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

 

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.

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

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

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

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

DSM-5 round-up: Lane on “DSM-5 Facts” site, Frances on DSM-5, Kupfer on Frances

DSM-5 round-up: Lane on new “DSM-5 Facts” site, Frances on DSM-5, Kupfer on Frances

Post #176 Shortlink: http://wp.me/pKrrB-2cQ

What we were waiting for were the “full results” of the reliability data from the DSM-5 field trials.

What we got was a public relations sticking plaster.

Christopher Lane reported in Side Effects on the American Psychiatric Association’s new platform DSM-5 Facts – a website launched, last week, to “correct the record, highlight key omissions – and provide essential perspective so that the public has a complete and accurate view…

Side Effects

Christopher Lane, Ph.D. | June 4, 2012

The APA’s PR Problem
Why is the American Psychiatric Association hiring a PR company to market DSM-5?

As the news tumbled out last week that the American Psychiatric Association had hired GYMR, an expensive PR company, to help the organization “execute strategies that include image and alliance building, public education campaigns or media relations to harness the formidable forces of Washington and produce successful results for clients” (services that GYMR brags about in its mission statement), it became clearer than ever that the APA has more than an image-problem with DSM-5

Read on

In a long interview with Allen Frances, Stephen M. Strakowski asks: What’s wrong with DSM-5 and what needs to be done to put it right?

Medscape Psychiatry

What’s Wrong With DSM-5?

Stephen M. Strakowski, MD; Allen J. Frances, MD | June 1, 2012

Addressing Prescription Drug Abuse: Introduction
The Biggest Problems With DSM-5?
What Would Dr. Frances Do?
A Safe, Credible DSM-5 by 2013?

…The reliability-test results for stage 1 show that DSM-5 badly flunked and that stage 2 is desperately needed. The leadership lowered expectations with statements indicating that they are willing to accept diagnostic agreements far below historical levels and include proposals achieving diagnostic agreements that are little better than chance. This is simply not acceptable and should not be accepted…

…it is discouraging that DSM-5 has not accepted the need for external review, is going forward with poorly written and unreliable criteria sets, and still contains so many unsafe and scientifically unsound proposals. It remains to be seen whether DSM-5 will be responsive to what is certain to be increasing external pressure to trim its sails and improve its quality. If it attempts to hang tough, I think DSM-5 will no longer be used much (if at all) overseas and will also lose much of its following in the United States…

Task Force Chair, David J. Kupfer, MD, responds:

Medscape Psychiatry

Dr. Kupfer Defends DSM-5

David J. Kupfer, MD | June 1, 2012

Editor’s Note:
In a recent Medscape interview with Dr. Stephen Strakowski, DSM-IV Task Force Chair Dr. Allen J. Frances expressed serious concerns about a number of proposals being considered for inclusion in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), scheduled for release in May 2013. Below, DSM-5 Task Force Chair Dr. David Kupfer defends the proposed revision.

A DSM-5 Defense
Will DSM-5 Inflate Prevalence?

A third Medscape report from the APA’s Annual Conference by Nassir Ghaemi, MD:

Medscape Psychiatry

DSM-5: Finding a Middle Ground

Nassir Ghaemi, MD | June 1, 2012

Professor of Psychiatry, Tufts University School of Medicine; Director, Mood Disorders Program, Psychiatry Department, Tufts Medical Center, Boston, Massachusetts

DSM-5: Validity vs Reliability
But DSM-IV Has Limitations, Too

Two more commentaries from 1 Boring Old Man on DSM-5 process and field trial Kappa results:

the APA Trustees must intervene in the DSM-5…

1 Boring Old Man | June 4, 2012

and will…

1 Boring Old Man | June 3, 2012

Somatic Symptom Disorder could capture millions more under mental health diagnosis

Somatic Symptom Disorder could capture millions more under mental health diagnosis

Post #172 Shortlink: http://wp.me/pKrrB-29B

By Suzy Chapman | Dx Revision Watch

Update: My submission to the Somatic Symptom Disorder Work Group in response to the third DSM-5 draft and stakeholder review can be read here: Chapman Response to Third Draft DSM-5 SSD Proposals

May 26, 2012

While media and professional attention has been focused on the implications for introducing new disorders into the DSM and lowering diagnostic thresholds for existing categories, the Somatic Symptom Disorders (SSD) Work Group has been quietly redefining DSM’s Somatoform Disorders with radical proposals that could bring millions more patients under a mental health diagnosis.

