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

Submissions

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.

Sincerely,

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

Fax: 775.348.2350
www.wpinstitute.org  

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!

News release: APA Closes Public Comment Period for Draft Diagnostic Criteria for DSM-5

News release: APA Closes Public Comment Period for Draft Diagnostic Criteria for DSM-5

Post #40 Shortlink: http://wp.me/pKrrB-Gl

News Release

http://tinyurl.com/DSM5reviewcloses

or open PDF here:  APA Closes Public Comment Period for DSM-5 Release No. 10-31

For Information Contact:

Eve Herold, 703-907-8640

press@psych.org  Release No. 10-31

Jaime Valora, 703-907-8562

jvalora@psych.org

EMBARGOED For Release Until: April 20, 2010, 12:01 AM EDT

APA Closes Public Comment Period for Draft Diagnostic Criteria for DSM-5

DSM-5 Work Groups to Review Comments

ARLINGTON, Va. (April 20, 2010) -The American Psychiatric Association received 6,400 comments on a draft of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders during a 2½ month public comment period, which ends today.

“This period of public review and comment of diagnostic criteria is unprecedented in both the field of psychiatry and in medicine,” said Alan F. Schatzberg, M.D., president of the American Psychiatric Association. “It demonstrates the APA’s commitment to an inclusive and transparent process of development for DSM-5.”

The criteria have been available for comment since they were published online on Feb. 10. The draft criteria will continue to be available for review on the DSM-5 Web site, www.dsm5.org , and updates to the draft will be posted on an ongoing basis. The public will have another opportunity to comment on the criteria and any changes after the first round of field trials.

A number of clinicians, researchers and family and patient advocates participated in the public comment period, contributing more than 6,400 comments on various aspects of DSM-5.

All comments submitted via the Web site were assigned to a topic-specific expert from one of the thirteen DSM-5 work groups for review. In their review, work group members will note submissions that need additional consideration from the work group as a whole. Upon evaluation from the entire work group, draft criteria may be revised.

For example, the Eating Disorders Work Group has proposed additional revisions to criteria for Anorexia Nervosa and Bulimia Nervosa based on comments received.

“The goal of DSM-5 is to create an evidence-based manual that is useful to clinicians and represents the best science available,” said David J. Kupfer, M.D., DSM-5 Task Force chair.

“The comments we received provide the task force and work groups with additional information and perspectives, ensuring that we have fully considered the impact any changes would have on clinical practice and disorder prevalence, as well as other real-world implications of revised criteria.”

Most of the comments that were submitted were diagnosis-specific, while nearly one-fourth were general. Distribution of the comments varied across the 13 work groups.

The work groups with the largest number of submitted comments include:

. Neurodevelopmental Disorders Work Group (23% of comments)

. Anxiety Disorders Work Group (15% of comments)

. Psychosis Disorder Work Group (11% of comments)

. Sexual and Gender Identity Disorders (10% of comments)

Following a review of all submitted comments and possible revisions to the draft criteria, the APA will begin a series of field trials to test some of the proposed diagnostic criteria in clinical settings. The proposed criteria will continue to be reviewed and refined over the next two years.

Final publication of DSM-5 is planned for May 2013

[Ends]

CFS Associazione Italiana submission to DSM-5 public review process

CFS Associazione Italiana submission to DSM-5 public review process

Post #39 Shortlink: http://wp.me/pKrrB-Gg

Submissions

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

Read here: CFS Associazione Italiana / CFS Italian Association

Giada Da Ros
President
CFS Associazione Italiana

http://www.salutemed.it/cfs/

Submission from CFS Italian Association to DSM-5 Task Force – English version

ME Association endorsed submission to DSM-5 draft criteria

ME Association endorsed submission to DSM-5 draft criteria

Post #37 Shortlink: http://wp.me/pKrrB-G9

Submissions

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

ME Association (UK)

Submission compiled by Dr Ellen Goudsmit and endorsed by the MEA:

Due to the paucity of reliable and consistent data, the concept of chronic fatigue syndrome (CFS) should not be included in DSM-5 or a note of caution is required as, at the present time, no scientist can adequately judge whether symptoms are misattributed etc (eg Jason et al, 2005, Lane et al, 2003, McGarry et al 1994, Paul et al 1999). There is more evidence of pathology in subsets and without doing specialist tests, physicians cannot draw firm conclusions.

