examine the proposed manual with scientific and expert scrutiny.

It is not only our professional standards, but also –and most importantly– patient care that is at stake. We thank you for your time and serious consideration of our concerns, and we hope that you will continue to engage in dialogue with those calling for reform of DSM-5.

Sincerely,

The DSM-5 Open Letter Committee of the Society for Humanistic Society, Division 32 of the American Psychological Association

Filed under Allen Frances, American Psychiatric Association (APA), David Kupfer, DSM revision process, DSM-5 consultation, DSM-5 draft proposals, DSM-5 field trials, DSM-5 in the media, DSM-5 third draft, DSM-5 timeline Tagged with , , , , , , , , ,

Final day: Submissions to third DSM-5 stakeholder review

June 15, 2012 by

Final day: Submissions to third DSM-5 stakeholder review

Post #183 Shortlink: http://wp.me/pKrrB-2fn

The third and final stakeholder review is scheduled to close today, Friday, June 15.

I am collating copies of submissions on these pages.

A copy of my own comment is published below in text and PDF format. If you are unable to submit your own letter or short of time, please consider endorsing Mary Dimmock’s submission or one of the other submissions or one from last year with a note to say that although the criteria have been revised since last year, the underlying concerns remain.

 

Submission from UK advocate Suzy Chapman

Full text in PDF:     Chapman DSM-5 submission 2012

For the attention of the Somatic Symptom Disorders Work Group: Chair Joel E. Dimsdale, M.D.

Submitted by Suzy Chapman, advocate and parent/carer of young adult with chronic illness.
Website owner of https://dxrevisionwatch.wordpress.com formerly http://dsm5watch.wordpress.com

Submission in response to J 00 Somatic Symptom Disorder

I note that at June 14, APA has published no report on the results of the DSM-5 field trials. The majority of stakeholders wishing to provide feedback on this third release of draft proposals have no information on the make-up of the SSD study groups, the numbers studied within each of the three arms or the resulting data.

  • Stakeholders have been obliged to submit comment without the benefit of scrutiny of field trial results to inform their submissions. This is not acceptable.

For the first and second release of draft proposals, a 7 page “Disorders Description” document and a 14 page “Rationale/Validity Propositions/Justification of Criteria” document accompanied proposals and expanded on the website Proposals, Criteria, Rationale and Severity content for this category section. In the case of the latter, this included five pages of references to published and unpublished papers, including a number of papers authored or co-authored by members of the SSD Work Group. With the release of this third and final draft, no updated versions of these two documents were published that reflect significant revisions to SSD criteria between the second and third draft. The unrevised versions have been removed from the website.

  • Stakeholders have been denied access to the more expansive rationales and validity propositions set out within these two documents, the research papers that have been relied on and more detailed explanations for the revisions made to criteria between the second and third iterations in response to field trial results and internal/external input. If the Work Group considered these documents essential background information for the first and second drafts it is unreasonable not to have provided stakeholders with updated versions for this third draft.

The “Rationale/Validity Propositions/Justification of Criteria” document (as published May 4, 2011, for the second public review) 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 6 diagnoses because they find them confusing or pejorative. So, with the CSSD classification, there may be an increase in diagnosis.”

Continued on Page 2

Filed under American Psychiatric Association (APA), DSM revision process, DSM-5 draft proposals, DSM-5 field trials, DSM-5 third draft, Functional Somatic Syndrome (FSS), Kappa, MUS, Somatic Symptom Disorder, Somatoform Disorders Tagged with , , , , , , , , ,

Patient submissions to third and final DSM-5 stakeholder review

June 14, 2012 by

Patient submissions to third and final DSM-5 stakeholder review

Post #182 Shortlink: http://wp.me/pKrrB-2f5

This third and final stakeholder review is scheduled to close on Friday. If an extension is announced I will update.

As with the two previous draft reviews, in 2010 and 2011, I am collating copies of submissions on these pages.

If you have submitted to the Somatic Symptom Disorder proposals or are a professional, professional body or advocacy organization that has submitted a general response which includes reference to the  Somatic Symptom Disorder proposals I would be pleased to receive a copy for publication on this site. Submissions will be published subject to review and posted in PDF format if more than a few pages long.

