DSM-5 SSD submissions 2012

Submissions to the third and final DSM-5 public review (May 2 – June 15 2012)

If you are looking for submissions for the first and second public reviews, you need these pages:

Submissions to the first public review (February 10 – April 20, 2010):http://wp.me/PKrrB-AQ

Submissions to the second public review (May 4 – July 15, 2011): http://wp.me/PKrrB-19a

Organizations, professionals, patients and advocates submitting comments in the third DSM-5 draft proposal review process are invited to provide copies of their submissions for publication on this page. Submissions will be posted in the order they are published or as they come to my attention.

Page 1: International patient organizations

RMCFA (US); Phoenix Rising, US; ME Association of Denmark; National ME/FM Action Network (Canada); Action for M.E. (UK)

Page 2: Medical, allied health and other professional stakeholders

Page 3: Patients and advocates

US patient 2; UK citizen 1; Katy Debelic, Canadian patient; Suzy Chapman, UK advocate; Judith M.L. Day, patient and advocate; Joss, UK patient; Chris Douglas, UK patient; US Patient 1; B Tilley, UK patient; Susanna Agardy, Australian patient; Samuel Wales, patient; Mary Dimmock, US advocate; Lydia Hendry, UK patient; Mary M. Schweitzer, Ph.D., US patient and advocate; Peter Kemp, UK patient and advocate

Page 4: Professional bodies

American Mental Health Counselors Association; British Psychological Society; American Counseling Association; Coalition for DSM-5 Reform (Society for Humanistic Psychology, Division 32 of the American Psychological Association)

Submissions by International patient organizations

Submission from RMCFA (US)


Submission from Phoenix Rising (US)

As a ME/CFS patient support charity we take the position that the current proposals for DSM5 are ripe for misapplication by the general mental health community. Phoenix Rising emphatically endorses the responses by Mary Dimmock and Suzy Chapman to the proposed revision to the J 00 Somatic Symptom Disorder.

This proposal is fatally flawed in its current form and we encourage the voting members to revisit the very basics of this proposal.

Submission by ME Association of Denmark

DSM-5 Task Force, Somatic Symptom Disorders Work Group

Response on the Proposals for Somatic Symptom Disorder

The ME Association of Denmark wishes to strongly advise against the acceptance of the proposed category Somatic Symptom Disorder (SSD) into version 5 of the Diagnostic and Statistical Manual of Mental Disorders (DSM). ME (myalgic encephalomyelitis) is a complex, chronic, multi-system disease that is currently not well known in the medical community and many doctors will not recognize it when a patient presents with it. It is our concern that instead of getting a correct diagnosis of ME, a patient would instead get a diagnosis of SSD. And they would then receive inappropriate and possibly harmful treatment.

We have several cases in Denmark where an incorrect diagnosis of functional somatic syndrome and the inappropriate treatment of exercise have left teenaged patients permanently bedridden. ME patients suffer from a unique and proven form of exercise intolerance called PENE: Post-Exertional Neuroimmune Exhaustion. http://www.meassociation.org.uk/?p=7173

We have countless cases where an incorrect diagnosis and treatment have negatively and permanently impacted the ME patient’s health and quality of life.

ME can be extremely debilitating and usually prevents patients from working, going to school or even caring for themselves. Many patients go years and even decades before they receive a correct diagnosis. Given the circumstances, it is only human to worry about your illness and to try to find out why you are ill. The absolute subjectivity of the criteria for SSD makes it likely that even more ME patients will be misdiagnosed with a psychological disorder if SSD is taken into use. We fail to see how the proposed category would benefit any patient.

We also find it extremely worrisome that SSD can be added to any physical diagnosis and we can only see this as an attempt to create patients for the psychiatric industry.

In Denmark, it is our experience that once a patient has received a psychological diagnosis of this type, they are then blocked from any further examinations and tests. Danish doctors are trained by a program called the TERM model to understand all new symptoms as an expression of the patient’s psychiatric problems. Thus, they are encouraged to ignore symptoms of physical disease. (TERM model page 49) Our concern is that the category of SSD will make it much easier to give a psychiatric diagnosis and that many physical diseases will therefore be ignored.

The idea of science should be to move forward and to objectively elucidate the cause of disease. The creation of the category of Somatic Symptom Disorders would be a big step backwards.

Best regards,

Rebecca Hansen


ME Association, Denmark

Submission by the National ME/FM Action Network (Canada)

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

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

Submission from UK patient organization, Action for M.E.

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.

For submissions by medical, allied health and professionals go to Page 2

For submissions by patients and advocates go to Page 3

For submissions by professional bodies go to Page 4


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