DSM-5 SSD submissions 2011

If you you are looking for submissions for the first public review (February 10 – April 20, 2010), you need this page:  http://wp.me/PKrrB-AQ

Submissions to the second DSM-5 public review, May 4 – June 15, 2011 (extended to July 15)

Update: Comment period extended on July 15, 2010 to midnight July 18, 2010

Due to a problem with the DSM-5 Development site, submissions should now be sent directly to the APA, by email, using this email address: dsm5@psych.org until the feedback exercise closes on July 18, 2011.

Now extended to July 15, 2011

Organizations, professionals, patients and advocates submitting comments in the second DSM-5 draft proposal review process are invited to provide copies of their submissions for publication on this page. Submissions will be posted in the order they are published or as they come to my attention, with the most recent submissions at the top of each section. For ease of reference, the Coalition4ME/CFS’s “Call to Action” is posted at the top of the page. Last year’s submissions are collated on this page.

Page 1: International patient organizations

Coalition4ME/CFS (US); 25% ME Group with Greg Crowhurst (UK); CFIDS (US); Rocky Mountain CFS/ME and FM Association (US); National ME/FM Action Network (Canada); The Danish ME Association; ESME (Int); EMEA (Int); The ME Association (UK); Action for M.E. (UK); IACFS/ME (US); ME Free For All.org (UK); The Young ME Sufferers Trust (UK)

Page 2: Medical, allied health and other professional stakeholders

Dr Alan Gurwitt, M.D., President, Massachusetts CFIDS/ME & FM Association; Bill Goodin, M.D. (US); Richard A. Van Konynenburg, Ph.D. (US); Therese Duncan J.D., CADCII, ICADC (US); Angela Kennedy, sociology lecturer (UK); Dr John L Whiting MD, (Australia)

Page 3: Patients and advocates

Andrew (US); UK patient 3; US patient 1; Caroline Davis (UK); B Tilley (UK); Suzy Chapman (UK) (2); Glen Rich (Canada); Maarten Maartensz (NL); Jay Spero (US); UK patient 2; 26yearsME/CFS; UK patient 1; Gabrielle Lewis (UK); Chris Douglas (UK); Kati (Canada); Kevin Short (UK); Susanna Agardy (Australia); Mary Barker (US); Peter Kemp (UK); Mary M. Schweitzer (US)

Page 4: Professional bodies

British Psychological Society (BPS)

International patient organization submissions

Submission by the Coalition4ME/CFS (US)

The Coalition4ME/CFS – a coalition of US ME/CFS non-profit organizations – has issued a Call to Action on the impending DSM-5 proposal and provided information to assist organizations and patients in writing their own letter to the American Psychiatric Association. The submission period ends June 15th.

Full announcement: http://www.coalition4mecfs.org/News.html

    Position paper: http://www.coalition4mecfs.org/DSM-5_Position_Paper_-_FInal2.pdf

Letter to the DSM-5 Task Force – Letter available for use as template or to quote from: http://www.coalition4mecfs.org/DSM5letter.html

THE COALITION ANNOUNCEMENT

DSM-5 Background:

Why this call to action is important to you:

Among other changes, the DSM-5 proposal includes the establishment of a new category called Complex Somatic Symptom Disorder (CSSD). The criteria for a CSSD diagnosis include somatic symptoms that last more than 6 months and significantly disrupt life combined with the doctor’s assessment that the patient has a disproportionate concern about the medical seriousness of his symptoms. The guidelines also include recommendations of Cognitive Behavior Therapy (CBT) and antidepressants as the appropriate therapies.

CSSD could prove disastrous for the ME/CFS patient and for patients with other diseases like Fibromyalgia, Gulf War Illness and IBS that are misunderstood, misdiagnosed and mistreated by the medical community at large. For doctors who view the ME/CFS patient as ‘just depressed’, it will be a small leap to decide that the patient has “disproportionate and persistent concerns about the medical seriousness of one’s symptoms” and, as a result, inappropriately diagnose CSSD. Once diagnosed with CSSD, the implications for diagnosis, treatment, disability and insurance will be profound.