The most recent submission received is from “US patient 1”. This is a detailed response which I am publishing in both text and PDF format. (Note that as far as I can see submissions can only be uploaded to the DSM-5 Development site using the RT or html text editor and not as file attachments.)

Submission from US patient 1 to J 00 SSD and J 02 Conversion Disorder (FNSD)

Full text in PDF:    DSM-5 submission

To: DSM-5 Task Force, Somatic Symptom Disorders Work Group
From: _______
Re: Response on the Proposals for Somatic Symptom Disorder and Conversion Disorder
Date: June 12, 2012

The DSM-5 Task Force has thus far failed to address the conceptual and practical problems inherent in DSM-IV somatoform disease constructs. Specifically, its proposals for Somatic Symptom Disorder and Conversion Disorder are actually more flawed than their equivalents in DSM-IV. The criteria for these two diagnoses rely excessively upon purely subjective judgments by clinicians and on the extent of a clinician’s awareness of known diseases, and lack the specificity required of valid diagnostic constructs.

To understand just how strongly subjectivity of clinical interpretation can impact diagnostic outcome when using somatoform disorder criteria on a disease with unknown etiology, it is instructive to consider in some detail Johnson et al’s “Assessing Somatization Disorder in Chronic Fatigue Syndrome”1, a study on the reliability of DSM-III-R somatization disorder (SD) criteria and related instruments when applied to patients with chronic fatigue syndrome (CFS). As the DSM-III-R SD diagnostic construct was less subjective and had greater specificity in terms of symptom presentation than the proposed SSD criteria, a careful examination of its flaws, as demonstrated by this study, offers a sobering perspective on real world application of SSD criteria.

CFS is a somatic disease of unestablished etiology; the United States Centers for Disease Control has stated that “Research shows that CFS is not a form of psychiatric illness” and that an essential criterion for its diagnosis is “severe chronic fatigue of 6 months or longer that is not explained by any medical or psychiatric diagnosis”. Nevertheless, in spite of such evidence, an opinion persists in the medical community that CFS is in some way a psychosomatic illness, an opinion which can easily influence clinicians in their diagnoses of patients who satisfy CFS criteria. Thus, as Johnson et al noted: “Whether or not symptoms of CFS are considered medically caused will strongly affect the incidence of SD within the CFS population…If the examiner recognizes that the patient’s CFS symptoms indicate a physical illness, the diagnosis of SD may not be made. Conversely, if the examiner does not consider CFS a medical illness, the patient’s symptom endorsement may lead to the diagnosis of SD.”

To begin with, Johnson et al discussed the problems with the DSM-III-R criteria for somatization disorder:

“According to DSM-III-R .. the diagnosis of somatization disorder (SD) requires a person to present with at least 13 symptoms for which no significant organic pathology can be found. The symptoms must have caused the person to take medication, to see a physician, or to have altered her/his lifestyle. The disorder begins before the age of 30 and has a chronic but fluctuating course. However, the diagnosis of SD is extremely problematic in terms of its validity because it involves a series of judgments that can be arbitrary and subjective […] Specifically, the interviewer must decide if the symptom reported is attributable to an identifiable medical illness. Although such judgments are extremely difficult to make uniformly, the influence of bias introduced by the interviewer’s orientation on the prevalence of SD has not been adequately addressed.”

They noted the high variation between the estimates of SD prevalence in CFS patient cohorts reported by previous studies and concluded that it was “in itself indicative of the problem in defining SD”. They further pointed out that “The difficulty in distinguishing among somatic symptoms that are psychiatric vs. organic in origin can result in overdiagnosis of SD in medical illness, particularly chronic illness”, as they had observed in several studies by other authors on somatization in CFS.

Filed under American Psychiatric Association (APA), DSM revision process, DSM-5 draft proposals, DSM-5 field trials, DSM-5 third draft, Functional Somatic Syndrome (FSS), Kappa, MUS, Somatic Symptom Disorder, Somatoform Disorders Tagged with , , , , , , , ,

Final 2 days: Submissions to third DSM-5 stakeholder review

June 13, 2012 by

 

Final 2 days for Submissions to third DSM-5 stakeholder review

Post #181 Shortlink: http://wp.me/pKrrB-2eX

There are only Thursday and Friday left before this third and final stakeholder review of proposals for DSM-5 categories and diagnostic criteria closes.

