ME Association endorsed submission to DSM-5 draft criteria

April 22, 2010 by

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.

Filed under American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-5 in the media, DSM-V, Functional Somatic Syndrome (FSS), MUS, Somatic Symptom Disorder, Somatoform Disorders

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

April 20, 2010 by

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.

Filed under American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-V, Functional Somatic Syndrome (FSS), ICD-10, Somatic Symptom Disorder, Somatoform Disorders

Submission to DSM-5 draft proposals from Invest in ME

April 19, 2010 by

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

Filed under American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-V, Functional Somatic Syndrome (FSS), MUS, Somatic Symptom Disorder, Somatoform Disorders

Comments on DSM-5 proposals from the Massachusetts CFIDS/ME and FM Association

April 17, 2010 by

Comments on DSM-5 proposals from the Massachusetts CFIDS/ME and FM Association

Post #34 Shortlink: http://wp.me/pKrrB-Ft

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

Massachusetts Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalopathy and Fibromyalgia Association (Mass. CFIDS/ME & FM)

http://www.masscfids.org/

LETTER TO THE DSM-5 COMMITTEE OF THE APA

The Board of Directors of the Massachusetts Chronic Fatigue and Immune Dysfunction Syndrome / Myalgic Encephalopathy and Fibromyalgia Association (Mass. CFIDS/ME &FM) has reviewed your proposed revisions of DSM-IV destined for DSM-5. Our special focus has been on your newly proposed category “Complex Somatic Symptom Disorder”. Our concern is not so much about the fact that you want to simplify terms for somatoform disorders but about the particular criteria cited and the potential misuse of the category.

We share the concern, heard from individuals and organizations around the world, that this new category might be too readily misused to include chronic fatigue syndrome (“CFS”, also now known as ME or myalgic encephalopathy) and fibromyalgia as if they are forms of a psychological disorder. Most simply, they are not now psychologically caused illnesses nor have they ever been so. This concern doesn’t come out of the blue. Here in Massachusetts it is based on two and a half decades of seeing mistaken and harmful misdiagnoses based on totally inappropriate and harmful misconceptions of what CFS and fibromyalgia are and what they are caused by.

Our organization, celebrating our 25th year of existence helping patients with these illnesses, has seen firsthand the terrible toll exacted by the trail of misdiagnoses. Patients are tainted, dismissed, not properly treated, and often referred to equally misinformed mental health clinicians who then compound the damage.

In our view, the key problem is not so much the diagnostic nomenclature as it is the wrong and hugely out-of-date conceptions on the part of psychiatrists and non-psychiatric physicians of the very nature and likely causes of both CFS/ME and FM. While it is true that there may be important psychological disturbances following onset, these are secondary.

Over the past fifteen years, increasing numbers of researchers from around the world have pinpointed the likely biological causes, the complex pathophysiology that follows from the initial infectious or toxic triggers, and the interacting and dysfunctional multiple body systems (immune, central and peripheral nervous systems, endocrine, cellular [mitochondrial], etc) involved. Genetic and genomic factors are being elucidated. Certain viruses have long been implicated. Most recently a retrovirus, XMRV, has been implicated and is actively being studied in several centers. While no widely accepted biomarkers are currently available, many key researchers believe that it will not be long before one or more biomarkers will be found. (For example there are many changes in components of immune system functioning.)

While there is no definitive cure as yet, forms of treatment have been developed over the years that can alleviate many of the symptoms. Here is where mental health clinicians can help; sleep disorders are common, and if there are serious secondary psychological symptoms, certain therapies can help.

Dr. Anthony Komaroff, Professor of Medicine at Harvard Medical School and a long-time researcher in the field has said the following: “there are now over 4,000 published studies that show underlying biomedical abnormalities in patients with this illness. It’s not an illness that people can simply imagine that they have and it’s not a psychological illness. In my view, that debate, which has waged for twenty years, should now be over”. [1] Four years later there is even more evidence for Dr. Komaroff’s assertion.

The bottom line is that CFS and fibromyalgia are not psychological illnesses. It is then essential that the American Psychiatric Association vigorously help educate graduate and resident psychiatrists on what is now known. While the wording and criteria for “Complex Somatic Symptom Disorder” will matter so as to avoid confusing chronic fatigue syndrome and fibromyalgia with a somatoform disorder, it will be new understanding of the biological nature, proper diagnostic techniques, and appropriate treatments of these illnesses that will matter most. We consider these re-education efforts to be a responsibility of the American Psychiatric Association along with researchers and clinicians expert in the fields of chronic fatigue syndrome and fibromyalgia.