The background and associated issues with the DSM-5 and CSSD can be found in the attached “Complex Somatic Symptom Disorders Position Paper” developed by the Coalition 4 ME/CFS.

What you can do:

The Coalition 4 ME/CFS has sent a response to the APA on this issue, which you can find here. (Feel free to use this letter as a template for your response). The DSM-5 team also needs to hear from as many of you as possible about your concerns. Feel free to draw from the Coalition 4 ME/CFS letter for your own comments. Remember, this must be done by June 15, 2011.

Here are the steps to follow to provide your input:

1. Register on the DSM-5 web site to make comments. The “Register Now” site is in the upper right hand corner of the DSM-5 home page. You will receive a confirmation email with a temporary password that you will have to click on to complete registration. If you have registered previously, you should still have an account and can log in in the same box.

2. Provide your comments directly on the CSSD page. It is probably easiest to create your comments outside of the interface and then copy them in. Bolding and other formatting appear to be lost when you copy your document in.

Thank you,

Coalition 4 ME/CFS

• Other Resources -Suzy Chapmans is an extensive resource for these issues; see the Dx Revision Watch

Check out other organizations letters in the comments below and on this page

The Coalition4ME/CFS consists of the

• CFS/Fibromyalgia Organization of Georgia, Inc.
• CFS Knowledge Center
• CFS Solutions of West Michigan
• PANDORA Inc. – Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.
• Phoenix Rising
• Rocky Mountain CFS/ME & FM Association (RMCFA)
• Vermont CFIDS Association Inc.
• Wisconsin ME/CFS Association, Inc.

US ME/CFS Non-profit organizations are invited to join the Coalition.

Get on the Coalitions email list here: http://www.coalition4mecfs.org/contact.html

Submission by the 25% ME Group jointly with “Stonebird” (Greg Crowhurst) (UK)

This document is 11 pages long and I am posting only the Executive Summary. The full submission can be read here:

http://www.stonebird.co.uk/severemesubmission.doc

or opened here on Dx Revision Watch: 25% ME Group DSM-5 submission 12.06.11

25% ME Group & Stonebird

Submission re: DSM-V and ME/CFS

Greg Crowhurst July 12th 2011

(This joint submission is being made further to the previous submission by the 25% ME Group on 20th March 2010 re: DSM-V and ME/CFS)

“The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME”.

Professor Peter White, response to Professor Malcolm Hooper.
http://www.meactionuk.org.uk/Hoopers-initial-response-to-PDW-letter.htm

Executive Summary:

The inappropriate involvement of psychiatry, particularly the Wessely School, in ME in the UK, promoting a psychosocial agenda and even denying the definition and existence of ME as a neurological disease, would make it wrong for the DSM to validate CSSD and SSSD, until such time as ME is properly recognised as a neurological disease with the development of proper biomedical ME pathways and treatments established, to safe guard this extremely vulnerable group.

Because of the disregard, shown by the Wessely School of the WHO classification of ME as a neurological disease and its alternative term, CFS, patients with Myalgic Encephalomyelitis currently have no safe pathways through the UK Health Service.

They are likely to be quite wrongly treated as if they have a mental health disorder.

Because the specific elements of DSM5 are so closely linked to the way ME can be wrongly described by the Wessley school and because the term CFS has been widely adopted in the UK to mean ME, a neurological disease, and because CFS has been deliberately called a mental health disorder by the Wessley school, patients with an assessment of CFS have been wrongly exposed to psychiatric treatments and interpretations.

If the DSM validates CSSD and SSSD then patients with a current CFS diagnosis in the UK will be further wronged by potentially changing this diagnosis to these newly created somatoform categories. And a person with ME is in great danger of being shifted from an appropriate neurological disease categorization to a legitimate – but made up – category of mental health.

Because ME is currently so open to mental health misinterpretation, it would make it even more likely that people with ME will be mistreated; the DSM will have inadvertently given greater permission and validation for this to happen.

