Patient submissions to third and final DSM-5 stakeholder review

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.

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.

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 controversy: Lane on “SAD”, Frances Follows the Money, Spitzer et al on Kappa reliability

DSM-5 controversy round up:

Lane on “SAD”; Frances “Follows the Money”; Spitzer et al on Kappa reliability; A Closer Look at Pending Changes to the Future of Psychiatric Diagnosis June issue The Journal of Nervous and Mental Disease

Post #178 Shortlink: http://wp.me/pKrrB-2em

Side Effects at Psychology Today

From quirky to serious, trends in psychology and psychiatry.

Christopher Lane, Ph.D. | June 11, 2012

Naming an Ailment: The Case of Social Anxiety Disorder”

“Social phobia” vs. “Social anxiety disorder”: What’s in a name?

…“Using data collected from a telephone survey of residents of New York State,” the letter writers continue, “we investigated whether the disorder name affects the perceived need for treatment. Random-digit dialing was used to obtain phone numbers … In total, 806 people participated.”

“Respondents heard a brief vignette describing a person who experiences discomfort in social situations and often avoids social events. These symptoms were labeled as either social phobia or social anxiety disorder, and respondents indicated whether the person should seek mental health treatment.”

The results are dubious to say the least…

Read full commentary

Psychology Today

DSM 5 in Distress | Allen Frances

Follow The Money
APA puts publishing profits above public trust

Allen Frances MD | June 11, 2012

…APA treats DSM-5 like a valuable publishing property, not as a public trust that importantly impacts on people’s lives and public policy. It is excellent at protecting its “intellectual property” with confidentiality agreements and at protecting its trademark and copyright with bullying threats of law suits. But APA has been sadly incompetent and wildly profligate in the day-to-day work of actually producing a safe and scientifically sound DSM-5.

Dr Scully is asking us to believe ten very unbelievable things. My view – if you want to understand why an unreliable and unsafe DSM-5 is being rushed prematurely to market – is to “follow the money…”

Read full commentary at DSM-5 in Distress

Newswire

http://ajp.psychiatryonline.org/article.aspx?articleid=1109031

The American Journal of Psychiatry, VOL. 169, No. 5

Letters to the Editor | May 01, 2012

Standards for DSM-5 Reliability

Robert L. Spitzer, M.D.; Janet B.W. Williams, Ph.D.; Jean Endicott, Ph.D.
Princeton, N.J. New York City

Am J Psychiatry 2012;169:537-537. 10.1176/appi.ajp.2012.12010083

TO THE EDITOR: In the January issue of the Journal, Helena Chmura Kraemer, Ph.D., and colleagues (1) ask, in anticipation of the results of the DSM-5 field trial reliability study, how much reliability is reasonable to expect. They argue that standards for interpreting kappa reliability, which have been widely accepted by psychiatric researchers, are unrealistically high…

A Closer Look at Pending Changes to the Future of Psychiatric Diagnosis

Released: 6/7/2012 9:00 AM EDT
Source: Wolters Kluwer Health: Lippincott Williams & Wilkins

Articles Have Potential to Affect Final DSM-5 Standards as Public comment Period Ends

Newswise — New York, NY (June 7, 2012) – The June issue of The Journal of Nervous and Mental Disease (JNMD) features a special section focused on the impending release of the revised Diagnostic and Statistical Manual of Mental Disorders (DSM-5), an update to psychiatric diagnosis standards. JNMD is published by Lippincott Williams & Wilkins, part of Wolters Kluwer Health.

The Journal of Nervous and Mental Disease Editor-in-Chief John A. Talbott, MD, (a past APA president and DSM-III collaborator) comments in his editorial, “The timing of this special section on DSM-5, therefore, is particularly auspicious because it provides the potential for these articles to affect the final DSM-5 decisions.” The DSM-5 manual, currently scheduled for publication in May 2013, is going through its final public comment period through June 15, 2012.

Many articles within the section present criticisms of DSM-5 proposals. Specifically, several authors worry that the new DSM-5 standards may open up more opportunities for false-positives – a doctor diagnosing a condition when it is not present, or providing medication when it is not needed.