The SSD Work Group is proposing to rename the Somatoform Disorders section of DSM-IV to “Somatic Symptom Disorders,” eliminate four existing  DSM-IV categories: somatization disorder [300.81], hypochondriasis [300.7], pain disorder*, and undifferentiated somatoform disorder [300.82] and replace them with a single new category – “Somatic Symptom Disorder.”

*In DSM-IV: Pain Disorder associated with a general medical condition (only): Psychological factors, if present, are judged to play no more than a minimal role. This is not considered a mental disorder so it is coded on Axis III with general medical conditions.See http://behavenet.com/pain-disorder for definitions and criteria for other DSM-IV presentations of Pain disorder.  For DSM-5, it appears that all presentations of Pain disorder will be subsumed under the new SSD category.

If approved, these proposals will license the application of a mental health diagnosis for all illnesses – whether “established general medical conditions or disorders” like diabetes, heart disease and cancer or conditions presenting with “somatic symptoms of unclear etiology” – if the clinician considers the patient is devoting too much time to their symptoms and that their life has become “subsumed” by health concerns and preoccupations, or their response to distressing somatic symptoms is “excessive” or “disproportionate,” or their coping strategies “maladaptive.”

Somatoform Disorders – disliked and dysfunctional

The SSD Work Group, under Chair, Joel E. Dimsdale, MD, says current terminology for the Somatoform Disorders is confusing and flawed; that no-one likes these disorders and they are rarely used in clinical psychiatric practice. Primary Care physicians don’t understand the terms and patients find them demeaning and offensive [1,2].

The group says the terms foster mind/body dualism; that the concept of “medically unexplained” is unreliable, especially in the presence of medical illness, and cites high prevalence of presentation with “medically unexplained somatic symptoms” (MUS) in general medical settings – 20% in Primary Care, 40% in Specialist Care, 33-61% in Neurology; that basing a diagnosis of psychiatric disorder on MUS alone is too sensitive.

The Work Group might have considered dispensing altogether with a clutch of disliked, dysfunctional categories. Instead, the group proposes to rebrand these disorders and assign new criteria that will capture patients with diverse illnesses, expanding application of psychiatric services, antidepressants and behavioural therapies like CBT, for the “modification of dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors.”

Focus shifts from “medically unexplained” to “excessive thoughts, behaviors and feelings”

The Work Group’s proposal is to deemphasize “medically unexplained” as the central defining feature of this disorder group.

For DSM-5, focus shifts to the patient’s cognitions – “excessive thoughts, behaviors and feelings” about the seriousness of distressing and persistent somatic (bodily) symptoms – which may or may not accompany diagnosed general medical conditions – and the extent to which “illness preoccupation” is perceived to “dominate” or “subsume” the patient’s life.

“[The SSD Work Group’s] framework 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…” [3]

“…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…” [4]

To meet requirements for Somatization Disorder (300.81) in DSM-IV, a considerably more rigorous criteria set needed to be fulfilled: a history of many medically unexplained symptoms before the age of thirty, resulting in treatment sought or psychosocial impairment. The diagnostic threshold was set high – a total of eight or more medically unexplained symptoms from four, specified symptom groups, with at least four pain and two gastrointestinal symptoms.

In DSM-5, the requirement for eight symptoms is dropped to just one.

One distressing symptom for at least six months duration and one “B type” cognition is all that is required to tick the box for a bolt-on diagnosis of a mental health disorder – cancer + SSD; angina + SSD; diabetes + SSD; IBS + SSD…

The most recent proposals for new category “J 00 Somatic Symptom Disorder.”

Note that the requirement for “at least two from the B type criteria” for the second draft has been reduced to “at least one from the B type criteria” for the third iteration of draft proposals. This lowering of the threshold is presumably in order to accommodate the merging of the previously proposed “Simple Somatic Symptom Disorder” category into the “Complex Somatic Symptom Disorder” category, a conflation now proposed to be renamed to “Somatic Symptom Disorder.” No revised “Disorder Description” and “Rationale/Validity” documents reflecting the changes made between draft two and draft three were issued for the third and final draft.

Ed: Update: Following closure of the third stakeholder review on June 15, 2012, proposals, criteria and rationales were frozen and the DSM-5 Development website was not updated to reflect any subsequent revisions. Proposals, criteria and rationales, as posted for the third draft in May 2012, were removed from the DSM-5 Development website on November 15, 2012 and placed behind a non public log in. Consequently, criteria as they had stood for “Somatic Symptom Disorder” at the point at which the third draft was issued can no longer be accessed but are set out on Slide 9 in this presentation, which note, does not include three, optional Severity Specifiers that were included with the third draft criteria. Since any changes to the drafts are embargoed in preparation for publication of DSM-5, in May 2013, I cannot confirm whether any changes have been made to the draft subsequent to June 15, 2012.