CSSD and SSD, the Simple and Complex Somatic Symptom Disorder categories, must not be given formal legitimacy, because they are profoundly unsafe for people with ME…

Full 11 page document here

CFIDS posted this commentary on its website, followed by letter to APA:

APA Requests Comments on Proposed DSM-5 RevisionsPolicy Matters | 14. Jun, 2011

by Kim McCleary

According to the American Psychiatric Association, “the 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. The current edition, DSM-IV-TR, is used by professionals in a wide array of contexts, including psychiatrists and other physicians, psychologists, social workers, nurses, occupational and rehabilitation therapists, and counselors, as well as by clinicians and researchers of many different orientations (e.g., biological, psychodynamic, cognitive, behavioral, interpersonal, family/systems). It is used in both clinical settings (inpatient, outpatient, partial hospital, consultation-liaison, clinic, private practice, and primary care) as well as with community populations. In addition to supplying detailed descriptions of diagnostic criteria, DSM is also a necessary tool for collecting and communicating accurate public health statistics about the diagnosis of psychiatric disorders.”

(http://www.dsm5.org/about/Pages/Default.aspx )

The DSM is currently being revised through a lengthy and labor-intensive process that began in 1999. “Publication of the fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in May 2013 will mark one the most anticipated events in the mental health field. As part of the development process, the preliminary draft revisions to the current diagnostic criteria for psychiatric diagnoses are now available for public review. We thank you for your interest in DSM-5 and hope that you use this opportunity not only to learn more about the proposed changes in DSM-5, but also about its history, its impact, and its developers. Please continue to check this site for updates to criteria and for more information about the development process.”

There has been relatively little coverage of the DSM-5 process in the mainstream media. The few reports have focused on the “medicalization” of a growing number of personality disorders and classification of risky sexual behaviors, as described by Shari Roan in a series of articles in the Los Angeles Times. The process has its fans and critics, even within the field of psychiatry. Dr. Frances Allen is the chairman of the DSM-IV Task Force and is quoted in the Los Angeles Times,

“Allen says the many advances in neuroscience, brain imaging and molecular biology have yielded valuable information about the workings of the human brain but not enough to make psychiatric diagnoses. Thus, he said, there is little to be gained by changing the DSM now.

“The experts are well-meaning — each suggestion made has the goal of identifying patients currently missed,’ Allen said. But, he added, ‘none of the changes can accurately identify patients who are in real need of help from normal people with everyday problems who would be better left alone.”

Many organizations that engage with communities potentially affected by proposed DSM changes have activated their constituencies. For instance, criteria for autism spectrum disorders are being reworked, prompting questions from parents, professionals and advocates.

One major change proposed to the DSM-5 involves the creation of a new set of conditions referred to as Somatic Symptom Disorders. “Among the work group’s recommendations is the proposal to rename this category Somatic Symptom Disorders. Because the current terminology for somatoform disorders is confusing and because somatoform disorders, psychological factors affecting medical condition, and factitious disorders all involve presentation of physical symptoms and/or concern about medical illness, the work group suggests renaming this group of disorders Somatic Symptom Disorders.” While chronic fatigue syndrome (CFS) is not named among the conditions being swept into this category, the criteria for diagnosis of SSD and its subtypes may hinder, rather than help, the response individuals with CFS receive from medical and mental health professionals. It has prompted concerns and action from many within the CFS community.

The CFIDS Association submitted its concerns about the first proposal for Complex Somatic Symptom Disorder on April 1, 2010 and responded to a second opportunity to submit comments on the latest revisions to SSD and new subtypes identifed by the work group on June 14, 2011. Many other organizations and individuals concerned about these changes have submitted comments as well. Advocate Suzy Chapman has collated comments at her site.

The APA has set June 15, 2011 as the deadline for this round of responses to its latest set of proposals. Registration on the DSM-5 site (www.dsm5.org  is required in order to submit comments, but there are no other requirements such as having a professional affiliation or organizational connection.

