Open Letter and Petition to DSM-5 Task Force by Society for Humanistic Psychology (Division 32 of the American Psychological Association)

October 23, 2011 by

Open Letter and Petition to DSM-5 Task Force by Society for Humanistic Psychology (Division 32 of the American Psychological Association)

Post #107 Shortlink: http://wp.me/pKrrB-1jI

Update @ January 11, 2012: The third and final draft of proposals for changes to DSM-IV categories and criteria is delayed because field trials and evaluations are running behind schedule and extended to March. The final draft is now expected to be released for public review and comment, “no later than May 2012”, according to DSM-5 Task Force Vice-chair, Darrel Regier, MD [1].

Third review of DSM-5 draft proposals on the horizon

This time last year, folk were mailing me saying – I don’t know why you bother continuing to monitor DSM-5 and ICD-11, XMRV is going to render the DSM-5 proposals meaningless.

Well that was then, and this is now. And in a couple of months’ time we’ll be anticipating the third and final public review and feedback on the APA’s draft proposals for changes to categories and criteria for the revision of DSM-IV.

During the first stakeholder feedback exercise, over 8,600 comments rolled in; during the second comment period (which was extended by an additional four weeks), the Task Force and work groups received over 2000 submissions.

According to the current DSM-5 Timeline:

“September-November 2011: Work groups will be provided with results from both field trials and will update their draft criteria as needed. Field trial results and revised proposals will be reviewed at the November Task Force meeting.

“January-February 2012: Revised draft diagnostic criteria will be posted on http://www.dsm5.org and open to a third public feedback period for two months. Feedback will be shared directly with work group members, and further edits to proposals will be made as needed.” [1]

According to the DSM-5 Development home page:

“…Following analysis of field trial results, we will revise the proposed criteria as needed and, after appropriate review and approval, we will post these changes on this Web site. At that time, we will again open the site to a third round of comments from visitors, which will be systematically reviewed by each of the work groups for consideration of additional changes. Thus, the current commenting period is not the final opportunity for you to submit feedback, and subsequent revisions to DSM-5 proposals will be jointly informed by field trial findings as well as public commentary…” [2]

Assuming the APA’s schedule remains on target, US and international patient organizations and advocates need to start preparing well in advance of the New Year for how best to engage our own medical and allied professionals in this process and encourage their input.

As soon as DSM-5 Draft 3 is posted on the DSM-5 Development site, I shall put out alerts on my websites, via Co-Cure and on other platforms and I shall be contacting UK patient organizations, as I have done for the previous two public review exercises.

But I hope that other advocates and groups, in the US and internationally, will work to take this forward and ensure that as many international patient organizations, ME and CFS clinicians and researchers, like those who collaborated on the new ME International Consensus Criteria, allied health professionals, medical lawyers, social workers and other end uses of the DSM are made aware of the proposals of the “Somatic Symptom Disorders” Work Group and the implications for ME, CFS, FM, IBS, CI, CS and GWS patient groups, and encouraged to submit comments as professional stakeholders.

 

Open Letter and Petition to DSM-5 Task Force

Today I was alerted to an Open Letter and Petition sponsored by the Society for Humanistic Psychology, Division 32 of the American Psychological Association, in alliance with the Society for Community Research and Action: Division of Community Psychology (Division 27 of APA) and the Society for Group Psychology and Psychotherapy (Division 49 of APA) [3]. (No press release, but I’ll update if one is issued.)

These American Psychological Association Divisions are inviting mental health professionals and mental health organizations to sign up in support of an open letter to the American Psychiatric Association’s DSM-5 Task Force.

Their response to DSM-5 structure and proposals may be of interest to psychiatrists and psychologists affiliated to, or on the boards of our own ME and CFS patient organizations.

The Open Letter to the DSM-5 Task Force can be read here and a copy is appended:

http://www.ipetitions.com/petition/dsm5/

Under the subheading “New Emphasis on Medico-Physiological Theory”, the Open Letter sponsors comment on some aspects of the DSM-5 proposals for the “Somatic Symptom Disorders” categories. The Open Letter also supports concerns set out within the formal response to DSM-5 draft proposals submitted by the British Psychological Society, earlier this year, and more recent concerns published by the American Counseling Association.

A couple of points: both the American Psychological Association, three of whose Divisions are sponsors of this Open Letter, and the American Psychiatric Association use the acronym “APA”. It is the American Psychiatric Association’s DSM-5 Task Force that is developing the DSM-5.

Secondly, although the first release of the DSM-5 draft proposals did have the diagnosis “Factitious Disorder” placed under “Somatic Symptom Disorders (SSDs)”, the most recent (May 2011) DSM-5 draft proposes placing “Factitious Disorder” under the diagnostic chapter “Other Disorders”, not within the SSDs, as the Open Letter, below, states [4], [5].

Suzy Chapman

[1] DSM-5 Development Timeline: http://www.dsm5.org/about/Pages/Timeline.aspx

[2] DSM Development website: http://www.dsm5.org/Pages/Default.aspx

[3] Society for Humanistic Psychology: http://www.apadivisions.org/division-32/index.aspx

[4] DSM-5 Draft Proposals, Somatic Symptom Disorders: http://www.dsm5.org/proposedrevision/Pages/SomaticSymptomDisorders.aspx

[5] DSM-5 Draft Proposals, Other Disorders: http://www.dsm5.org/proposedrevision/Pages/OtherDisorders.aspx

The Open Letter and Petition can be read here: http://www.ipetitions.com/petition/dsm5/

There’s also a copy on the blog of  Society for Humanistic Psychology

Sponsor

Society for Humanistic Psychology, Division 32 of the American Psychological Association, in alliance with Society for Community Research and Action: Division of Community Psychology (Division 27 of APA) and Society for Group Psychology and Psychotherapy (Division 49 of APA). We invite mental health professionals and mental health organizations to sign on in support of this petition to the DSM5 Task Force of the American Psychiatric Association

To the DSM-5 Task Force and the American Psychiatric Association:

As you are aware, the DSM is a central component of the research, education, and practice of most licensed psychologists in the United States. Psychologists are not only consumers and utilizers of the manual, but we are also producers of seminal research on DSM-defined disorder categories and their empirical correlates. Practicing psychologists in both private and public service utilize the DSM to conceptualize, communicate, and support their clinical work.

For these reasons, we believe that the development and revision of DSM diagnoses should include the contribution of psychologists, not only as select individuals on a committee, but as a professional community. We have therefore decided to offer the below response to DSM-5 development. This document was composed in recognition of, and with sensitivity to, the longstanding and congenial relationship between American psychologists and our psychiatrist colleagues.

Overview

Though we admire various efforts of the DSM-5 Task Force, especially efforts to update the manual according to new empirical research, we have substantial reservations about a number of the proposed changes that are presented on www.dsm5.org. As we will detail below, we are concerned about the lowering of diagnostic thresholds for multiple disorder categories, about the introduction of disorders that may lead to inappropriate medical treatment of vulnerable populations, and about specific proposals that appear to lack empirical grounding. In addition, we question proposed changes to the definition(s) of mental disorder that deemphasize sociocultural variation while placing more emphasis on biological theory. In light of the growing empirical evidence that neurobiology does not fully account for the emergence of mental distress, as well as new longitudinal studies revealing long-term hazards of standard neurobiological (psychotropic) treatment, we believe that these changes pose substantial risks to patients/clients, practitioners, and the mental health professions in general.