IASP and the Classification of Pain in ICD-11  Prof. Dr. Winfried Rief, University of Marburg, Germany

Slide 9

Rief Presentation ICD-11 Pain

How are highly subjective and difficult to measure constructs like “Disproportionate and persistent thoughts about the seriousness of one’s symptoms” and “Excessive time and energy devoted to these symptoms or health concerns” to be operationalized?

By what means would a practitioner determine how much of a patient’s day spent “searching the internet looking for data” (to quote an example of the SSD Work Group Chair) might be considered a reasonable response to chronic health concerns and what should be coded as “excessive preoccupation” or indicate that this patient’s life has become “subsumed” or “overwhelmed” by concerns about illness and symptoms? One hour day? Two hours? Three?

At the APA’s Annual Conference earlier this month, SSD Work Group Chair, Joel E. Dimsdale, presented an update on his group’s deliberations. During the Q & A session, an academic professional in the field expressed concern that practitioners who are not psychiatric professionals or clinicians might have some difficulty interpreting the wording of the B type criteria to differentiate between negative and positive coping strategies.

Dr Dimsdale was asked to expand on how the B type criteria would be defined and by what means patients with chronic medical conditions who devote time and energy to health care strategies to try to improve their symptoms and level of functioning would be evaluated in the field by the very wide range of DSM users; how would these patients be differentiated from patients considered to be spending “excessive time and energy devoted to symptoms or health concerns” or perceived as having become “absorbed” by their illness?

I am not persuaded by Dr Dimsdale’s reassurances that his Work Group will try to make this “crystal clear” in the five to six pages of manual text in the process of being drafted for this disorder chapter. Nor am I reassured that these B (1), (2) and (3) criteria can be safely applied outside the optimal conditions of field trials, in settings where practitioners may not necessarily have the time for, nor instruction in administration of diagnostic assessment tools, and where decisions to code or not to code may hang on arbitrary and subjective perceptions of DSM end-users lacking clinical training in the use of the manual text and application of criteria.

Implications for a diagnosis of SSD for all patient populations

Incautious, inept application of criteria resulting in a “bolt-on” psychiatric diagnosis of a “Somatic Symptom Disorder” could have far-reaching implications for all patient populations:

Application of highly subjective and difficult to measure criteria could potentially result in misdiagnosis with a mental health disorder, misapplication of an additional diagnosis of a mental health disorder or missed diagnoses through dismissal and failure to investigate new or worsening somatic symptoms.

Patients with cancer and life threatening diseases may be reluctant to report new symptoms that might be early indicators of local recurrence, metastasis or secondary disease, for fear of attracting a diagnosis of “SSD” or of being labelled as “catastrophisers.”

Application of an additional diagnosis of Somatic Symptom Disorder may have implications for the types of medical investigations, tests and treatments that clinicians are prepared to consider and which insurers prepared to fund.

Application of an additional diagnosis of Somatic Symptom Disorder may impact payment of employment, medical and disability insurance and the length of time for which insurers are prepared to pay out. It may negatively influence the perceptions of agencies involved with the assessment and provision of social care, disability adaptations, education and workplace accommodations.

Patients prescribed psychotropic drugs for perceived unreasonable levels of “illness worry” or “excessive preoccupation with symptoms” may be placed at risk of iatrogenic disease or subjected to inappropriate behavioural therapies.

For multi-system diseases like Multiple Sclerosis, Behçet’s syndrome or Systemic lupus it can take several years before a diagnosis is arrived at. In the meantime, patients with chronic, multiple somatic symptoms who are still waiting for a diagnosis would be vulnerable.

The burden of the DSM-5 changes will fall particularly heavily upon women who are more likely to be casually dismissed when presenting with physical symptoms and more likely to receive inappropriate antidepressants and anti-anxiety medications for them.

Proposals allow for the application of a diagnosis of Somatic Symptom Disorder where a parent is considered excessively concerned with a child’s symptoms [3]. Families caring for children with any chronic illness may be placed at increased risk of wrongful accusation of “over-involvement” with a child’s symptomatology.

Where a parent is perceived as encouraging maintenance of “sick role behaviour” in a child, this may provoke social services investigation or court intervention for removal of a sick child out of the home environment and into foster care or for enforced in-patient “rehabilitation.” This is already happening in families with a child or young person with chronic illness, notably with Chronic fatigue syndrome or ME. It may happen more frequently with a diagnosis of a chronic childhood illness + SSD.

Dustbin diagnosis?