Letter to DSM-5 June 2011

      CFIDS DSM-5 Statement 061411

Submission by The Rocky Mountain CFS/ME and FM Association

      DSM-5 RMCFA letter[1]

Submission by The National ME/FM Action Network

The National ME/FM Action Network

Lydia E. Neilson, M.S.M. , Founder
Chief Executive Officer

For the attention of the Somatic Symptom Disorders Work Group :

The National ME/FM Action Network works on behalf of Canadians with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Fibromyalgia. Our organization was founded in 1993 and has many accomplishments to its credit. A leading accomplishment was spearheading the development of the Canadian Consensus diagnostic and treatment protocols for ME/CFS and Fibromyalgia. These criteria are receiving strong international support. Another major accomplishment was publishing statistics on these conditions. Our analysis, based on a major Statistics Canada survey, showed that there were 628,500 Canadians diagnosed with one or both of these conditions in 2005 and that they experienced high degrees of disability, disadvantage and unmet needs in comparison with other chronic illness cohorts.

Diagnostic criteria are very important. DMS-5 will be used to determine who qualify for psychiatric services. Criteria are problematic if they result in false negatives (people who do not qualify for services but who would benefit from them) or false positives (people who qualify for services do not benefit from them). We are concerned the proposed new category for Chronic Somatic Syndrome Disorder (CSSD) will result in an unacceptable number of false positives in the ME/FM community.

A fundamental question is how psychiatry can help patients with ME/CFS and Fibromyalgia.

Some psychiatrists have proposed Cognitive Behaviour Therapy as a treatment for Chronic Fatigue Syndrome. A recent UK study examined the benefits of CBT for patients with CFS. Patient groups have pointed out numerous issues around the study design and how study population was selected and would reject the study as badly flawed. However, even taking the study at face value, the study showed that CBT was of minor benefit to patients, akin to the benefits of CBT for other chronic illnesses. CBT does not get to the heart of the illness. ME/CFS and Fibromyalgia are not psychiatric disorders.

Our position on the role of psychiatry is simple and clear. We think that psychiatry should play the same role for ME/CFS and Fibromyalgia patients as it does for patients with other chronic physical illnesses like cancer, diabetes or arthritis. Those patients receive psychiatric support if and only if psychiatric issues are apparent after medical and social supports in place. We would like to refer you to a document entitled “Assessment and Treatment of Patients with ME/CFS; Clinical Guidelines for Psychiatrists” by Dr. Eleanor Stein, a Canadian psychiatrist. This document describes an appropriate role for psychiatrists in assessing and treating ME/CFS, respecting the reality of the illness.

Over the years, we have heard many stories from patients with ME/CFS or Fibromyalgia who went to a doctor for help only to be fobbed off to a psychiatrist because the family doctor did not believe their symptoms or did not know how to help, rather than because the patient needs psychiatric services. This situation does not help patients – it denies their experiences, it undercuts their credibility and it distracts from their real issues. This situation does not help psychiatry either as it is called upon to solve problems that it cannot solve.

The new Complex Somatic Syndrome Disorder category could compound this situation. A patient with ME/CFS or Fibromyalgia would get a diagnosis of CSSD if a doctor believes the patient is overreacting to the illness, even if the patient is actually behaving very rationally. The patient would be labelled with a undeserved, unhelpful and misleading psychiatric label which would make dealing with the core health issues even more difficult than they already are.

The CSSD category could be very harmful to patients with ME/CFS and Fibromyalgia. We ask you to refrain from including CSSD in DMS-5 in the absence of protections to ensure that patients with ME/CFS and Fibromyalgia do not receive false positive diagnoses.

Margaret Parlor
President

NATIONAL ME/FM ACTION NETWORK

512 – 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518
Email: mefmaction@ncf.ca
www.mefmaction.com
Member of www.iacfsme.org

Submission by The Danish ME/CFS Association

The Danish ME/CFS Association would hereby like to comment on the draft proposal of DSM-V.

In Denmark, psychiatrists are already incorrectly using the terms somatoform disorder and functional somatic syndrome as synonyms for ME/CFS, Fibromyalgia, IBS, whiplash, migraine and others. In fact it has been proposed that these illness and 5 others be placed under a single category. We are therefore extremely concerned that the proposed category of Complex Somatic Symptom Disorder could become a catch-all category for these illnesses that will encourage doctors to give a psychiatric diagnosis and thus ignore the biological basis of these diseases.