Given the changes currently taking place in the profession and science of psychiatry, as well as the developing empirical landscape from which psychiatric knowledge is drawn, we believe that it is important to make our opinions known at this particular historical moment. As stated at the conclusion of this letter, we believe that it is time for psychiatry and psychology collaboratively to explore the possibility of developing an alternative approach to the conceptualization of emotional distress. We believe that the risks posed by DSM-5, as outlined below, only highlight the need for a descriptive and empirical approach that is unencumbered by previous deductive and theoretical models.

In more detail, our response to DSM-5 is as follows:

Advances Made by the DSM-5 Task Force

We applaud certain efforts of the DSM-5 Task Force, most notably efforts to resolve the widening gap between the current manual and the growing body of scientific knowledge on psychological distress. In particular, we appreciate the efforts of the Task Force to address limitations to the validity of the current categorical system, including the high rates of comorbidity and Not Otherwise Specified (NOS) diagnoses, as well as the taxonomic failure to establish ‘zones of rarity’ between purported disorder entities (Kendell & Jablensky, 2003). We agree with the APA/DSM-5 Task Force statement that, from a systemic perspective,

The DSM-III categorical diagnoses with operational criteria were a major advance for our field, but they are now holding us back because the system has not kept up with current thinking. Clinicians complain that the current DSM-IV system poorly reflects the clinical realities of their patients. Researchers are skeptical that the existing DSM categories represent a valid basis for scientific investigations, and accumulating evidence supports this skepticism. (Schatzberg, Scully, Kupfer, & Regier, 2009)

As researchers and clinicians, we appreciate the attempt to address these problems. However, we have serious reservations about the proposed means for doing so. Again, we are concerned about the potential consequences of the new manual for patients and consumers; for psychiatrists, psychologists, and other practitioners; and for forensics, health insurance practice, and public policy. Our specific reservations are as follows:

Lowering of Diagnostic Thresholds

The proposal to lower diagnostic thresholds is scientifically premature and holds numerous risks. Diagnostic sensitivity is particularly important given the established limitations and side-effects of popular antipsychotic medications. Increasing the number of people who qualify for a diagnosis may lead to excessive medicalization and stigmatization of transitive, even normative distress. As suggested by the Chair of DSM-IV Task Force Allen Frances (2010), among others, the lowering of diagnostic thresholds poses the epidemiological risk of triggering false-positive epidemics.

We are particularly concerned about:

• “Attenuated Psychosis Syndrome,” which describes experiences common in the general population, and which was developed from a “risk” concept with strikingly low predictive validity for conversion to full psychosis.

• The proposed removal of Major Depressive Disorder’s bereavement exclusion, which currently prevents the pathologization of grief, a normal life process.

• The reduction in the number of criteria necessary for the diagnosis of Attention Deficit Disorder, a diagnosis that is already subject to epidemiological inflation.

• The reduction in symptomatic duration and the number of necessary criteria for the diagnosis of Generalized Anxiety Disorder.

Though we also have faith in the perspicacity of clinicians, we believe that expertise in clinical decision-making is not ubiquitous amongst practitioners and, more importantly, cannot prevent epidemiological trends that arise from societal and institutional processes. We believe that the protection of society, including the prevention of false epidemics, should be prioritized above nomenclatural exploration.

Vulnerable Populations

We are also gravely concerned about the introduction of disorder categories that risk misuse in particularly vulnerable populations. For example, Mild Neurocognitive Disorder might be diagnosed in elderly with expected cognitive decline, especially in memory functions. Additionally, children and adolescents will be particularly susceptible to receiving a diagnosis of Disruptive Mood Dysregulation Disorder or Attenuated Psychosis Syndrome. Neither of these newly proposed disorders have a solid basis in the clinical research literature, and both may result in treatment with neuroleptics, which, as growing evidence suggests, have particularly dangerous side-effects (see below)—as well as a history of inappropriate prescriptions to vulnerable populations, such as children and the elderly

Sociocultural Variation

The DSM-5 has proposed to change the Definition of a Mental Disorder such that DSM-IV’s Feature E: “Neither deviant behavior (e.g., political, religious, or sexual) nor conflicts that are primarily between the individual and society are mental disorders unless the deviance or conflict is a symptom of a dysfunction in the individual,” will instead read “[A mental disorder is a behavioral or psychological syndrome or pattern] [t]hat is not primarily a result of social deviance or conflicts with society.” The latter version fails to explicitly state that deviant behavior and primary conflicts between the individual and society are not mental disorders. Instead, the new proposal focuses on whether mental disorder is a “result” of deviance/social conflicts. Taken literally, DSM-5’s version suggests that mental disorder may be the result of these factors so long as they are not “primarily” the cause. In other words, this change will require the clinician to draw on subjective etiological theory to make a judgment about the cause of presenting problems. It will further require the clinician to make a hierarchical decision about the primacy of these causal factors, which will then (partially) determine whether mental disorder is said to be present. Given lack of consensus as to the “primary” causes of mental distress, this proposed change may result in the labeling of sociopolitical deviance as mental disorder.

Revisions to Existing Disorder Groupings

Several new proposals with little empirical basis also warrant hesitation:

• As mentioned above, Attenuated Psychosis Syndrome and Disruptive Mood Dysregulation Disorder (DMDD) have questionable diagnostic validity, and the research on these purported disorders is relatively recent and sparse.

• The proposed overhaul of the Personality Disorders is perplexing. It appears to be a complex and idiosyncratic combined categorical-dimensional system that is only loosely based on extant scientific research. It is particularly concerning that a member of the Personality Disorders Workgroup has publicly described the proposals as “a disappointing and confusing mixture of innovation and preservation of the status quo that is inconsistent, lacks coherence, is impractical, and, in places, is incompatible with empirical facts” (Livesley, 2010), and that, similarly, Chair of DSM-III Task Force Robert Spitzer has stated that, of all of the problematic proposals, “Probably the most problematic is the revision of personality disorders, where they’ve made major changes; and the changes are not all supported by any empirical basis.”

• The Conditions Proposed by Outside Sources that are under consideration for DSM-5 contain several unsubstantiated and questionable disorder categories. For example, “Apathy Syndrome,” “Internet Addiction Disorder,” and “Parental Alienation Syndrome” have virtually no basis in the empirical literature.

New Emphasis on Medico-Physiological Theory

Advances in neuroscience, genetics, and psychophysiology have greatly enhanced our understanding of psychological distress. The neurobiological revolution has been incredibly useful in conceptualizing the conditions with which we work. Yet, even after “the decade of the brain,” not one biological marker (“biomarker”) can reliably substantiate a DSM diagnostic category. In addition, empirical studies of etiology are often inconclusive, at best pointing to a diathesis-stress model with multiple (and multifactorial) determinants and correlates. Despite this fact, proposed changes to certain DSM-5 disorder categories and to the general definition of mental disorder subtly accentuate biological theory. In the absence of compelling evidence, we are concerned that these reconceptualizations of mental disorder as primarily medical phenomena may have scientific, socioeconomic, and forensic consequences. New emphasis on biological theory can be found in the following DSM-5 proposals:

• The first of DSM-5’s proposed revisions to the Definition of a Mental Disorder transforms DSM-IV’s versatile Criterion D: “A manifestation of a behavioral, psychological, or biological dysfunction in the individual” into a newly collapsed Criterion B: [A behavioral or psychological syndrome] “That reflects an underlying psychobiological dysfunction.” The new definition states that all mental disorders represent underlying biological dysfunction. We believe that there is insufficient empirical evidence for this claim.