Although the Work Group is not proposing to classify Chronic fatigue syndrome, IBS and fibromyalgia, per se, within the Somatic Symptom Disorders, patients with CFS – “almost a poster child for medically unexplained symptoms as a diagnosis,” according to Dr Dimsdale’s presentation – or with fibromyalgia, irritable bowel syndrome, chronic Lyme disease, Gulf War illness, chemical injury and chemical sensitivity may be particularly vulnerable to misapplication or misdiagnosis with a mental health disorder under these SSD criteria.

There is considerable concern that this new Somatic Symptom Disorder category will provide a “dustbin diagnosis” in which to shovel the so-called “functional somatic syndromes.”

15% of “diagnosed illness” and 26% of “functional somatic” captured by SSD criteria

For testing reliability of CSSD criteria, three groups were studied for the field trials:

488 healthy patients; a “diagnosed illness” group of 205 patients with cancer and malignancy (some in this group were said to have severe coronary disease) and a “functional somatic” group comprising 94 people with irritable bowel and “chronic widespread pain” (a term used synonymously with fibromyalgia).

Patients in the study were required to meet one to three cognitions: Do you often worry about the possibility that you have a serious illness? Do you have the feeling that people are not taking your illness seriously enough? Is it hard for you to forget about yourself and think about all sorts of other things?

Dr Dimsdale reports that if the response was “Yes – a lot.” then [CSSD] was coded.

15% of the cancer and malignancy group met SSD criteria when “one of the B type criteria” was required; if the threshold was increased to “two B type criteria” about 10% met criteria for dual-diagnosis of diagnosed illness + Somatic Symptom Disorder.

For the 94 irritable bowel and “chronic widespread pain” study group, about 26% were coded when one cognition was required; 13% coded with two cognitions required.

Has the SSD Work Group produced projections for prevalence estimates and potential increase in mental health diagnoses across the entire disease landscape?

Did the Work Group seek opinion on the medico-legal implications of missed diagnoses?

Has the group factored for the clinical and economic burden of providing CBT for modifying perceived “dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors” in patients for whom an additional diagnosis of Somatic Symptom Disorder has been coded?

Where’s the science?

Dr Dimsdale admits his committee has struggled from the outset with these B type criteria but feels its proposals are “a step in the right direction.”

The group reports that preliminary analysis of field trial results shows “good reliability between clinicians and good agreement between clinician rated and patient rated severity.” In the trials, CSSD achieved Kappa values of .60 (.41-.78 Confidence Interval).

Kappa reliability reflects agreement in rating by two different clinicians corrected for chance agreement – it does not mean that what they have agreed upon are valid constructs.

Radical change to the status quo needs grounding in scientifically validated constructs and a body of rigorous studies not on pet theories and papers (in some cases unpublished papers) generated by Dr Dimsdale’s work group colleagues.

Where is the substantial body of independent research evidence to support the group’s proposals?

“...To receive a diagnosis of complex somatic symptom disorder, patients must complain of at least one somatic symptom that is distressing and/or disruptive of their daily lives. Also, patients must have at least two [Ed: now reduced to at least one since evaluation of the CSSD field trials] of the following emotional/cognitive/behavioral disturbances: high levels of health anxiety, disproportionate and persistent concerns about the medical seriousness of the symptom(s), and an excessive amount of time and energy devoted to the symptoms and health concerns. Finally, the symptoms and related concerns must have lasted for at least six months.”

“Future research will examine the epidemiology, clinical characteristics, or treatment of complex somatic symptom disorder as there is no published research on this diagnostic category.”

“…Just as for complex somatic symptom disorder, there is no published research on the epidemiology, clinical characteristics, or treatment of simple somatic symptom disorder.”

Source: Woolfolk RL, Allen LA. Cognitive Behavioral Therapy for Somatoform Disorders. Standard and Innovative Strategies in Cognitive Behavior Therapy.

Where are the professionals?

During the second public review, the Somatic Symptom Disorders proposals attracted more responses than almost any other category. The SSD Work Group is aware that patients, caregivers and patient advocacy organizations have considerable concerns. But are medical and allied health professionals scrutinizing these proposals?

This is the last opportunity to submit feedback. Psychiatric and non psychiatric clinicians, primary care practitioners and specialists, allied health professionals, psychologists, counselors, social workers, lawyers, patient advocacy organizations – please look very hard at these proposals, consider their safety and the implications for an additional diagnosis of an SSD for all patient illness groups and weigh in with your comments by June 15.

Criteria and rationales for the third iteration of proposals for the DSM-5 Somatic Symptom Disorders categories can be found here on the DSM-5 Development site. [Update: Proposals were removed from the DSM-5 Development website on November 15, 2012.]