As a patient group in Europe we wholeheartedly support the comments submitted by the European ME Alliance (EMEA) to the American Psychiatric Association on DSM-V Complex Somatic Symptom Disorders category: http://www.euro-me.org/news-Q22011-003.htm

Three quotes from EMEAs statement that we would like to emphasize are:

‘We are especially concerned about the criteria described in the new category of Complex Somatic Symptom Disorder which seems to imply that anyone who has a chronic or incurable illness with somatic symptoms and ‘misattributes’ their symptoms could be given this label.’

‘ME/CFS could mistakenly be placed in this category if one were to ignore, or be unaware of, 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 and would not serve the patients or the healthcare communities.’

‘We hope and request that the APA listens to patients and avoids creating a category of mental illness that is meaningless.’

On behalf of the Danish ME/CFS Association board,

Sincerely yours,

Rebecca Hansen, chairman
reh@me-cfs.dk
www.me-cfs.dk

Submission by ESME (European Society for Myalgic Encephalomyelitis)

The board of ESME (European Society for Myalgic Encephalomyelitis) wishes to express its concern over the proposed category of Complex Somatic Symptom Disorder.

Myalgic Encephalomyelitis (ME), is a potentially severe and chronic multi-system illness, commonly triggered by a virus infection, of which a key symptom is post-exertional malaise. It has been classified as a neurological condition by the WHO since 1969 and carries the code G93.3. Since the 1980’s, ME has also been called Chronic Fatigue Syndrome and it is under this name, that ME has commonly been mistaken for a somatoform disorder. It is our experience that giving an ME patient a psychological diagnosis of somatoform disorder, or functional somatic syndrome, has severe consequences for the patient, as their biological illness is then ignored. This also leads to patients being treated with psycho-pharmaceuticals, exercise therapy and other inappropriate and potentially harmful treatments.

The parents of children with ME are often blamed for the child’s illness by doctors and psychiatrists who do not understand the biological basis of ME. We feel that the category of Complex Somatic Symptom Disorder would only increase this problem as it takes focus away from the child’s physical symptoms and places them on the reaction to the illness. The diagnosis of Complex Somatic Symptom Disorder can be given if the parents of a young child express:

Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least two of the following are required to meet this criterion:

(1) Disproportionate and persistent concerns about the medical seriousness of one’s symptoms.
(2) High level of health-related anxiety
(3) Excessive time and energy devoted to these symptoms or health concerns

If a doctor or psychiatrist does not understand the biological basis of a disease, it then becomes very difficult, if not impossible, to determine what amount of worry is disproportionate or excessive.

The board of ESME feels that the adoption of the umbrella term, Complex Somatic Symptom Disorders, would increase the risk of ME patients receiving a psychological misdiagnosis, therewith increasing the risk of neglect or direct physical harm to this patient group. We therefore strongly advise against the creation of the vague category, Complex Somatic Symptom Disorders.

Sincerely yours,

The Board of the European Society for ME
post@esme-eu.com
www.esme-eu.com

Submission by the European ME Alliance (EMEA)

European ME Alliance (EMEA) submission to DSM-5 draft proposals Submission – to the American Psychiatric Association on DSM-V Complex Somatic Symptom Disorders category

June 2011

http://www.euro-me.org/news-Q22011-003.htm

The European ME Alliance consists of 11 European national charities/non profit organisations campaigning for better diagnosis and understanding of myalgic encephalomyelitis (ME or ME/CFS) as defined by WHO-ICD-10-G93.3.

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 and its Complex Somatic Symptom Disorders proposal.

This response should be seen against the backdrop of the devastation caused by the misinformation within the medical profession regarding ME/CFS and the promotion of false perceptions about the disease to the public, healthcare authorities and government.

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. It is the patients who must surely be the 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 imply that anyone who has a chronic or incurable illness with somatic symptoms and ‘misattributes’ their symptoms could be given this label.

Who decides when someone misattributes their pain or fatigue?

How are these symptoms measured?

How long and vigorously is a patient allowed to complain about their symptoms before a doctor can decide to investigate further and determine if a headache is a brain tumour or irritable bowel syndrome colon cancer?

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

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

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, or be unaware of, 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 and would not serve the patients or the healthcare communities.