• The change in Criterion H under “Other Considerations” for the Definition of a Mental Disorder adds a comparison between medical disorders and mental disorders with no discussion of the differences between the two. Specifically, the qualifying phrase “No definition adequately specifies precise boundaries for the concept of ‘mental disorder” was changed to “No definition perfectly specifies precise boundaries for the concept of either ’medical disorder’ or ‘mental/psychiatric disorder’.” This effectively transforms a statement meant to clarify the conceptual limitations of mental disorder into a statement equating medical and mental phenomena.

• We are puzzled by the proposals to “De-emphasize medically unexplained symptoms” in Somatic Symptom Disorders (SSDs) and to reclassify Factitious Disorder as an SSD. The SSD Workgroup explains: “…because of the implicit mind-body dualism and the unreliability of assessments of ‘medically unexplained symptoms,’ these symptoms are no longer emphasized as core features of many of these disorders.” We do not agree that hypothesizing a medical explanation for these symptoms will resolve the philosophical problem of Cartesian dualism inherent in the concept of “mental illness.” Further, merging the medico-physical with the psychological eradicates the conceptual and historical basis for somatoform phenomena, which are by definition somatic symptoms that are not traceable to known medical conditions. Though such a redefinition may appear to lend these symptoms a solid medico-physiological foundation, we believe that the lack of empirical evidence for this foundation may lead to practitioner confusion, as might the stated comparison between these disorders and research on cancer, cardiovascular, and respiratory diseases.

• The proposed reclassification of Attention Deficit/Hyperactivity Disorder (ADHD) from Disorders Usually First Diagnosed in Infancy, Childhood, or Adolescence to the new grouping “Neurodevelopmental Disorders” seems to suggests that that ADHD has a definitive neurological basis. This change, in combination with the proposal to lower the diagnostic threshold for this category as described above, poses high risk of exacerbating the extant over-medicalization and over-diagnosis of this disorder category.

• A recent publication by the Task Force, The Conceptual Evolution of DSM-5 (Regier, Narrow, Kuhl, & Kupfer, 2011), states that the primary goal of DSM-5 is “to produce diagnostic criteria and disorder categories that keep pace with advances in neuroscience.” We believe that the primary goal of DSM-5 should be to keep pace with advances in all types of empirical knowledge (e.g., psychological, social, cultural, etc.).

Taken together, these proposed changes seem to depart from DSM’s 30-year “atheoretical” stance in favor of a pathophysiological model. This move appears to overlook growing disenchantment with strict neurobiological theories of mental disorder (e.g., “chemical imbalance” theories such as the dopamine theory of schizophrenia and the serotonin theory of depression), as well as the general failure of the neo-Kraepelinian model for validating psychiatric illness. Or in the words of the Task Force:

“…epidemiological, neurobiological, cross-cultural, and basic behavioral research conducted since DSM-IV has suggested that demonstrating construct validity for many of these strict diagnostic categories (as envisioned most notably by Robins and Guze) will remain an elusive goal” (Kendler, Kupfer, Narrow, Phillips, & Fawcett, 2009, p. 1).

We thus believe that a move towards biological theory directly contradicts evidence that psychopathology, unlike medical pathology, cannot be reduced to pathognomonic physiological signs or even multiple biomarkers. Further, growing evidence suggests that though psychotropic medications do not necessarily correct putative chemical imbalances, they do pose substantial iatrogenic hazards. For example, the increasingly popular neuroleptic (antipsychotic) medications, though helpful for many people in the short term, pose the long-term risks of obesity, diabetes, movement disorders, cognitive decline, worsening of psychotic symptoms, reduction in brain volume, and shortened lifespan (Ho, Andreasen, Ziebell, Pierson, & Magnotta, 2011; Whitaker, 2002, 2010). Indeed, though neurobiology may not fully explain the etiology of DSM-defined disorders, mounting longitudinal evidence suggests that the brain is dramatically altered over the course of psychiatric treatment.

Conclusions

In sum, we have serious reservations about the proposed content of the future DSM-5, as we believe that the new proposals pose the risk of exacerbating longstanding problems with the current system. Many of our reservations, including some of the problems described above, have already been articulated in the formal response to DSM-5 issued by the British Psychological Society (BPS, 2011) and in the email communication of the American Counseling Association (ACA) to Allen Frances (Frances, 2011b).

In light of the above-listed reservations concerning DSM-5’s proposed changes, we hereby voice agreement with BPS that:

• “…clients and the general public are negatively affected by the continued and continuous medicalization of their natural and normal responses to their experiences; responses which undoubtedly have distressing consequences which demand helping responses, but which do not reflect illnesses so much as normal individual variation.”

• “The putative diagnoses presented in DSM-V are clearly based largely on social norms, with ‘symptoms’ that all rely on subjective judgments, with little confirmatory physical ‘signs’ or evidence of biological causation. The criteria are not value-free, but rather reflect current normative social expectations.”

• “… [taxonomic] systems such as this are based on identifying problems as located within individuals. This misses the relational context of problems and the undeniable social causation of many such problems.”

• There is a need for “a revision of the way mental distress is thought about, starting with recognition of the overwhelming evidence that it is on a spectrum with ‘normal’ experience” and the fact that strongly evidenced causal factors include “psychosocial factors such as poverty, unemployment and trauma.”

• An ideal empirical system for classification would not be based on past theory but rather would “ begin from the bottom up – starting with specific experiences, problems or ‘symptoms’ or ‘complaints’.”

The present DSM-5 development period may provide a unique opportunity to address these dilemmas, especially given the Task Force’s willingness to reconceptualize the general architecture of psychiatric taxonomy. However, we believe that the proposals presented on www.dsm5.org are more likely to exacerbate rather than mitigate these longstanding problems. We share BPS’s hopes for a more inductive, descriptive approach in the future, and we join BPS in offering participation and guidance in the revision process.

References

American Psychiatric Association (2011). DSM-5 Development. Retrieved from http://www.dsm5.org/Pages/Default.aspx

British Psychological Society. (2011) Response to the American Psychiatric Association: DSM-5 development.
Retrieved from http://apps.bps.org.uk/_publicationfiles/consultation-responses/DSM-5%202011%20-%20BPS%20response.pdf

Compton, M. T. (2008). Advances in the early detection and prevention of schizophrenia.
Medscape Psychiatry & Mental Health. Retrieved from http://www.medscape.org/viewarticle/575910

Frances, A. (2010). The first draft of DSM-V. BMJ. Retrieved from http://www.bmj.com/content/340/bmj.c1168.full

Frances, A. (2011a). DSM-5 approves new fad diagnosis for child psychiatry: Antipsychotic use
likely to rise. Psychiatric Times. Retrieved from http://www.psychiatrictimes.com/display/article/10168/1912195

Frances, A. (2011b). Who needs DSM-5? A strong warning comes from professional counselors
[Web log message]. Psychology Today. Retrieved from http://www.psychologytoday.com/blog/dsm5-in-distress/201106/who-needs-dsm-5

Hanssen, M., Bak, M., Bijl, R., Vollebergh, W., & van Os, J. (2005). The incidence and outcome of subclinical psychotic experiences in the general population. British Journal of Clinical Psychology, 44, 181-191.

Ho, B-C., Andreasen, N. C., Ziebell, S., Pierson, R., & Magnotta, V. (2011). Long-term antipsychotic treatment and brain volumes. Archives of General Psychiatry, 68, 128-137.