Any reference to IBS is similarly unhelpful as the symptoms, like CFS, seem to have a multifactorial aetiology and, in the same way, one cannnot assess misattribution, ‘anxiety’ as opposed to valid concern, unless one does specialist tests to judge whether the ‘anxiety’ is justified. Some may have carcinoma of the bowel.

CBT helps some patients, to a degree. The text re CBT goes beyond the evidence. Effect size statistics re CFS tend to be modest (Jason et al 2007, Price et al 2008).

Refs:

Jason, L.A., Corradi, K., Torres-Harding, S., Taylor R.R., & King, C. (2005). Chronic fatigue syndrome: the need for subtypes. Neuropsychology Review, 15, 29-58.

Jason, LA., Torres-Harding, S., Friedberg, F., Corradi, K., Njoku, MG., Donalek, J et al. (2007) Non-pharmacologic interventions for CFS: A randomized trial. Journal of Clinical Psychology in Medical Settings, 14, 275-296.

Lane, Lane, R.J.M., Soteriou, B.A., Zhang, H., & Archard, L.C. (2003). Enterovirus related metabolic myopathy: a  postviral fatigue syndrome. Journal of Neurology, Neurosurgery and Psychiatry, 74, 1382-1386.

McGarry, F., Gow, J., & Behan, P.O. (1994). Enterovirus in the chronic fatigue syndrome. Annals of Internal Medicine, 120, 972-973.

Paul, L., Wood, L., Behan, W.M.H., & Maclaren, W.M. (1999). Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome. European Journal of Neurology, 6, 63-69.

Price, JR., Mitchell, E., Tidy, E., & Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database of Systematic Reviews 2008; Issue 2. Art No.: CD001027. DOI: 10.1002/14651858.CD001027.pub2.

Action for M.E. submission to DSM-5 public review process

Action for M.E. submission to DSM-5 public review process

Post #36 Shortlink: http://wp.me/pKrrB-FK

Submissions

Patient organisations, professionals and advocates submitting comments in the DSM-5 draft proposal review process are invited to provide copies of their submissions for collation on this page: http://wp.me/PKrrB-AQ

Action for M.E.

Statement to the American Psychiatric Association in relation to the possibility of M.E./CFS being classified as a psychiatric disorder (submitted last night):

http://www.afme.org.uk/news.asp?newsid=812

Complex Somatic Symptom Disorder
20 April 2010

Action for M.E.’s statement to the American Psychiatric Association in relation to the possibility of M.E./CFS being classified as a psychiatric disorder:

Action for M.E. would like to thank the American Psychiatric Association’s for the opportunity to comment on the the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5).

We were gravely concerned and alarmed to hear of the possibility of CFS/ME being classified as a psychiatric disorder, based on comments made in their Work Group on somatoform disorders.

As the largest by far CFS/ME charity in the UK, Action for M.E. would stress that CFS/M.E. is a long-term and disabling physical illness. M.E. is classified by the World Health Organisation in ICD 10 G93.3 as a neurological disorder. There is a large and growing body of evidence from scientific research and from clinicians which supports this position.

We oppose any attempt to classify CFS/M.E. as a psychiatric disorder either explicitly or implicitly.

Submission to DSM-5 draft proposals from Invest in ME

Submission to DSM-5 draft proposals from Invest in ME

Post #35 Shortlink: http://wp.me/pKrrB-FE

Submissions

Patient organisations, professionals and advocates submitting comments in the DSM-5 draft proposal review process are invited to provide copies of their submissions for collation on this page: http://wp.me/PKrrB-AQ

Invest in ME submission

The American Psychiatric Association has recently called for comments to be forwarded regarding their draft proposal for DSM-V (Diagnostic and Statistical Manual of Mental Disorders (DSM) is the standard classification of mental disorders used by mental health professionals in the United States and contains a listing of diagnostic criteria for every psychiatric disorder recognized by the U.S. healthcare system).