In our experience specialist ME/CFS clinics get as many as 40% of patients referred with a ME/CFS diagnosis who turn out to have other very serious and sometimes fatal illnesses.

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

Parents of children with ME/CFS 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 by having ‘wrong illness beliefs’.

Severely ill grown ups with this disease are denied normal medical care and threatened with being placed in mental hospitals 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.

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 hope and request that the APA listens to patients and avoids creating a category of mental illness that is meaningless.

Yours Sincerely,

The Chairman, Board and Members of the European ME Alliance

www.euro-me.org

PDF version: http://www.euro-me.org/GB/EMEA%20Letter%20to%20APA%20-%20DSM-V.pdf

Membership of EMEA: http://www.euro-me.org/about.htm

Submission by The ME Association (UK)

ME Association submission to the consultation on the revision of the American Diagnostic and Statistical Manual of Mental Disorders

http://www.meassociation.org.uk/?p=6619

June 13, 2011

The ME Association has submitted the following comments to the consultation on the proposed, new American Diagnostic and Statistical Manual of Mental Disorders, otherwise known as the “DSM-5″. Our contribution was officially acknowledged on Sunday (June 12) at 10.52am.

The ME Association is a UK based medical charity that provides information and support for people with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome).

The concerns we express below refer to the proposal to create a new and wide-ranging psychiatric category – Complex Somatic Symptom Disorder (CSSD) – in the next edition of the American Diagnostic and Statistical Manual of Mental Disorders (ie DSM V) and the widespread belief that people with ME and CFS may become included in this new medical terminology.

ME is recognised by the World Health Organisation (in section G93:3 of ICD 10) and by the UK Department of Health as a complex neurological disorder – a fact that is now supported by numerous published research studies.

CFS, which includes a wider group of clinical presentations, is indexed to the WHO neurological classification.

It is not therefore appropriate to use the proposed terminology of CSSD – either by intention or mistake – to describe or classify people with ME or CFS as having somatic presentations of mental health disorders in any other system of disease classification or explanation such as the DSM.

This proposal itself has a number of major flaws, including:

• A very limited and partial scientific rationale with too much reliance on subjective judgements.

• An implied acceptance that diagnoses are always correct.

• An assumption that all that is important in psychological medicine is already known and what remains uncertain can be summarised in one new clinical entity.

Psychological Medicine already attracts a lot of negative criticism and this proposal will only make matters worse.

The APA therefore needs to reflect on its full responsibilities when reviewing a subject area as complex and uncertain as this.

We therefore suggest that you drop CSSD and instead refer to ‘chronic distress that may be related to psychological or physical events or a combination’. This is a term that should lead to empathetic, focused management.

ENDS

Submission by Action for M.E (UK)

On June 1, UK patient organization, Action for M.E., published an item on the DSM-5 proposals on its news pages which can be read here News pages and submitted this response in the DSM-5 public review:

Submission by Action for M.E.

As the largest by far CFS/M.E. charity in the UK, in 2010 Action for M.E. commented on the fifth edition of the American Psychiatric Association’s (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM-5)

We made the points that:

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

2. CFS/M.E. is a long-term and disabling Illness which 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 the view that the illness is physical in origin.

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

Our concern increased considerably on reading the latest draft (18 April 2011) of DSM-5 which could have a profound and detrimental impact on people with M.E. who could so easily be misdiagnosed as having a psychiatric condition when assessed against the proposed criteria.

Submission by IACFS/ME (The International Association for Chronic Fatigue Syndrome/ME) (US based)

Dear Members and Colleagues:

I have submitted the comments below to the DSM-5 Work Group on Somatic Symptom Disorders. We are very concerned about the proposed new diagnosis, Complex Somatic Symptom Disorder, and its potential influence on physicians who see patients with CFS/ME.

Thank you.

Fred

Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org

To the DSM-5 Somatic Symptoms Disorders Work Group:

On behalf of the board of directors and the membership of the International Association for Chronic Fatigue Syndrome (IACFS/ME), 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.

The Work Group’s well-reasoned points about DSM-IV somatoform disorders – that they are little used, confusing, and pejorative – do call for a re-evaluation. The question is: What should replace them? The new inclusive CSSD category attempts to offer a simplified and more inclusive diagnosis that may be more user-friendly to physicians and other health practitioners.

