Whittemore Peterson Institute submission to DSM-5 draft proposals

Whittemore Peterson Institute submission to DSM-5 draft proposals

Post #41 Shortlink: http://wp.me/pKrrB-Gv


Patient organisations, professionals and advocates submissions are being collated on this dedicated Dx Revision Watch page: http://wp.me/PKrrB-AQ

If you would like your submission added please get in touch via the Contact form

Open Whittemore Peterson Institute response here in PDF format: WPI DSM-5 statement

or here: http://www.wpinstitute.org/news/docs/DSM-5WPIaw2.pdf

April 16, 2010

DSM-5 Task Force
American Psychiatric Association
1000 Wilson Boulevard Suite 1825
Arlington, VA 22209

Members of the DSM-5 Task Force:

The Whittemore Peterson Institute would like to address the potential revision of the American Psychiatric Association’s (APA)’s Diagnostic and Statistical Manual for Mental Disorders (DSM-5). The APA’s proposed changes would combine several existing somatic categories into one larger category, Complex Somatic Symptom Disorder, adding language that closely resembles the CDC’s criteria for Chronic Fatigue Syndrome with additional sickness related behaviors that are often evidenced by those who are ill with a disease when it is poorly understood and characterized symptomatically.

The following language has been proposed:

To meet criteria for CSSD, criteria A, B, and C are necessary.

A. Somatic symptoms:

Multiple somatic symptoms that are distressing or one severe symptom

B. Misattributions, excessive concern or preoccupation with symptoms and illness: At least two of the following are required to meet this criterion:

High level of health-related anxiety.

Normal bodily symptoms are viewed as threatening and harmful

A tendency to assume the worst about their health (Catastrophizing)

Belief in the medical seriousness of their symptoms despite evidence to the contrary.

Health concerns assume a central role in their lives

C. Chronicity: Although any one symptom may not be continuously present, the state of being symptomatic is chronic and persistent (at least six months).

Recent findings by researchers at the Whittemore Peterson Institute, the Cleveland Clinic and the National Cancer Institute have found a link between those who have been previously diagnosed with Chronic Fatigue Syndrome, (ME/CFS) and a new human retrovirus, XMRV. Yet ME/CFS is currently diagnosed symptomatically and requires the patient experience 6 months of severe fatigue. This disease is chronic and often causes a great deal of anxiety for those who suffer from its debilitating symptoms. Therefore, an individual suffering from ME/CFS could be erroneously classified within the new DSM-5 category as a somatic disorder when in fact they clearly suffer from a chronic infectious disease process, evidenced by many physical abnormalities. (Low grade fever, sore throat, severe headache, cognitive dysfunction, and enlarged lymph nodes, and painful joints and muscles).

The new language also adds undue concern about one’s health as criteria for establishing the diagnosis of complex somatic disorder. This is an immeasurable description of behavior that suggests that if one is suffering from an unknown illness and expresses deep concern or seeks answers from multiple sources (a potentially perfectly natural response to such a circumstance) that one could then be classified as having a somatic disorder. Yet, newly recognized diseases require time to develop the appropriate conformational laboratory tests. During that period of time, does it not remain the responsibility of physicians to recognize the patient’s illness and reassure the patient that they will do all they can to alleviate their suffering?

A person who is afflicted with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is often incapable of taking care of their own most basic needs. The swiftness with which one is incapacitated without relief often results in accompanying depression and anxiety. If this patient is advised not to believe their own symptoms of illness they may become further traumatized by the doctors whose sworn duty is to “first do no harm”.

The Whittemore Peterson Institute is deeply concerned that there will be future complex biological diseases of unknown origin, which could too easily be ignored as the result of the diagnosis of “complex somatic disorders”. This would result in serious consequences for those patients who continue to decline in health without appropriate medical interventions.

The term CSSD may also serve as a diagnosis to be used by physicians who currently lack the sophisticated diagnostic tools to describe a new and emerging illness, causing serious harm to those who are ill. Two such recent examples of diseases once categorized as somatic illnesses are multiple sclerosis which was originally called, “hysterical women’s disease” and gastrointestinal ulcers. Only after these diseases were pursued by those who believed in their physical causes with subsequent biological research, were medically effective treatments made available. Thus creating a somatic diagnosis, when there is in fact a physical illness, would relegate a population of patients to many more years of suffering, while basic biological research funding is denied.

For these reasons, the WPI requests that the APA thoughtfully examine the purpose and possible unintended consequences for the encompassing somatic category of illness, Complex Somatic Disorder, and emphatically requests that the DSM-5 task force reject CSSD, as a medical or psychiatric diagnosis.


Annette Whittemore
Founder and CEO
Whittemore Peterson Institute
6600 North Wingfield Parkway
Sparks Nevada 89436
Phone: 775.348.2335

Fax: 775.348.2350

On the subject of the use of the word “somatic”, Angela Kennedy published this note, in June 2009:

I’ve noticed for some time that various people have been using the term ‘somatic’ as if it signified a ‘psychosomatic’ or ‘psychogenic’ condition.

This is incorrect. The OED definition of ‘somatic’ is “of or relating to the body, especially as distinct from the mind” (my italics). The word comes from the Greek ‘soma’ meaning ‘body’.

Even when proponents of ‘psychogenic’ explanations (it’s in your mind, you’re imagining it, misinterpreting it, faking it, caused it by your own beliefs etc. etc. etc.) use the term ‘somatic illness’ they actually do mean an illness of the body. They may then claim this somatic (or bodily illness) is caused by psychological dysfunction, but the word ‘somatic’ does not mean “illness caused by psychological dysfunction”. It merely means illness of a body, or a bodily illness.

It is important that this word is used correctly, especially when people write to the media, government, the medical establishment etc. Otherwise we are in danger of seeing apparent objections published, from advocates, to saying ME/CFS is a bodily illness, purely because someone has used the word ‘somatic’ incorrectly!


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