References

1 Levenson JL. The Somatoform Disorders: 6 Characters in Search of an Author. Psychiatr Clin North Am. 2011 Sep;34(3):515-24.

2 Dimsdale JE. Medically Unexplained Symptoms: A Treacherous Foundation for Somatoform Disorders? Psychiatr Clin North Am. 2011 Sep;34(3):511-3.

3 Dimsdale J, Creed F. DSM-V Workgroup on Somatic Symptom Disorders: the proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report. J Psychosom Res 2009;66:473–6.

4 DSM-5 Somatic Symptom Disorders Work Group Disorder Descriptions and Justification of Criteria-Somatic Symptoms documents, published May 4, 2011 for the second DSM-5 stakeholder review.

(Caveat: for background to the SSD Work Group’s rationales only; proposals and criteria as set out in these documents have not been revised to reflect changes to revisions or reissued for the third review.)

    Disorder Descriptions   May 4, 2011

    Rationale/Validity Document   May 4, 2011

© Copyright 2015 Suzy Chapman

Two proposed changes dropped from DSM-5: Media round-up

Two proposed changes dropped from DSM-5: Media round-up

Post #169 Shortlink: http://wp.me/pKrrB-28a

Pharma Blog

Should A Federal Agency Oversee The DSM?

Ed Silverman | May 15, 2012

…Frances proposes that a federal agency ought to assume the job of developing the DSM, although he believes a new organization would be required, one that could be housed in the US Department of Health and Human Services, the Institute of Medicine or the World Health Organization. An equivalent of the FDA is needed to “mind the store,” as he puts it.

This may raise a different set of objections, of course. To what extent, for instance, should a federal agency delve deeply into determining diagnoses and definitions? On the other hand, perhaps this would remove the concerns over self-interest and conflict that have tainted the process. What do you think?

Should a Federal Agency Run The DSM?

Psych Central

An Epidemic of Mental Disorders?

John M. Grohol, PsyD, Founder & Editor-in-Chief | May 15, 2012

Psychiatric Times

COMMENTARY

Is There Really an “Epidemic” of Psychiatric Illness in the US?

Ronald W. Pies, MD | May 1, 2012

Epidemic: (from epidēmos, prevalent : epi-, epi- + dēmos, people) “…an epidemic refers to an excessive occurrence of a disease.”–from Friis & Sellers, Epidemiology for Public Health Practice, 4th ed, 2010

If claims in the non-professional media can be believed, there is a “raging epidemic of mental illness” in the US¹, if not world-wide—and, in one version of this narrative, psychiatric treatment itself is identified as the culprit. There are several formulations of the “epidemic narrative,” depending on which of psychiatry’s critics is writing. In the most radical version, it is psychiatric medication that is fueling the supposed burgeoning of mental illness, particularly depression and schizophrenia.² More subtle variants suggest that there is a “false epidemic” of some psychiatric disorders, driven by dramatically rising rates of “false positive” diagnoses.³…

Time Healthland

Mental Health

DSM 5 Could Mean 40% of College Students Are Alcoholics

Maia Szalavitz | May 14, 2012

Most college binge drinkers and drug users don’t develop lifelong problems. But new mental-health guidelines will label too many of them addicts and alcoholics…

Side Effects at Psychology Today

DSM-5 Is Diagnosed, with a Stinging Rebuke to the APA
The regrettable history of the DSM

Christopher Lane, Ph.D. | May 14, 2013

…Among the fiercest critics quoted is Mark Rapley, a clinical psychologist at the University of East London, who puts it this way: “The APA insists that psychiatry is a science. [But] real sciences do not decide on the existence and nature of the phenomena they are dealing with via a show of hands with a vested interest and pharmaceutical industry sponsorship.” Despite commending the DSM-5 authors for “reconsidering some of their most unfortunate mistakes,” clinical psychologist Peter Kinderman of the University of Liverpool adds that the manual remains, at bottom, a bad and faulty system. “The very minor revisions recently announced do not constitute the wholesale revision that is called for,” he is quoted as saying. “It would be very unfortunate if these minor changes were to be used to suggest that the task force has listened in any meaningful way to critics….”

The New American

Critics Blast Big Psychiatry for Invented and Redefined Mental Illnesses

Alex Newman | May 13, 2012

Allen J Frances lecture

Published on 11 May 2012 by tvochannel

Psychiatrist and author, Allen J. Frances, believes that mental illnesses are being over-diagnosed. In his lecture, Diagnostic Inflation: Does Everyone Have a Mental Illness?, Dr. Frances outlines why he thinks the DSM-V will lead to millions of people being mislabeled with mental disorders. His lecture was part of Mental Health Matters, an initiative of TVO in association with the Centre for Addiction and Mental Health.