APA has failed to publish “full results” of its field trials – obliging professional, patient and public stakeholders to submit comment without the benefit of scrutinizing field trial data. That’s another APA schedule missed.

If any extension to the comment period is announced I will update.

The DSM-5 Development site has been slow to load, today, probably due to volume of traffic for both US and UK visitors and in some cases, not loading at all. If you are having problems try pulling up a page other than the Home Page and allow several minutes to load.

As with the two previous reviews, I am collating copies of submissions on these pages.

If you have submitted to the Somatic Symptom Disorder proposals or are a professional, professional body or advocacy organization that has submitted a general response which includes reference to the  Somatic Symptom Disorder proposals I would be pleased to receive a copy for publication on this site, subject to review, and posted in PDF format if more than a few pages long.

The most recent published submission is from “Joss”:

Submission from UK patient, Joss

I am writing to voice my concerns concerning the proposed category of Somatic Symptom Disorder.

Theoreticians of illness classification such as yourselves should be aware of the actual harm that could be caused to real people should this category be included in the DSM.

I would like to focus your minds with a real world example of how such a label might cause actual harm:

In 1998 I hurt my back. A scan showed a herniated disc but no further action was considered necessary. For the next three years my life was devastated by pain, I had bedsores and was pissing myself in bed from being unable to move. I believe that this was not taken seriously because I already had a pre-existing diagnosis of ME/CFS. The disbelief around my ME/CFS had already caused me problems obtaining the necessary help from medical services.

I believe that doctors thought I was ‘catastrophising’ and that had the SSD label been available to them they would have been able to categorise me as having:

‘Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns’

and, further, apply the three following highly subjective statements to me:

(1) Disproportionate and persistent thoughts about the seriousness of one’s symptoms.

(2) Persistently high level of anxiety about health or symptoms

(3) Excessive time and energy devoted to these symptoms or health concerns

I had CBT via a pain clinic but things got progressively worse. The CBT was of no help because it can not mend discs. I was, I admit, by this time feeling a tad suicidal because nobody would listen to me or believe that things were as bad as they were.

In 2001 I called an ambulance and went to the emergency department. The doctor was fine until he consulted my notes and saw I had an ME/CFS diagnosis. I was given morphine and they wanted to send me home.

It was only by refusing to leave that I gained admission to the hospital where a further scan was undertaken and it was found that a piece of disc had got in to my spinal canal and was pressing on my spinal cord. The next day I was in surgery and told that I would have been paralysed for life without it.

I would like you to reflect on how much worse the situation might have been if I had also been labelled as having SSD and on what happens when the SSD label is wrongly applied.

If someone is very ill and in pain is it not normal to feel distressed? How much distress is too much? Who decides what the right amount of distress for any given situation is?

What does ‘disproportionate’ mean in such a situation?

Is feeling anxious about such things not simply a normal and sane reaction to such circumstances?

And as for ‘excessive time and energy’ – well being bedridden and unable to move for whatever reason makes it a little hard to think of much else for much of the time.

To take such a lack of understanding of subjective experience of severe physical symptoms and construct a spurious and vague illness category from them is not only philosophically flawed it is dangerous to those who may be labelled in such a way.

This definition is far too vague and leaves far too much room for definitional ‘creep’, misinterpretation, misuse and even abuse.

It could certainly lead to possible missed diagnosis should a patient be placed in the SSD group and then continually disbelieved because of the label and left with no hope of getting to the bottom of the problem. To leave people without hope can only be called cruel

I am concerned that many illnesses such as ME/CFS, fibromyalgia and pain syndromes, and back problems which are often hard to diagnose and treat and can be a considerable burden to those who have to live with them will get drawn into the SSD basket and that, once there, patients will lose all hope of receiving any appropriate bio-medical treatment.