Johns, L. C., & van Os, J. (2001). The continuity of psychotic experiences in the general population. Clinical Psychology Review, 21, 1125-1141.

Kendell, R., & Jablensky, A. (2003). Distinguishing between the validity and utility of psychiatric diagnoses. The American Journal of Psychiatry, 160, 4-11.

Kendler, K., Kupfer, D., Narrow, W., Phillips, K., & Fawcett, J. (2009, October 21). Guidelines
for making changes to DSM-V. Retrieved August 30, 2011, from
http://www.dsm5.org/ProgressReports/Documents/Guidelines-for-Making-Changes-to-DSM_1.pdf

Livesley, W. J. (2010). Confusion and incoherence in the classification of Personality Disorder: Commentary on the preliminary proposals for DSM-5. Psychological Injury and Law, 3, 304-313.

Moran, M. (2009). DSM-V developers weigh adding psychosis risk. Psychiatric News Online.
Retrieved from http://pn.psychiatryonline.org/content/44/16/5.1.full

Regier, D. A., Narrow, W. E., Kuhl, E. A., & Kupfer, D. J. (2011). The conceptual evolution of DSM-5. Arlington, VA: American Psychiatric Publishing.

Schatzberg, A. F., Scully, J. H., Kupfer, D. J., & Regier, D. A. (2009). Setting the record straight: A response to Frances commentary on DSM-V. Psychiatric Times, 26. Retrieved from http://www.psychiatrictimes.com/dsm/content/article/10168/1425806

Whitaker, R. (2002). Mad in America. Cambridge, MA: Basic Books. Also see http://www.madinamerica.com/madinamerica.com/Schizophrenia.html

Whitaker, R. (2010). Anatomy of an epidemic. New York, NY: Random House.

Filed under Allen Frances, Coalition for DSM-5 Reform, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-5 in the media, DSM-V, Joel Dimsdale, MSPB (FII), Psychiatric Times, Somatic Symptom Disorder, Somatoform Disorders

Next CFSAC meeting, Tuesday 8 and Wednesday 9 November (US)

October 18, 2011 by

Next CFSAC meeting, Tuesday 8 and Wednesday 9 November (US)

Post #101 Shortlink: http://wp.me/pKrrB-1gZ

Update @ October 19, 2011

An expanded version of the email I received from Mr Emmett Nixon on October 14 has now been posted on the CFSAC site at http://www.hhs.gov/advcomcfs/notices/n101811.html which includes the following:

“We will provide a video recording of the meeting on the CFSAC webpage, http://www.hhs.gov/advcomcfs, which will be posted within one week of the meeting. This recording will be compliant with Section 508 of the Rehabilitation Act and will include captions.”

**********************************************************************************************

Fall CFSAC meeting

The Federal Notice announcing dates for the Fall Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting was issued on October 5, 2011 and can be read here Federal Notice. At the time of publishing, an agenda for this meeting has yet to be released. I will update when the agenda has been published.

Custom TinyURL: http://tinyurl.com/November2011CFSAC

The two day meeting will be held on Tuesday, November 8, 2011 and Wednesday, November 9, 2011 at a new venue – the Holiday Inn Capitol, Columbia Room, 550 C Street, SW., Washington, DC.

Since May 2009, the entire meeting proceedings have been streamed as live video with videocasts posted online a few days after the meeting has closed. For the November meeting, CFSAC has stated that only a live audio feed will be provided rather than real-time visuals and auto subtitling and that a high quality video will be provided at a later date.

The Federal Notice can be read below and beneath that, a clarification received on October 14, from Mr Emmett Nixon (HHS/OAHS), CFSAC Support Team.

Meeting of the Chronic Fatigue Syndrome Advisory Committee

A Notice by the Health and Human Services Department on 10/05/2011

Summary

As stipulated by the Federal Advisory Committee Act, the U.S. Department of Health and Human Services is hereby giving notice that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a meeting. The meeting will be open to the public.

Table of Contents

DATES:
ADDRESSES:
FOR FURTHER INFORMATION CONTACT:
SUPPLEMENTARY INFORMATION:

DATES:

The meeting will be held on Tuesday, November 8, 2011 and Wednesday, November 9, 2011. The meeting will be held from 9 a.m. to 5 p.m. on November 8, 2011, and 9 a.m. to 4:30 p.m. on November 9, 2011.

ADDRESSES:

Holiday Inn Capitol; Columbia Room; 550 C Street, SW., Washington, DC 20024; Hotel (202-479-4000).

FOR FURTHER INFORMATION CONTACT:

Nancy C. Lee, MD; Designated Federal Officer, Chronic Fatigue Syndrome Advisory Committee, Department of Health and Human Services; 200 Independence Avenue, SW., Hubert Humphrey Building, Room 712E; Washington, DC 20201. Please direct all inquiries to cfsac@hhs.gov .

SUPPLEMENTARY INFORMATION:

CFSAC was established on September 5, 2002. The Committee shall advise and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including (1) The current state of knowledge and research and the relevant gaps in knowledge and research about the epidemiology, etiologies, biomarkers and risk factors relating to CFS, and identifying potential opportunities in these areas; (2) impact and implications of current and proposed diagnosis and treatment methods for CFS; (3) development and implementation of programs to inform the public, health care professionals, and the biomedical academic and research communities about CFS advances; and (4) partnering to improve the quality of life of CFS patients.

The agenda for this meeting is being developed. The agenda will be posted on the CFSAC Web site, http://www.hhs.gov/advcomcfs , when it is finalized. The meeting will be recorded and archived for on-demand viewing through the CFSAC Web site. It will be available by audio on both days and the call-in numbers will be posted on the CFSAC Web site.

Public attendance at the meeting is open. Those attending the meeting will need to sign-in prior to entering the meeting room. Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should notify the designated contact person at cfsac@hhs.gov in advance.

Members of the public will have the opportunity to provide oral testimony on both days of the meeting; pre-registration for oral testimony is required. Individuals who wish to address the Committee during the public comment session must pre-register by Wednesday, October 26, 2011, via e-mail to cfsac@hhs.gov. Time slots for public comment will be available on a first-come, first-served basis and will be limited to five minutes per speaker; no exceptions will be made. Priority will be given to individuals who have not presented public comment at previous CFSAC meetings. Individuals registering for public comment should submit a copy of their oral testimony in advance to cfsac@hhs.gov, prior to the close of business on Wednesday, October 26, 2011. If you wish to remain anonymous, please notify the CFSAC support team staff upon submission of your materials to cfsac@hhs.gov.

If you do not submit your written testimony by the close of business Wednesday, October 26, 2011, you may bring a copy to the meeting and present it to a CFSAC support team staff member. Your testimony will be included in a notebook available for viewing by the public on a table at the back of the meeting room.

Individuals who do not provide public comment at the meeting, but who wish to have printed material distributed to CFSAC members for review should submit, at a minimum, one copy of the material to the Designated Federal Officer at cfsac@hhs.gov prior to close of business on Wednesday, October 26, 2011. Submitted documents should be limited to five typewritten pages. If you wish to remain anonymous, please notify the CFSAC support team staff upon submitting your materials to cfsac@hhs.gov .

All testimony and printed material submitted for the meeting are part of the official meeting record and will be uploaded to the CFSAC Web site; this material will be made available for public inspection. Testimony and materials submitted should not include any sensitive personal information, such as a person’s social security number; date of birth; driver’s license number, State identification number or foreign country equivalent; passport number; financial account number; or credit or debit card number. Sensitive health information, such as medical records or other personal identifiable health information, or any non-public corporate or trade association information, such as trade secrets or other proprietary information also should be excluded from any materials submitted.