Podcast http://bit.ly/KhLuhd

57:36 mins | 19 MB

As part of Mental Health Matters Week, Big Ideas presents a lecture by Allen J Frances, MD, who had chaired the DSM-IV Task Force.

Website http://a2zn.com/?p=3507

News wire

May 6, 2012 University of Toronto

Produced in collaboration with the Center for Addiction and Mental Health

Allen J Frances lecture

Diagnostic inflation. Does everyone have a mental illness?

Big Ideas – May 12 and 13 at 5 pm ET

TVO’s lecture series will present special guest speaker Dr. Allen J. Frances, who will outline why he believes that mental illnesses are being over-diagnosed these days and why he thinks the fifth and latest version of the psychiatrist’s bible, Diagnostic and Statistical Manual of Mental Disorders will lead to millions of people being mislabeled with mental disorders.

The lecture will be recorded May 6 at University of Toronto’s Hart House.

1 Boring Old Man

the dreams of our fathers I…

1 Boring Old Man |  May 12, 2012

University Diaries

“Diagnostic Exuberance”…

Margaret Soltan | May 13, 2012

BMJ News

More psychiatrists attack plans for DSM-5

BMJ 2012; 344 doi: 10.1136/bmj.e3357 (Published 11 May 2012)

Geoff Watts

The authors of the 5th edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5), due to be published in May 2013, have responded to previous criticisms of their text by announcing a further series of changes.1

But far from mollifying their critics, these concessions have served to ignite a further and still more vituperative barrage of dissent.

The list of topics under reconsideration or already subject to change can be found on the DSM-5 website.2 It includes the proposed “attenuated psychosis syndrome,” which is slated for further study, and also major depressive disorder. Here the authors have added a footnote “to …

Access to the full text of this article requires a subscription or payment

Scientific American Blogs

Why Are There No Biological Tests in Psychiatry?

By Ingrid Wickelgren | May 11, 2012 | 2

Part 5 of a 5-part series Allen Frances

New York Times

Op-Ed Contributor

Diagnosing the D.S.M.

Allen Frances | May 11, 2012

“…All mental-health disciplines need representation — not just psychiatrists but also psychologists, counselors, social workers and nurses. The broader consequences of changes should be vetted by epidemiologists, health economists and public-policy and forensic experts. Primary care doctors prescribe the majority of psychotropic medication, often carelessly, and need to contribute to the diagnostic system if they are to use it correctly. Consumers should play an important role in the review process, and field testing should occur in real life settings, not just academic centers.

Psychiatric diagnosis is simply too important to be left exclusively in the hands of psychiatrists. They will always be an essential part of the mix but should no longer be permitted to call all the shots…”

MedPage Today

DSM-5: What’s In, What’s Out

John Gever, Senior Editor, MedPage Today |  May 10, 2012

   …The final drafts are to be completed by August, then they must be approved by a scientific review committee and the task force leadership, and finally by the APA’s governing bodies.

Kupfer said the final version has to be completed by December, when it’s set to go to the printer. Its formal release is planned for the APA’s annual meeting next May in San Francisco.

Here’s a brief overview of the changes you can expect…

WHAT’S OUT
WHAT’S IN (or STILL IN)
WHAT DIDN’T MAKE IT
WHAT TO LOOK FORWARD TO

Reuters 1

Two proposed changes dropped from psychiatric guide

Julie Steenhuysen | Reuters CHICAGO | May 9, 2012

CHICAGO (Reuters) – Two proposed psychiatric diagnoses failed to make the last round of cuts in the laborious process of revising the Diagnostic and Statistical Manual of Mental Disorders — an exhaustive catalog of symptoms used by doctors to diagnose psychiatric illness.

Gone from the latest revision are “attenuated psychosis syndrome,” intended to help identify individuals at risk of full-blown psychosis, and “mixed anxiety depressive disorder”, a blend of anxiety and depression symptoms. Both performed badly on field tests and in public comments gathered by the group in its march toward the May 2013 publication deadline.

Both have been tucked into Section III of the manual — the place reserved for ideas that do not yet have enough evidence to make the cut as a full-blown diagnosis.

What has survived, despite fierce public outcry, is a change in the diagnosis of autism, which eliminates the milder diagnosis of Asperger syndrome in favor of the umbrella diagnosis of autism spectrum disorder.

But that, too, could still be altered before the final manual is published, the group says. The APA opened the final comment period for its fifth diagnostic manual known as DSM-V on May 2, and it will accumulate comments through June 15.