Included in DSM-V is a section entitled Complex Somatic Symptom Disorders.

Considering that psychiatrists in the UK have caused such harm to people with ME and their families over the past generation Invest in ME decided that input needed to be made to the APA regarding this section.

Below is Invest in ME’s response – submitted on 19th April 2010.

The CSSD criteria are described here –

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:
(1) High level of health-related anxiety.
(2) Normal bodily symptoms are viewed as threatening and harmful
(3) A tendency to assume the worst about their health (catastrophizing).
(4) Belief in the medical seriousness of their symptoms despite evidence to the contrary.
(5) 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 6 months).

The link to the APA web page – entitled DSM-5: The Future of Psychiatric Diagnosis is at –

http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368

Submission – to the American Psychiatric Association on DSM-V

Invest in ME is an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (ME or ME/CFS), as defined by WHO-ICD-10-G93.3 – (also referred to as Chronic Fatigue Syndrome (CFS) – although in this letter we shall use the term ME/CFS).

Even though we are not mental health professionals or represent people with mental health disorders we feel it important to comment on the draft proposal of DSM-V.

This response should be seen against the backdrop of the devastation caused by some psychiatrists in the UK regarding their treatment of people with ME/CFS and their promotion of false perceptions about the disease to the public, healthcare authorities and government.

When a generation of patients have been adversely affected by misinformation promoted by a section of psychiatrists in the UK and when the field of psychiatry has been brought into disrepute by these same psychiatrists then it is of paramount importance that the American Psychiatric Association are aware of the dangers inherent in establishing incorrect categories of disorders which are based on poor science, vested interests or which do not serve the patients for whom they must surely be priority in all healthcare provision.

We are especially concerned about the criteria described in the new category of Complex Somatic Symptom Disorder which seems to lump together many illnesses. It cannot be helpful for clinicians or researchers to have such a variety of patients under one category especially when very little is known of the pathophysiology of these conditions placed in this category.

In the CSSD Criteria B there are terms used which are subjective and not measurable – such as “health concerns” and “catastrophising”.

Based on our experience with the treatment of an organic illness such as ME/CFS our concern is that there is a great danger of mis- or missed diagnoses when looking at this category and its diagnostic criteria.

Not all physical illnesses can be easily determined without extensive investigations and this category may allow clinicians to miss brain tumours, rare cancers and other illnesses which are difficult to diagnose.

The criteria are very vague and allow too much subjectivity.

In fact, ME/CFS could mistakenly be placed in this category if one were to ignore the huge volume of biomedical research and evidence which shows it to be an organic illness and if one were to use only the broad CSSD criteria to diagnose.

Such an action would be a major and costly mistake.

The patients we are concerned with suffer from Myalgic Encephalomyelitis which is a neurological disease but all too often these patients are being treated as if they had a somatoform illness.

Parents of children with ME are restricted in visiting their severely ill children in hospital or worse still the children are taken away from their families as the healthcare professional believes it is the family that is keeping the child ill.

Severely ill grown ups with this disease are denied usual medical care and threatened with sectioning if they are too ill to care for themselves and ask for help.

This not only sets patient against healthcare professional but also is a waste of resources and of lives. In the UK the profession of psychiatry also suffers as psychiatrists are often derided as uncaring, unscientific and unprofessional. The possibility of litigation ensuing against psychiatrists who cause such damage should also not be forgotten.

A broad unspecific category such as the proposed Complex Somatic Symptom Disorder does not help patients who need an honest and clear diagnosis. Any illness lacking a diagnostic test is in danger of being put into this non specific category which helps no one.

We are at least thankful that the APA has not attempted to repeat the major mistake being made by prominent UK psychiatrists in attempting to classify Myalgic Encephalomyelitis in amongst Complex Somatic Symptom Disorders.

Such a course of action would create another source of conflict between patients and the field of psychiatry and lead to unnecessary loss of health, potential loss of life and possible legal actions being taken against those professional organizations and/or individuals who use incorrect guidance for their diagnoses,

Yours Sincerely,

Kathleen McCall

Chairman Invest in ME
Charity Nr 1114035

Invest in ME
PO Box 561
Eastleigh SO50 0GQ
Hampshire
England