Dated: September 30, 2011.

Nancy C. Lee,

Designated Federal Officer, Chronic Fatigue Syndrome Advisory Committee.

[FR Doc. 2011-25739 Filed 10-4-11; 8:45 am]

On October 14, I received the following clarifications from Mr Emmett Nixon, (HHS/OAHS) CFSAC Support Team, in response to queries first raised with Dr Nancy Lee, on October 11, concerning the arrangements for the recording and streaming of this meeting and the rationale behind the change of venue.

Mr Nixon’s response (October 14, 2011):

“We have heard concerns about changes we have made in the venue and the format of the upcoming 2011 November Chronic Fatigue Syndrome Advisory Committee meeting. Below we provide additional details about the meeting.

“We are working diligently to address major shifts in budget restrictions and protecting the personal safety of the public attending the meeting. We have moved the Fall CFSAC meeting to the Holiday Inn 550 C. St. SW, Columbia Room, Washington, D.C. 20024. This change was made because the HHS Humphrey Building Room 800 cannot accommodate more than 50 persons, and we are required to escort all persons attending the meeting due to security measures in place. The Columbia room at the Holiday inn holds a maximum of 300 people and provides an opportunity for the public to move freely about the hotel, rest in their rooms and use open hotel areas including the hotel cafeteria and restaurant. HHS will continue to provide a quiet area in the rear of the Columbia room to accommodate those needing a place to rest. HHS will not provide any medical services.

“There will be a live audio link to the two day meeting, which allows listeners to hear the entire meeting in real time. Due to budgetary considerations, we are unable to provide a live-video cast as previously arranged. We will provide a video recording of the meeting on the CFSAC webpage http://www.hhs.gov/advcomcfs/ . This recording will provide a higher quality video at substantially lower cost.

“Time slots for public testimony will be available on a first-come, first-served basis and limited to five minutes per speaker. Priority will be given to individuals who have not given public testimony in previous meetings. Three hours have been allotted for public testimony. As before, we will accommodate persons who want to provide their testimony by telephone.

“The CFSAC Support Team”

On October 17, I wrote again to Mr Nixon, CC Dr Nancy Lee and Dr Chris Snell, Chair, CFSAC Committee, requesting that the decision not to provide live video streaming be reviewed, citing the issue of accessability to a public meeting by a patient group with disabilities, sensory processing difficulties and cognitive impairment and that a precedent had been set in May 2009 when video streaming was introduced for these meetings, which are viewed live not just in the US, but internationally.

In raising this issue with CFSAC Support Team, I have presented my concerns as an individual and have no connection with any other initiatives or approaches that might be being made to the Committee in respect of similar concerns over the arrangements for this November meeting.

Related material

Minutes of May 10-11 2011 CFSAC meeting (Discussion of coding of CFS for ICD-10-CM)

Filed under American Psychiatric Association (APA), CFSAC meetings, DSM revision process, DSM-5, DSM-5 draft proposals, DSM-5 in the media, ICD-10, ICD-10-CM, Somatic Symptom Disorder, WHO (World Health Organization)

Minutes of May 10-11 2011 CFSAC meeting (Discussion of coding of CFS for ICD-10-CM)

October 18, 2011 by

Minutes of May 10-11 2011 CFSAC meeting (Discussion of coding of CFS for ICD-10-CM)

Post #100 Shortlink: http://wp.me/pKrrB-1gv

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include:

• factors affecting access and care for persons with CFS;

• the science and definition of CFS; and

• broader public health, clinical, research and educational issues related to CFS.

Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women’s Health, which is part of OASH.

Dr. Nancy C. Lee, Deputy Assistant Secretary for Health – Women’s Health, is the Designated Federal Officer for CFSAC.

The Spring meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) was held on May 10-11, 2011 in Room 800, Hubert H. Humphrey Building, 200 Independence Ave, S.W., Washington, D.C.

The Fall meeting has been announced for Tuesday, November 8 and Wednesday, November 9 but will be located in a different venue. The November meeting will be hosted at the Holiday Inn Capitol, Columbia Room, 550 C Street, SW., Washington, D.C. See next post for Federal Notice. At the time of publication, no agenda for the Fall meeting has been issued.

Minutes Day One and Two Spring 2011 meeting from this page: Minutes May 10-11 CFSAC

Presentations Day One and Two: Presentations and Meeting Materials

Public and Written Testimonies here: Public Testimonies

Recommendations approved from Spring meeting: Recommendations CFSAC May 10-11

Videocasts of the entire two day proceedings can be viewed here: Videocasts Day One and Two

Current Roster     CFSAC Charter

 

Discussion of ICD-10-CM and DSM-5 at the May CFSAC meeting

Of particular interest to the scope of this site was the Agenda item on Day One at 1:15 p.m.

Discussion of International Classification of Diseases-Clinical Modification (ICD-CM) concerns
Committee Members

Dr Wanda Jones, outgoing Designated Federal Officer for CFSAC, had invited a representative from the National Center for Health Statistics to attend the meeting, though no-one had been available for that date.

Instead, Dr Jones presented Committee members with a four page document ICD-related questions from CFSAC for May 2011 meeting as background information.

The document, which can be downloaded in PDF format here, set out responses to the following questions:

What are the key steps in development of the ICD-10-CM?
How does the ICD-CM (whatever version, -9, -10, etc.) align with past and current versions of the -CM and with the WHO’s current and past versions?
How is the ICD-CM used in policy-related decision making?
What difference does coding designation make? How do we get providers to use a particular code–is it an issue of education, of outreach, or what? If codes related to CFS are in several different places, doesn’t that affect the count? And finally, if the codes change, do we lose the numbers from the prior coding systems?
How does ICD coding relate to DSM coding (or does it)?
Partial List of Organizations Consulted and/or Reviewing ICD-10-CM During Development and Ongoing Maintenance of ICD-10-CM

 

CFSAC Recommendations – May 10-11, 2011

Following a 45 minute discussion of the forthcoming partial code freeze, the implications for CFS and ME patients of current proposals for ICD-10-CM and in the context of draft proposals by the DSM-5 Work Group for “Somatic Symptoms Disorders”, a new Recommendation was proposed by Dr Lenny Jason, seconded by Dr Nancy Klimas, and voted unanimously in favour of by the Committee.

The specific recommendation articulated by the Committee in respect of the agenda item above was:

1. CFSAC rejects current proposals to code CFS in Chapter 18 of ICD-10-CM under R53.82: Chronic fatigue, unspecified > Chronic fatigue syndrome NOS. CFSAC continues to recommend that CFS should be classified in ICD-10-CM in Chapter 6 under “diseases of the nervous system” at G93.3, in line with ICD-10 and ICD-10-CA (the Canadian Clinical Modification), and in accordance with the Committee’s recommendations of August 2005. CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in US disease classification systems. (Note: no disease classification system under HHS’ control proposes to move or to include CFS in or among psychiatric conditions.)

Information on the ICD-9-CM Coordination and Maintenance Committee September 2011 meeting referred to by Dr Jones, in the Minutes, can be found on this page.

Information of the International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) draft due for implementation in October 2013 can be found on this page.

Video of this section of the meeting can be viewed here at Videocast Day One at 4hrs 27 mins in from start of broadcast.