• “Diagnostic Inflation: Causes and Suggested Cure” by Batstra and Frances displays the authors’ concern that the proposed changes to DSM-5 will result in diagnostic inflation and inappropriate use of medication. They suggest “stepped diagnosis,” which includes a watch-and-wait period before beginning medication, to combat false-positives.

• In “Recurrence of Bereavement-Related Depression: Evidence for the Validity of the DSM-IV Bereavement Exclusion From the Epidemiological Catchment Area Study,” Wakefield and Schmitz contend that the DSM-5 proposal to remove the bereavement exclusion from the definition of a major depressive episode would cause those who are experiencing normal grief after the death of a loved one to be mislabeled as clinically depressed.

Other articles respond to DSM-5 proposals to include new disorders and diagnostic constructs. For example, DSM-5 proposes to reclassify pathological gambling as a behavioral addiction, which may pave the way for other excessive behaviors to be included in this construct in the future.

• Mihordin takes a look at the potential consequences of this change in his article, “Behavioral Addiction V Quo Vadis?” in which he presents hypothetical criteria for the diagnosis of pathological model railroading disorder.

• Good and Burstein respond to the DSM-5 proposal to include a hebephilic subtype to the diagnosis of pedophilia in “Hebephilia and the Construction of a Fictitious Diagnosis”. Additionally, Wakefield examines two DSM-5 proposals on classifying pathological forms of grief as mental disorders in “Should Prolonged Grief Be Reclassified as a Mental Disorder in DSM-5? Reconsidering the Empirical and Conceptual Arguments for Complicated Grief Disorder.”

Included in the special section, “Psychotropic Marketing Practices and Problems: Implication for DSM-5” by Raven and Perry looks at how certain aspects of DSM-5 could be used by the pharmaceutical industry as marketing tools, especially with a wider customer base resulting from false-positive patients. In “A Critique of the DSM-5 Field Trials,” Jones examines problems that may have compromised the usefulness of the DSM-5 field trials.

It is important to note that the articles in the special section of JNMD were written at various points since February 2010 based on the criteria sets posted on the DSM-5 website. Many of these criteria sets have been updated since their initial posting. “Thus, the critiques of certain proposals contained in these articles may no longer be fully relevant to what is actually being proposed for DSM-5,” Dr. Talbott states in his editorial. Visit the DSM-5 website at http://www.dsm5.org/  for the most accurate information on what is being considered for inclusion in DSM-5.

# # #

About The Journal of Nervous and Mental Disease
Founded in 1874, The Journal of Nervous and Mental Disease is the world’s oldest, continuously published independent scientific monthly in the field of human behavior. Articles cover theory, etiology, therapy, social impact of illness, and research methods

Allen Frances: “Follow the Money”

Allen Frances writing on Huffington Post: “Follow the Money”

Post #177 Shortlink: http://wp.me/pKrrB-2e3

Allen Frances, who had oversight of the development of DSM-IV, responds to DSM-5 Inaccuracies: Setting the Record Straight by James H Skully, CEO and Medical Director to the American Psychiatric Association.

Huffington Post Blogs | Allen Frances

Follow the Money

Allen Frances MD | June 9, 2012

…The APA budget depends heavily on the huge publishing profits generated by its DSM monopoly. APA needs the money badly. It is losing paying members; other sources of funding are also on a downward trend; and its budget projections require a big May 2013 injection of DSM-5 cash…

…APA treats DSM-5 like a valuable publishing property, not as a public trust that importantly impacts on people’s lives and public policy. It is excellent at protecting its “intellectual property” with confidentiality agreements and at protecting its trademark and copyright with bullying threats of law suits. But APA has been sadly incompetent and wildly profligate in the day-to-day work of actually producing a safe and scientifically sound DSM-5.

Dr Scully is asking us to believe ten very unbelievable things. My view – if you want to understand why an unreliable and unsafe DSM-5 is being rushed prematurely to market – is to “follow the money…”

Read full commentary on Huff Po

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