I am sure you are aware that medicine does move forward and that many illnesses once defined as psychiatric or psychological or simply beyond the reach of scientific clarity are now no longer considered ‘medically unexplained’. Just because there is currently no ‘medical’ explanation for a specific symptom and no understanding of how somebody might experience that symptom does not automatically render it a problem for psychology or psychiatry.

Filed under American Psychiatric Association (APA), DSM revision process, DSM-5 draft proposals, DSM-5 field trials, DSM-5 third draft, Functional Somatic Syndrome (FSS), Kappa, MUS, Somatic Symptom Disorder, Somatoform Disorders Tagged with , , , , , , , , ,

National ME/FM Action Network (Canada) submission to DSM-5 third draft

June 12, 2012 by

National ME/FM Action Network (Canada) submission to DSM-5 third draft

Post #180 Shortlink: http://wp.me/pKrrB-2eK

Submitted by the National ME/FM Action Network (Canada) to the APA, June 11, 2012

For the attention of the Somatic Symptom Disorders Work Group :

The National ME/FM Action Network, the association representing Canadians with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia, wrote to you a year ago asking you to refrain from including Complex Somatic Syndrome Disorder (CSSD) in the proposed DSM-5. A copy of our previous letter is attached below.

We note that, in the new version of DSM-5, CSSD has been rolled into the category Somatic Symptom Disorders (SSD). This does absolutely nothing to allay our concerns.

ME/CFS and Fibromyalgia are not psychiatric illnesses. They should be handled like other chronic physical diseases. If the symptoms cause patients to become worried or discouraged, the appropriate response would be to try to reduce the stresses experienced by patients or to increase the support they receive. As for all chronic diseases, treatment for anxiety or depression may be helpful in some cases. This is already possible under the DSM. The SSD category adds no new services for patients.

Patients with ME/CFS and Fibromyalgia feel especially vulnerable under the SSD category because these illnesses are frequently discounted or under-appreciated and, as a result, appropriate expressions of concern by patients can be perceived as excessive. Labelling the patient as over-reacting makes it easy for the health and social service systems to blame the patients for their situation and to discount their legitimate concerns. The potential for misuse and abuse of patients through the new SSD category is enormous.

We asked in the strongest possible terms that SSD be dropped from DSM-5.

Margaret Parlor
President
NATIONAL ME/FM ACTION NETWORK
www.mefmaction.com

June 2011

For the attention of the Somatic Symptom Disorders Work Group :

The National ME/FM Action Network works on behalf of Canadians with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia. Our organization was founded in 1993 and has many accomplishments to its credit. A leading accomplishment was spearheading the development of the Canadian Consensus diagnostic and treatment protocols for ME/CFS and Fibromyalgia. These criteria are receiving strong international support. Another major accomplishment was publishing statistics on these conditions. Our analysis, based on a major Statistics Canada survey, showed that there were 628,500 Canadians diagnosed with one or both of these conditions in 2005 and that they experienced high degrees of disability, disadvantage and unmet needs in comparison with other chronic illness cohorts.

Diagnostic criteria are very important. DSM-5 will be used to determine who qualify for psychiatric services. Criteria are problematic if they result in false negatives (people who do not qualify for services but who would benefit from them) or false positives (people who qualify for services do not benefit from them). We are concerned the proposed new category for Chronic Somatic Syndrome Disorder (CSSD) will result in an unacceptable number of false positives in the ME/FM community.

A fundamental question is how psychiatry can help patients with ME/CFS and Fibromyalgia.

Some psychiatrists have proposed Cognitive Behaviour Therapy as a treatment for Chronic Fatigue Syndrome. A recent UK study examined the benefits of CBT for patients with CFS. Patient groups have pointed out numerous issues around the study design and how study population was selected and would reject the study as badly flawed. However, even taking the study at face value, the study showed that CBT was of minor benefit to patients, akin to the benefits of CBT for other chronic illnesses. CBT does not get to the heart of the illness. ME/CFS and Fibromyalgia are not psychiatric disorders.