I should like to thank Dr Lenny Jason, whose term as a CFSAC Committee member ends following the November meeting, for informing the Committee around current proposals for the forthcoming ICD-10-CM, on the classification of PVFS, ME and CFS in ICD-10 and on the development of ICD-11 and for also raising with the Committee concerns around DSM-5, an issue that had not previously been discussed in any depth at a CFSAC meeting.

Extract (Pages 26-29) Minutes May 10-11 CFSAC

DISCUSSION OF INTERNATIONAL CLASSIFICATION OF DISEASES – CLINICAL MODIFICATION (ICD-CM) CONCERNS

Dr. Christopher Snell

• Brought the meeting to order. Noted they would have a discussion of the ICD-related questions and the proposed reclassification of chronic fatigue syndrome.

• Advised there was a page in the members’ notebooks tabbed after the State of the Knowledge summary which noted key steps in the development of the ICD 10 CM, so a clinical modification of the World Health Organization’s (WHO) ICD 10. It would replace ICD 9.

• Stated his understanding of the issues:

o Disconnect between the way the U.S. uses the classification and the rest of the world.
o The way CFS is classified under the ICD system has implications for both reporting of incidents, morbidity and mortality.
o Used by outside agencies to categorize the illness for purposes of inclusion or exclusion. Opened the floor for discussion.

Dr. Wanda Jones

• Clarified that the committee requested that the National Center for Health Statistics have someone to talk to them about the international classification of diseases, about the process, about how the U.S. adapts the WHO index, ( the ICD) for use and about opportunities for dialogue.

• Noted that a meeting was set a year ago for May 10 and 11 in Baltimore that engaged resources of CMS, parts of the federal government focused on health IT and the entire ICD team from the National Center for Health Statistics (NCHS).

• Noted that as a result no one was available for the CFSAC meeting.

Page 27 of 41

• In lieu of their attendance, she developed some questions that the NCHS, ICD team responded to.

• Tried to clarify the questions so they would have a good understanding of the key processes and the key inflection points differentiating the WHO process from the U.S. ICD-CM, the clinical modification process.

• Raised additional questions regarding how alignment from prior versions is maintained and how ICD coding is used in decision-making.

• Noted also the relationship between the coding and the diagnostic and statistical manual (DSM). Stated that the information was provided by the NCHS and is meant to generate discussion.

• Stated that the ICD-CM process is a public process with regularly scheduled public meetings. Noted that there is an opportunity to comment as part of that process and to engage.

• Confirmed that the NCHS stated that there has been no public presence from the CFS community at the meetings.

• Noted that this was the process for people interested in CFS coding to become involved. Confirmed that there was a lock procedure that is soon to be executed for the ICD 10 CM.

• Noted it had been in development for a decade and the United States’ move to electronic records means it has to temporarily lock the codes. The electronic health records software would not be ready if they keep changing them.

• Noted that information about coding changes would continue to be collected, taken under advisement and the NCHS would continue the process of evaluating.

• Stated that once it is in public use then that lock will release and there would be an opportunity on a periodic basis for updating.

Dr. Leonard Jason

• Stated that the committees are developing ICD 10 CM and it intends to retain CFS in R codes (R53.82) and this means that the symptoms, signs, abnormal results of clinical or other investigative procedures are ill-defined conditions.

• Stated that R-codes means it’s an ill-defined condition regarding which no diagnosis is classifiable elsewhere. Explained that if it cannot be diagnosed elsewhere in ICD 10 it goes into a R-code.

• The intention in ICD 11 is to put CFS with two other conditions (post viral fatigue syndrome and benign myalgic encephalomyalitus) under a G-code, being G93.3 or diseases of the nervous system. Noted that coding CFS under the R-code in the proposed ICD 10 CM would place it out of line with the International ICD 10 used in over 100 countries.

• Discussed the problems and implications of the U.S. coding of CFS as compared with how other countries are coding it.

Page 28 of 41

It would exclude it from the R53 malaise and fatigue codes, which would imply that CFS does not have a viral etiology.

• Brought forward a motion to be considered:

CFSAC rejects current proposals to code CFS in Chapter 18 of ICD 10 CM under R53.82 chronic fatigue syndrome unspecified, chronic fatigue syndrome NOS (not otherwise specified). CFSAC continues to recommend that CFS should be classified in the ICD 10 CM in Chapter 6 under diseases of the nervous system at G93.3 in line with international ICD 10 in ICD 10 CA which is the Canadian clinical modification and in accordance with the committee’s recommendation which we made in August of 2005. CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in U.S. disease classification systems.

• Noted that ME and CFS patients could be potentially vulnerable to the current DSM 5 proposals because those proposals are highly subjective and difficult to quantify.

• Noted that retaining the CFS in the R-codes in the IDC 10 CM differentiates the U.S. from other countries but it renders CFS and ME patients more vulnerable to some of the DSM 5 proposals, notably chronic complex symptom disorder [sic].  [Ed: Complex Somatic Symptom Disorder]

Dr. Klimas asked for clarification, and Dr. Jason said that in 2013 they would move from DSM 4 to DSM 5. As it stands they would be collapsing somatization disorder, undifferentiated somatoform disorder, hypochondriasis and some presentations of panic disorder [sic] [Ed: pain disorder]  into complex somatic symptom disorder. Dr. Klimas clarified that his concern was that the CFS ICD 9 codes would put the non post viral patients into this somatoform cluster. Dr. Jason indicated that this was so.

Dr. Klimas seconded the motion. Mr. Krafchick agreed and stated that the ramifications of the classification would be disastrous for patients, because it would limit disability payments to two years. Dr. Jones clarified that for now the clock was ticking, however once the codes were released, they could be revised, it’s just the implementation of the electronic system which is causing it to be locked at a particular point in time. While CFSAC has shared concerns with NCHS, there is an official process for engaging with them on their discussions regarding the codes. The US was interested in morbidity, in case claims. It is important that providers know how to best categorize things, and provide guidance on which codes to consider based on the science for the disease being evaluated.

Mr. Krafchick stated that the issue was that the criteria for the codes was etiology/trigger based. Dr. Jones clarified that it would still remain in the clinician’s judgment, however if they could not identify where the trajectory developed toward CFS, then it would wind up in the R codes. Dr. Jones clarified also that the NCHS does not view the R category as a somatoform disorder. Mr. Krafchick and Dr. Snell indicated they understood this but it would still represent vulnerability for patients when classifying.

Dr. Jason restated his recommendation.

Page 29 of 41

Dr. Marshall stated his concern that there was an attendant risk with this, but that they were between a rock and a hard place. He agreed CFS/ME being classified as a somatoform disorder was inappropriate, but at the same time that the recommendation says it’s a complex multi-system disease, it categorizes it within a single nervous system disease silo. This might affect future research funding opportunities with people saying they don’t fund neurological research. He expressed the view that they should advocate for classification in a multi-system disease category rather than putting it in a nervous system disease category for future, though this category did not exist now. It would be a good thing for patients short term, but it could be a long term risk.

Dr. Snell said that given the amount of current funding, this wasn’t a risk. Dr. Marshall said that using reverse translational research as had been advocated during the meeting might increase the role of this categorization, and could be restrictive in funding.

Dr. Jones asked whether the recommendation being put forward was the same as the May 2010 recommendation, and Dr. Jason said that his was dramatically different. Mr. Krafchick underscored how the insurance companies use these ICD codes. If it was classified in something that could be psychiatric it will be psychiatric, so they can deny coverage.