Alan Gurwitt, M.D.
President, Massachusetts CFIDS/ME & FM Association
(Retired adult and child psychiatrist, Distinguished Fellow of the American Psychiatric Association) 4/16/10

[1] Professor Anthony Komaroff, Harvard Medical School: Speaking at the USA Government CDC press conference on November 3, 2006

Filed under American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-5 in the media, DSM-V, Functional Somatic Syndrome (FSS), Somatic Symptom Disorder, Somatoform Disorders

Letter to the APA on Complex Somatic Symptom Disorder (CSSD) by Mary Schweitzer

April 13, 2010 by

Letter to the APA on Complex Somatic Symptom Disorder (CSSD) by Mary Schweitzer

Post #33 Shortlink: http://wp.me/p5foE-2RD

Mary Schweitzer

13 April 2010

There are only a few days left to comment on the proposed new category of Complex Somatic Symptom Disorder (CSSD) for the APA’s new DSM-5. To read about the proposed new classification, go to the following website:

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

Instructions for comments are on the bottom of the page. You have to register, but that’s not difficult.

We have only until April 20 to leave a comment.

Many organizations connected to ME and CFS advocacy have sent testimony – all should. This could be very dangerous. To begin with, psychiatric treatment is not going to help the biomedical foundation of the disease, so the misdiagnosis would lead to maltreatment. But there are other concerns as well. If “CFS” was promoted as the psychological illness CSSD, patients would be subject to the restrictions insurance companies place on mental disorders. Most health insurance plans do not cover more than a few doctor’s visits per year for a mental illness, if they cover any at all; most disability insurance plans only cover mental illnesses for 3-5 years, if they cover them at all. This is, of course, a great injustice to those with mental illnesses. But that injustice would not be improved by adding patients with “CSSD” to the mix.

My own comments can be found here:

http://slightlyalive.blogspot.com/2010/04/my-letter-to-apa-on-cssd.html

Mary Schweitzer

Filed under American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-V, Functional Somatic Syndrome (FSS), MUS, Somatic Symptom Disorder, Somatoform Disorders

CFIDS Association of America: Submission for DSM-5 public review process

April 9, 2010 by

CFIDS Association of America: Submission for DSM-5 public review process

Post #31 Shortlink: http://wp.me/pKrrB-EP

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

The CFIDS Association of America

Working to make CFS widely understood, diagnosable, curable and preventable

The Diagnostic and Statistical Manual for Mental Disorders (DSM) is being revised by the American Psychiatric Association for release in 2013. Creation of a new category called “Complex Somatic Symptom Disorder” has generated concern and the CFIDS Association submitted its statement on April 1.

The APA will accept public comments until April 20 2010, at: http://www.dsm5.org/Pages/Default.aspx

Open PDF here on the CFIDS site or here on Dx Revision Watch: CFIDS DSM-5 Statement

The CFIDS Association of America

The CFIDS Association of America

April 1, 2010

DSM-5 Task Force

American Psychiatric Association
1000 Wilson Boulevard
Suite 1825
Arlington, VA 22209

Members of the DSM-5 Task Force,

In response to an open request for input on proposed changes to the fifth revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM), the CFIDS Association of America submits the following statement and urgent recommendation.

The CFIDS Association strongly questions the utility of the proposed rubric of complex somatic symptom disorder (CSSD). According to the DSM-5 website

(http://www.dsm5.org/Documents/Somatic/APA%20Somatic%20Symptom%20Disorders%20description%20January29%202010.pdf, accessed March 28, 2010):

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 six months).

The creation of CSSD appears to violate the charges to DSM-5 Work Groups to clarify boundaries between mental disorders, other disorders and normal psychological functioning

(http://www.dsm5.org/about/Pages/faq.aspx, accessed March 28, 2010). This is especially true with regard to patients coping with conditions characterized by unexplained medical symptoms, or individuals with medical conditions that presently lack a mature clinical testing regimen that provides the evidence required to substantiate the medical seriousness of their symptoms. For instance, all of the case definitions for CFS published since 1988 have required that in order to be classified/diagnosed as CFS, symptoms must produce substantial impact on the patient’s ability to engage in previous levels of occupational, educational, personal, social or leisure activity. Yet, all of the case definitions rely on patient report as evidence of the disabling nature of symptoms, rather than results of specific medical tests. So by definition, CFS patients will meet the CSSD criteria A and C for somatic symptoms and chronicity, and by virtue of the lack of widely available objective clinical tests sensitive and specific to its characteristic symptoms, CFS patients may also meet criterion B-4.