Our position on the role of psychiatry is simple and clear. We think that psychiatry should play the same role for ME/CFS and Fibromyalgia patients as it does for patients with other chronic physical illnesses like cancer, diabetes or arthritis. Those patients receive psychiatric support if and only if psychiatric issues are apparent after medical and social supports in place. We would like to refer you to a document entitled “Assessment and Treatment of Patients with ME/CFS; Clinical Guidelines for Psychiatrists” by Dr. Eleanor Stein, a Canadian psychiatrist. This document describes an appropriate role for psychiatrists in assessing and treating ME/CFS, respecting the reality of the illness.

Over the years, we have heard many stories from patients with ME/CFS or Fibromyalgia who went to a doctor for help only to be fobbed off to a psychiatrist because the family doctor did not believe their symptoms or did not know how to help, rather than because the patient needs psychiatric services. This situation does not help patients – it denies their experiences, it undercuts their credibility and it distracts from their real issues. This situation does not help psychiatry either as it is called upon to solve problems that it cannot solve.

The new Complex Somatic Syndrome Disorder category could compound this situation. A patient with ME/CFS or Fibromyalgia would get a diagnosis of CSSD if a doctor believes the patient is overreacting to the illness, even if the patient is actually behaving very rationally. The patient would be labelled with a undeserved, unhelpful and misleading psychiatric label which would make dealing with the core health issues even more difficult than they already are.

The CSSD category could be very harmful to patients with ME/CFS and Fibromyalgia. We ask you to refrain from including CSSD in DSM-5 in the absence of protections to ensure that patients with ME/CFS and Fibromyalgia do not receive false positive diagnoses.

Margaret Parlor
President
NATIONAL ME/FM ACTION NETWORK

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 field trials, Somatic Symptom Disorder, Somatoform Disorders Tagged with , , , , , , , , ,

Action for M.E. submission to third and final DSM-5 public review (closes June 15)

June 12, 2012 by

Action for M.E. submission to third and final DSM-5 public review (May 2 – June 15 2012)

Page #179: Shortlink: http://wp.me/pKrrB-2eC

A reminder there are just 4 days left in which to submit feedback.

Comment period scheduled to close June 15.

Organizations, professionals, patients and advocates submitting comments in the third DSM-5 draft proposal review process are invited to provide me with copies of their submissions for publication. Submissions to the third and final DSM-5 public review are being collated on this page: http://wp.me/PKrrB-1Ol

Today, Action for M.E., has forwarded its response to the third draft:

Action for M.E.

DSM-5 Action for M.E. response

12 June 2012

Action for M.E. has formally commented on the latest draft of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), due to be published in May 2013 by the American Psychiatric Association (APA).

We told the APA that:

“Action for M.E. notes the revised draft of DSM-5 and remains opposed to any attempt to classify CFS/M.E. as a somatic symptom disorder either explicitly or implicitly.

Comments made previously in the APA Work Group on somatoform disorders and in public by Dr Dimsdale, the SSD Work Group Chair, are far from reassuring in this respect.

Regrettably there are still General Practitioners in the UK who fail to take CFS/ME seriously and are ill informed about how to achieve a specific diagnosis. So there should be nothing in DSM-5 that will give any support to outdated views that are severely detrimental to patient care.

The presumption that ME/CFS is a somatic symptom disorder is not supported by the increasing body of research evidence pointing to the existence of underlying physical pathology. While not challenging the underlying structure of DSM-V, in our view ME/CFS would be appropriately classified in sections S03 or S04, mild or severe neurocognitive disorders secondary to underlying physical diseases, in particular neurodegenerative diseases.”

We have also responded to previous drafts.

Related content and posts:

Somatic Symptom Disorders, DSM-5 Development site

Call to action – DSM-5 comments needed by June 15, 2012:  http://wp.me/pKrrB-2bO

Somatic Symptom Disorder criteria could capture millions more under mental health diagnosis: http://wp.me/pKrrB-29B

DSM-5 Somatic Symptom Disorders: Differences between second and third draft for CSSD: http://wp.me/pKrrB-27y

DSM-5 Somatic Symptoms Work Group submissions 2012: Last chance to tell SSD Work Group why it needs to ditch unsafe and scientifically flawed proposals: http://wp.me/pKrrB-26q

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-5 third draft, Somatic Symptom Disorder, Somatoform Disorders Tagged with , , , , , , , ,

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