Dr. David Kupfer, who chairs the DSM-5 Task Force, said in a statement that the changes reflect the latest research and input from the public.

Dr. Wayne Goodman, professor and chairman of the department of psychiatry at Mount Sinai Medical Center in New York, said he’s glad the task force is responding to feedback from professionals and the public.

“I think they are trying to listen,” he said.

Goodman agrees with the decisions to drop both of the two disorders in the latest revision.

With the “mixed anxiety and depressive disorder,” he said there was a risk that it would capture a number of people who did not qualify under a diagnosis of depression or anxiety alone.

“It could lead to overdiagnosis,” Goodman said.

He said the “attenuated psychosis syndrome” diagnosis would have been useful for research purposes to help identify those at risk of psychosis, but there was a concern that it might label people who were just a bit different as mentally ill.

“The predictive value is not clear yet,” he said. “I think it’s reasonable not to codify it until we have better definition of its predictive value.”

Goodman, who worked on DSM-4, the last revision of the manual published in 1994, and is working on the Obsessive Compulsive Disorder section of the current revision of DSM-5, said the strength of the process is that it can offer a reliable way for psychiatrists across the country to identify patients with the same sorts of disorders.

The weakness, he said, is that it largely lacks biological evidence — blood tests, imaging tests and the like — that can validate these diagnoses.

“DSM-5 is a refinement of our diagnostic system, but it doesn’t add to our ability to understand the underlying illness,” he said.

Dr. Emil Coccaro, chairman of the Department of Psychiatry and Behavioral Neuroscience at the University of Chicago Medicine, said typically changes in the DSM occur because of new data.

Coccaro, who is contributing to the new section in the DSM-5 on Intermittent Explosive Disorder, said there is no question that many people aren’t convinced that some of the diagnoses need to be changed, or that there need to be new ones added.

“This also happened the last time when they did DSM-4,” he said, but that was nearly 20 years ago.

“You can keep waiting but at certain point you have to fish or cut bait and actually come out with a new edition. That is what is happening now,” he said.

Comments to the manual can be submitted at www.DSM5.org

(Reporting By Julie Steenhuysen)

Reuters 2

Experts unconvinced by changes to psychiatric guide

Kate Kelland | Reuters LONDON | May 10, 2012

(Reuters) – Many psychiatrists believe a new edition of a manual designed to help diagnose mental illness should be shelved for at least a year for further revisions, despite some modifications which eliminated two controversial diagnoses.

The new edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM 5) is due out this month, the first full revision since 1994 of the renowned handbook, which is used worldwide and determines how to interpret symptoms in order to diagnose mental illnesses.

But more than 13,000 health professionals from around the world have already signed an open letter petition (at dsm5-reform.com) calling for DSM 5 to be halted and re-thought.

“Fundamentally, it remains a bad system,” said Peter Kinderman, a professor of clinical psychology at Britain’s Liverpool University.

“The very minor revisions…do not constitute the wholesale revision that is called for,” he said in an emailed comment.

The American Psychiatric Association (APA), which produces the DSM, said on Wednesday it had decided to drop two proposed diagnoses, for “attenuated psychosis syndrome” and “mixed anxiety depressive disorder”.

The former, intended to help identify people at risk of full-blown psychosis, and the latter, which suggested a blend of anxiety and depression, had been criticized as too ill-defined.

With these and other new diagnoses such as “oppositional defiant disorder” and “apathy syndrome”, experts said the draft DSM 5 could define as mentally ill millions of healthy people – ranging from shy or defiant children to grieving relatives, to people with harmless fetishes.

“SIMPLY NOT USABLE”

Robin Murray, a professor of psychiatric research at the Institute of Psychiatry at Kings College London, said it was a great relief to see the changes in the draft, particularly to the attenuated psychosis diagnosis.

“It would have done a lot of harm by diverting doctors into thinking about imagined risk of psychosis (and) it would have led to unnecessary fears among patients that they were about to go mad,” he said in a statement.

But Allen Frances, emeritus professor at Duke University in the United States, said: “This is only a first small step toward desperately needed DSM 5 reform. Numerous dangerous suggestions remain.”

Frances, who chaired a committee overseeing the DSM 4, added that the DSM 5 “is simply not usable” and should be delayed for a year “to allow for independent review, to clean up its obscure writing, and for retesting”.

Diagnosis is always controversial in psychiatry, since it defines how patients will be treated based on a cluster of symptoms, many of which occur in several different types of mental illness.