As drafted, the criteria for CSSD establish a “Catch-22” paradox in which six months or more of a single or multiple somatic symptoms – surely a distressing situation for a previously active individual – is classified as a mental disorder if the individual becomes “excessively” concerned about his or her health. Without establishing what “normal” behavior in response to the sustained loss of physical health and function would be and in the absence of an objective measure of what would constitute excessiveness, the creation of this category poses almost certain risk to patients without providing any offsetting improvement in diagnostic clarity or targeted treatment.

To provide another common example, back pain that is debilitating and severe, with negative MRIs, is still debilitating and severe back pain. A patient in this situation might be concerned about this back pain, might view it as detrimental to his quality of life and livelihood, and might direct time and resources to seeking care from multiple specialists (e.g., neurology, rheumatology, orthopedics, rehabilitation) to relieve it. Each of these specialists is likely to recommend slightly different therapies, compounding the patient’s focus on alternative explanations for and long-term impact of decreased function and diminished health. Such a patient could be diagnosed with CSSD, yet no empiric evidence has been provided by the Somatic Symptoms Disorders Work Group that applying the label of CSSD will facilitate communication with the patient, add clinical value to the patient’s experience, or improve the care any of these various specialists might provide.

The Somatic Symptoms Disorder Work Group states that patients fitting these criteria are generally encountered in general medical settings, rather than mental health settings

(http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368, accessed March 28, 2010), further limiting the usefulness of this classification in a manual written primarily for the benefit of mental health professionals.

The Somatic Symptoms Disorders Work Group conveys considerable uncertainty about the impact of this new label, in spite of the charge to all DSM-5 work groups to demonstrate the strength of research for the recommendations on as many evidence levels as possible. The Somatic Symptoms Disorders Work Group states:

“It is unclear how these changes would affect the base rate of disorders now recognized as somatoform disorders. One might conclude that the rate of diagnosis of CSSD would fall, particularly if some disorders previously diagnosed as somatoform were now diagnosed elsewhere (such as adjustment disorder). On the other hand, there are also considerable data to suggest that physicians actively avoid using the older diagnoses because they find them confusing or pejorative. So, with the CSSD classification, there may be an increase in diagnosis.”

(http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368, accessed March 28, 2010)

The proposed DSM-5 revision correctly does not identify chronic fatigue syndrome (CFS) as a condition within the domain of mental disorders and the DSM. However, past discussions of the Somatic Symptoms Disorder Work Group have included such physiological disorders as chronic fatigue syndrome, irritable bowel syndrome and fibromyalgia

(http://www.dsm5.org/Research/Pages/SomaticPresentationsofMentalDisorders%28September6-8,2006%29.aspx)

as “somatic presentations of mental disorders.” None of the research and/or clinical criteria for chronic fatigue syndrome published since 1988 have established CFS as a mental disorder and a continuously growing body of literature demonstrates CFS to be a physiological disorder marked by abnormalities in the central and autonomic nervous systems, the immune system and the endocrine system. The role of infectious agents in the onset and/or persistence of CFS has received renewed attention since the DSM-5 revision process began in 1999. Most recently, the October 2009 report of evidence of a human retrovirus, xenotropic murine leukemia-related retrovirus (XMRV), in CFS patients in Science (Lombardi, 2009) has generated new investigations into this and other infectious agents in CFS.

The conceptual framework for CFS detailed in the “Clinical Working Case Definition, Diagnostic and Treatment Protocols” (Carruthers, 2003) serves as a useful tool for professionals to establish a diagnosis of CFS, address comorbidities that may complicate the clinical presentation and distinguish CFS from conditions with overlapping symptomotology. Research on CFS continues to explore and document important biomarkers. Lack of known causation does not make CFS – or the CFS patient’s illness experience – psychopathological any more than multiple sclerosis, diabetes, or other chronic illnesses with objective diagnostic measures, would be so considered.

For the reasons stated above and the general failure of the proposed creation of the CSSD to satisfy the stated objectives of the DSM-5 without risking increased harm to patients through confusion with other conditions or attaching further stigma, the CFIDS Association strongly urges the DSM-5 Task Force to abandon the proposed creation of CSSD.

Sincerely,

K. Kimberly McCleary

President & CEO

The CFIDS Association of America

Filed under American Psychiatric Association (APA), CFIDS Association, Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-V, Functional Somatic Syndrome (FSS), MUS, Somatic Symptom Disorder, Somatoform Disorders

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