Dr. Levine asked about co-morbid disorders and how these are weighted. Dr. Jones responded that she did not think that there was a weighting. It would get listed like a death certificate, a cause of death and then a secondary, sometimes a third. She stated it was the judgment of the clinician how it was listed.

Dr. Klimas expressed the view that coding was also problematic because clinicians code to get paid. There already exists a bias against coding CFS as CFS because the codes could not be used for billing. She stated that they would make a conscious decision not to code CFS as CFS. She indicated that neurology was a fine place for it to be categorized, and at least this would assist people who may be looking for patient data, as it wouldn’t be ignored.

Dr. Snell asked for a vote of all those in favor regarding Dr. Jason’s motion. The motion passed unanimously.

Dr. Jones noted that she would share this recommendation with the NCHS but repeated that unless someone moved forward to intervene in the official processes in the public record it may not move forward or have an effect.

Dr. Jones noted that the next ICD meeting is September 14 – 15, 2011 with public comments due July 15. Noted this will be put on the CFSAC website. She noted she would check the rules to see if a member of the CFSAC or the Chair would be able to give public testimony at another advisory committee meeting. Mr. Krafchick said that if it were possible to send someone as a member of the committee, it would make a great deal of sense and be very important. Dr. Jones said they would figure out how this could happen. Ms. Holderman asked whether this notice, and any future notices where they might want to intervene, could be placed on the CDC website. She stated this cross listing would be useful.

Page 30 of 41

Dr. Jones said that from her experience with the fast evolving HIV coding, there was a dialogue so that coding kept up. She expected there would be some connection, however not as comprehensive or active as that disease.

Dr. Mary Schweitzer, a member of the public, stated that the NCHS did come to CFSAC in 2005 and Dr. Reeves at the time was specific and said that CFS needed to be in R53 due to his own method of diagnosis. She suggested that this showed an obvious connection between the CFS side of CDC and NCHS at the time.

[Extract from Minutes, CFSAC Day One: May 10, 2011 ends]

Filed under American Psychiatric Association (APA), CFSAC meetings, Clinical Modification, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, ICD-10, ICD-10-CM, ICD-11 Alpha Draft, Somatic Symptom Disorder, Somatoform Disorders

Position statement on proposed coding of CFS in ICD-10-CM

September 25, 2011 by

Position statement on proposed coding of CFS in ICD-10-CM

Post #99 Shortlink: http://wp.me/pKrrB-1gh

25 September 2011

Since I continue to be misrepresented on at least one platform I am reluctantly publishing a public position statement.

ME agenda is the name of one of several WordPress sites that I own. The site name was registered with WordPress in 2007. ME agenda is also the username I use on Facebook, Twitter and on a number of other internet platforms.

Within the last few days, ME agenda has several times been referred to as “a group” on Phoenix Rising forum and elsewhere. I have already clarified that ME agenda is not a “group” nor any kind of organisation.

On the Disclaimer page of my Dx Revision Watch website it states:

“Dx Revision Watch is not an organisation.

“This site has no connection with and is not endorsed by the American Psychiatric Association (APA), American Psychiatric Publishing Inc., World Health Organisation (WHO) or any other organisation, institution, corporation or company.

“This site has no affiliations with any commercial or not-for-profit organisation. The site operates independently of any patient or advocacy organisation or group.

“This site does not accept advertising, sponsorship, funding or donations and has no commercial links with any organisation, institution, corporation, company or individual.”

On my ME agenda website Disclaimer page it also states:

“ME agenda is not an organisation.

“This site has no connection with and is not endorsed by any organisation, institution, corporation or company. The site has no affiliations with any commercial or not-for-profit organisation and operates independently of any patient or advocacy organisation or group.

“This site does not accept advertising, sponsorship, funding or donations and has no commercial links with any organisation, institution, corporation, company or individual.”

So ME agenda is not “a group”; does not function as “a group” nor as any form of organisation, and the name ME agenda and my websites are associated only with one individual – myself.

The advocacy work that I do under my own name and in association with the name ME agenda is undertaken as an individual with an interest in a specific health area, as a primary carer of a young adult. I do not claim a mandate to represent others and the views and opinions I hold are the views and opinions of a single individual.

I therefore request that neither I nor ME agenda nor my websites are referred to on any platform as “a group”, since this is erroneous and misrepresents me.

It has also been misstated on Phoenix Rising forum and elsewhere, that I am “trying to get CFS reclassified as ME.”

This is not the case and again, misrepresents my position.  My position is this:

I consider as an individual, not as any form of “group”, since I am not any form of “group”:

that it will hurt patients if Chronic fatigue syndrome is coded in ICD-10-CM under Chapter 18, the chapter for “Symptoms, signs and ill-defined conditions”, under “R53.82 Chronic fatigue, unspecified > Chronic fatigue syndrome NOS”;

that Chronic fatigue syndrome should be coded to the “G93” parent class, in line with ICD-10, ICD-10-CA (Canada) and ICD-10-GM (Germany), and in line with ICD-11 proposals that Chronic fatigue syndrome should be classified within Chapter 6: Diseases of the nervous system;

that classifying Chronic fatigue syndrome under the Chapter 18 “R” codes, in ICD-10-CM, will render patients more vulnerable to the proposals of the DSM-5 “Somatic Symptom Disorders” workgroup.

These are views shared by other advocates, patients and carers, internationally, by the US CFSAC Committee (the Chronic Fatigue Syndrome Advisory Committee that provides advice and recommendations to the Secretary of Health and Human Services) and by a number of US 501(c)(3) registered patient advocacy organisations.

At no time have I stated or implied that I am “trying to get CFS reclassified as ME”.

It should also be noted that I have had no involvement in or input into the initiative of the US Coalition4ME/CFS to make representations to the NCHS Committee responsible for updates to the US specific ICD-9-CM and development of ICD-10-CM, which replaces ICD-9-CM in October 2013.

I hope this makes my position clear and I trust that there will be no future misrepresentation of my views or my actions on any platform.

Discussion of the issue of the long-standing proposals for the coding of Chronic fatigue syndrome in ICD-10-CM was on the agenda of the meeting of the ICD-9-CM Coordination and Maintenance Committee which took place on September 14.

An audio of this meeting and PDFs of meeting materials can be accessed from this page on the CDC website:

http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm

These materials and links and related ICD-10-CM coding issue material will be added to this site in due course.

Suzy Chapman
_____________________

https://dxrevisionwatch.wordpress.com
http://meagenda.wordpress.com
http://www.facebook.com/MEagenda
http://twitter.com/MEagenda

Filed under American Psychiatric Association (APA), CFSAC meetings, Clinical Modification, DSM revision process, DSM-5, DSM-5 draft proposals, ICD-10, ICD-10-CM, ICD-11, ICD-11 Alpha Draft, Somatic Symptom Disorder

Important notice from DSM-5 Development website (further extension to comment period)

July 15, 2011 by

Important notice from DSM-5 Development website (further extension to comment period)

Post #98 Shortlink: http://wp.me/pKrrB-1eW

DSM-5 Development

http://www.dsm5.org/Pages/Default.aspx

Friday, July 15th: We are experiencing some site difficulties and our system is unable to accept comments today. As this is the final day of our open comment period, we encourage you to submit your comments to dsm5@psych.org. We will make sure your comments, if posted by midnight, July 18th, are directed to the appropriate DSM work group(s) for their review. We apologize for the inconvenience and appreciate your contributions to this important diagnostic revision.