Some argue that the whole approach needs to be changed to pay more attention to individual circumstances rather than slotting them into predefined categories.

“(The DSM) is wrong in principle, based as it is on redefining a whole range of understandable reactions to life circumstances as ‘illnesses’, which then become a target for toxic medications heavily promoted by the pharmaceutical industry,” said Lucy Johnstone, a consultant clinical psychologist for the Cwm Taf Health Board in Wales.

“The DSM project cannot be justified, in principle or in practice. It must be abandoned so that we can find more humane and effective ways of responding to mental distress.”

Others, however, are pushing more for the manual to be reviewed more thoroughly to allow for more accurate diagnosis and, in theory, more appropriate treatment.

One of the proposed changes that has survived in the draft DSM 5 – despite fierce public outcry – is in autism. The new edition eliminates the milder diagnosis of Asperger syndrome in favor of the umbrella diagnosis of autism spectrum disorder.

(Editing by Myra MacDonald)

New York Times

Psychiatry Manual Drafters Back Down on Diagnoses

Benedict Carey | May 8, 2012

In a rare step, doctors on a panel revising psychiatry’s influential diagnostic manual have backed away from two controversial proposals that would have expanded the number of people identified as having psychotic or depressive disorders.

The doctors dropped two diagnoses that they ultimately concluded were not supported by the evidence: “attenuated psychosis syndrome,” proposed to identify people at risk of developing psychosis, and “mixed anxiety depressive disorder,” a hybrid of the two mood problems.

They also tweaked their proposed definition of depression to allay fears that the normal sadness people experience after the loss of a loved one, a job or a marriage would be mistaken for a mental disorder.

But the panel, appointed by the American Psychiatric Association to complete the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, or D.S.M., did not retreat from another widely criticized proposal, to streamline the definition of autism. Predictions by some experts that the new definition will sharply reduce the number of people given a diagnosis are off base, panel members said, citing evidence from a newly completed study.

Both the study and the newly announced reversals are being debated this week at the psychiatric association’s annual meeting in Philadelphia, where dozens of sessions were devoted to the D.S.M., the standard reference for mental disorders, which drives research, treatment and insurance decisions.

Dr. David J. Kupfer, a professor of psychiatry at the University of Pittsburgh and the chairman of the task force making revisions, said the changes came in response mainly to field trials — real-world studies testing whether newly proposed diagnoses are reliable from one psychiatrist to the next — and also public commentary. “Our intent for disorders that require more evidence is that they be studied further, and that people work with the criteria” and refine them, Dr. Kupfer said…

CBS News

Panel suggests DSM-5 psychiatry manual drops two disorders, keeps new autism definition

Michelle Castillo | May 10, 2012

(CBS News) – A panel of doctors reviewing the much-debated Diagnostic and Statistical Manual of Mental Disorders 5 (DSM-5) have recommended to drop two controversial diagnoses.

The panel announced that attenuated psychosis syndrome — which identifies people at risk of developing psychosis — and mixed anxiety depressive disorder — a diagnosis which combines both anxiety and depression — should not be included in the manual’s upcoming version, the New York Times reported.

Proposed changes to autism definition may mean new diagnoses for people with Asperger’s

However, a controversial definition for autism, which will delete diagnoses for Asperger’s syndrome and pervasive developmental disorder and combine severe cases into the broader definition of autism, will remain…

MedPage Today

Autism Criteria Critics Blasted by DSM-5 Leader

John Gever, Senior Editor | May 08, 2012

PHILADELPHIA — The head of the American Psychiatric Association committee rewriting the diagnostic criteria for autism spectrum disorders took on the panel’s critics here, accusing them of bad science.

Susan Swedo, MD, of the National Institute of Mental Health, said a review released earlier this year by Yale University researchers was seriously flawed. That review triggered a wave of headlines indicating that large numbers of autism spectrum patients could lose their diagnoses and hence access to services…

Nature

Psychosis risk syndrome excluded from DSM-5

Benefits of catching psychosis early are deemed to come at too high a price.

Amy Max | May 9, 2012

A controversial category of mental illness will not be included in the revised fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the American Psychiatric Association (APA) has said. Attenuated psychosis syndrome, also known as psychosis risk syndrome, had been intended mainly for young adults who have heard whispers in their heads, viewed objects as threatening or suffered other subtly psychotic symptoms…

Scientific American Blogs

Trouble at the Heart of Psychiatry’s Revised Rule Book

Ingrid Wickelgren | May 9, 2012

Part 3 in a series

Huffington Post | Allen Frances Blog

Psychiatric Mislabeling Is Bad for Your Mental Health

Allen Frances, MD | May 9, 2012

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