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), Joel Dimsdale, MUS, Somatic Symptom Disorder, Somatoform Disorders

Three days left before the second DSM-5 stakeholder review period closes

July 13, 2011 by

Three days left before the second DSM-5 stakeholder review period closes

Post #97 Shortlink: http://wp.me/pKrrB-1eA

On June 16, the American Psychiatric Association (APA) announced an extension to its second public stakeholder review of draft proposals for categories and criteria for the next edition of the Diagnostic and Statistical Manual of Mental Disorders, which will be known as “DSM-5”.

The closing date for submissions is now Friday, July 15.

There are just three more days left in which to submit letters of concern in response to potentially damaging proposals being put forward by the Work Group for “Somatic Symptom Disorders” – the DSM-5 committee charged with the revision of existing DSM-IV “Somatoform Disorders” categories. 

Today, patient advocate, Caroline Davis, has sent me a copy of her letter for inclusion on this site. Ms Davis tells me she has made her submission available for other patients to use.

If you haven’t already submitted a comment, please do, however brief. You’ll find  information on making submissions in this post: http://tinyurl.com/DSM-5-register-to-comment.

Proposed criteria and two key documents are posted here: http://wp.me/pKrrB-13z.

For examples of other letters of concern, you’ll find copies of this year’s submissions, including the Coalition4ME/CFS’s resource materials and template letter, collated here: http://wp.me/PKrrB-19a. These include letters of concern from international patient organizations, professional stakeholders, patients, patient advocates and professional bodies.

If you have already submitted but have other points to make, please submit a second response. 

If you know an informed professional please alert them today to the implications for patients with ME, CFS, IBS, FM, CI, CS, Gulf War illness and other illnesses that are bundled under the “Functional Somatic Syndromes” and “Medically Unexplained” umbrellas.

If the Work Group’s current proposals are approved, these illnesses will be sitting ducks for an additional mental health diagnosis of a “Somatic Symptom Disorder”.

If you haven’t yet registered your concerns, please get a letter in before the feedback period closes on July 15!

Submission by patient advocate, Caroline Davis

J 00 Complex Somatic Symptom Disorder

I would like to express my deep concern about the proposed new category of Complex Somatic Symptom Disorder (CSSD) in DSM-5 scheduled for release in 2013.

CSSD proposes to add a mental health diagnosis to any condition where the sufferer has been ill for more than six months, and has developed ‘excessive’ concern about his or her health.

Since most good employers have a sick leave scheme which pays full or most-of-full pay for six months, this timeframe coincides most unhealthily with:

a) The individual’s realisation that their illness might not resolve, and/or might possibly be a disability and

b) A concerted effort to research their condition and seek more tests and treatments in order to get well and

c) The looming possibility of job loss, financial penury and the imminent need to make insurance or disability claims.

A patient in such a situation is likely to fall slap-bang within the CSSD criteria of:

(2) Disproportionate and persistent concerns about the medical seriousness of one’s symptoms and

(3) Excessive time and energy devoted to these symptoms or health concerns

The effect is to automatically deliver a diagnosis for an Axis I psychiatric disorder, simply for finding out what is causing one’s symptoms after such a long time of being ill, and wanting to do the best one can in order to get well and save one’s job and prospects for the future.

There is no empirical data to support the existence of ‘CSSD’. I believe that it is neither clinically safe nor morally right to force through un-researched, untried, untested (and possibly entirely inaccurate) diagnostic criteria for an entirely un-researched, untested (and possibly false) psychiatric condition. As your paper itself says, CSSD is merely ‘a construct’. There is no empirical evidence to support this ‘construct’ but plenty of circumstantial and factual evidence for why this ‘construct’ has been proposed and is being pushed forward with such unseemly speed.

Most patients are sick, but not stupid. We were managers, scientists, teachers, medical people, civil servants and business people in our former lives, and we still have functioning brains. We can see that names on the DSM committee considering CSSD include those in the pay of insurance companies and Governments (including the UK medical establishment). We also know that the implications of DSM-5 will extend to the next version of WHO.

There are those on your committee who wish only to do the bidding of their financial paymasters, and they are doing this by creating diagnoses such as ‘CSSD’ which will allow insurance companies and Government agencies to deny the claims of the genuinely sick and disabled. I urge the rest of the committee members not to allow them to do this, and to remain faithful to the objectives of WHO classifications as an excellent source of unbiased medical knowledge for the guidance of medical practitioners across the world.

Please do not let the DSM – and by implication the WHO classifications – become the vehicle of Governments and insurance companies to get their financial needs met.

I urge the committee to see past the claim that: a ‘diagnosis of CSSD could be applied to any patient with any diagnosis’. In clinical practice, as well as in your own discussions, it is already clear that this ‘diagnosis’ would be applied far more readily to patients already vilified for having conditions for which there is no objective medical test, eg: IBS, ME/CFS, FM, Gulf War Syndrome, interstitial cystitis, long-term pain and others. I urge the committee to examine the level of medical research funding dedicated to these conditions: they will find that funding for biomedical research has been restricted to bare, minimal levels for the past thirty years, which goes a long way toward explaining why there are no differential medical tests for these conditions yet. The solution is more and better biomedical research, not to create a new ‘bucket’ classification to financially manage-away these conditions.

I urge the committee to consider the consequences of moving too fast to approve a classification which is likely to be immediately pejorative to patients. The inclusion of ‘CSSD’ as a possibility for diagnosis will tap into the already hysterical media and ‘biopsychosocial’ research claims and pronouncements about these misunderstood and underestimated conditions.

The consequences – unintended by those whose moral conscience on DSM-5 is clear, and jauntily dismissed by those for whom recognition of these conditions would be financially and politically injurious – are likely to be catastrophic. They include: sceptical medical practitioners who will increasingly believe that it is OK not to test and treat, nor to provide appropriate care, nor to support disability benefit claims; and insurance companies who continue to charge huge premiums and would (with CSSD in place) be free to dismiss valid claims for some of the sickest people they serve.

Not only is this not an appropriate route to management or cure for such patients, but the consequences will quickly spiral into poverty, physical distress and in some cases preventable death.

Even if a patient should subsequently recover, the stigma of a mental health diagnosis is likely to legislate against the possibility of future employment and full reconstruction of a career at pre-illness levels. Thus it would have a direct economic effect on both the individual and the economy.

How much is CSSD really about the management of sickness and disability in patients by doctors and health service professionals, and how much is it the product of financial machinations by insurance companies and Governments seeking to minimise liability for medical care and disability?

While there is such a dearth of properly-conducted research (by non-partisan medical scientists) into the medical validity, applicability and usefulness of CSSD as a diagnosis; and while the likelihood of rushing into including it is likely to have such potentially dire consequences for patients (and, through effects on reputation and liability, also for medical practitioners) I request and appeal for CSSD to be omitted from the DSM-5.

Yours sincerely

Caroline Davis

Patient, advocate

  

Second DSM-5 public review of draft criteria

The closing date for comments in the second DSM-5 public review has been extended to July 15.

Register to submit feedback via the DSM-5 Development website here: http://tinyurl.com/Somatic-Symptom-Disorders

Once registered, log in with username and password and go to page: http://tinyurl.com/DSM-5-CSSD

Copies of this year’s submissions are being collated here: http://wp.me/PKrrB-19a

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, Francis Creed, Functional Somatic Syndrome (FSS), ICD-11, Somatic Symptom Disorder, Somatoform Disorders

← Older posts

Newer posts →