Our major concern is that the logic behind the new CSSD category is not informed by empirical data that directly examines the utility of this diagnosis in medical practice.

As stated by your Work Group: “A key issue is whether the guidelines for CSSD describe a valid construct and can be used reliably. …Predictive validity of most of the diagnostic proposals has not yet been investigated.”

Given the absence of scientific validation of the CSSD diagnosis, the potential for unintended consequences is a serious concern. One such consequence is the possibility of over-diagnosis that may selectively affect patients with illnesses that are already not well understood such as CFS/ME. If the treating practitioner is skeptical about the severity or even existence of CFS/ME, then the new criteria can be used to diagnose CSSD without reference to an underlying illness.

For instance, 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, would allow practitioners skeptical of CFS/ME to diagnosis the illness as an Axis I psychiatric disorder. This new psychological diagnosis may then narrow the physician’s focus and reduce the possibility of more effective management of the CFS/ME illness. Furthermore, the CSSD diagnosis may result in additional stigma for already marginalized patients with CFS/ME.

Over-diagnosis with CSSD may also arise from the broad generality of the new criteria and the absence of clear thresholds for patients to meet the criteria. As with somatization/somatoform disorders, when different criteria are used population prevalence varies from less than 1% for somatization disorder to an astonishing 79% for undifferentiated somatoform disorder (cited from Work Group online document). Arguably, the generality of the criteria for both undifferentiated somatoform disorder and CSSD suggests that CSSD may become a much more common (and potentially misapplied) diagnosis than the somatic symptom disorders that it replaces.

Finally, the CSSD diagnosis will not inform the clinician of CFS/ME-specific issues such as adverse reactions to treatment that are more likely in this hypersensitive population. By contrast, the CFS/ME diagnosis is useful for an array of illness related concerns that will assist the clinician in providing care for these medically under-served patients.

Given the above considerations, we ask that the CSSD diagnosis be omitted from DSM-5. Only when the proper validation studies are done that consider vulnerable populations such as CFS/ME can we know if the use of the CSSD diagnosis has clinical value. In its current form, we believe that the new diagnosis will do more harm than good.

Thank you.

Fred Friedberg

Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org

IACFS/ME
27 N. Wacker Drive, #416
Chicage, Illinois 60606
US

Submission by Dr John H Greensmith, Founder, ME Free For All.org (UK)

Of those people, who have previously submitted contributions about the same matter under review here – including this Research Psychologist and patient diagnosed with M.E. (Myalgic Encephalomyelitis) since 1988 – many will be inclined to write, “as last year” (This was my 2011 submission, Open Letter: Submission about the creation of a new category called “Complex Somatic Symptom Disorder”, for the revised version of The Diagnostic and Statistical Manual for Mental Disorders (DSM-5), by the American Psychiatric Association, 14 April 2010). Some may wonder whether whatever they say and however many others opine the same, will have any significant effect upon the entry finally chosen to appear in the manual of the profession, whose members proposed it.

I will, however, take time, to reinforce some points previously made and endorse those made by others. It is worth mentioning that you might have received many more submissions to take into account if a majority who will be affected by your classification were not too ill, insufficiently articulate, or in too great awe of your authority, to reply.

No individual or organisation has ever suggested that the M.E. component of ME/CFS should be dropped. Even those who appear to sincerely believe that the terms are synonymous and interchangeable appear to be hedging their bets lest a definitive diagnostic test for M.E. is ever discovered. On the contrary, there are some who, individually and, increasingly, corporately, on behalf of people with M.E. are confident that Myalgic Encephalomyelitis is a discrete illness, with an underlying physical cause, which may be defined without the symptom of “fatigue” at all. Some, including me, assert that, furthermore, its bookends, “chronic” and “syndrome” and, therefore, the whole package (CFS), are not only unnecessary but also unhelpful.

The aim of any science is to narrow the field, shorten the odds, increase the probability that a person has the particular condition, in this case the illness M.E. We have been and you propose to continue, travelling in the opposite direction. Even those who do prefer CFS admit, in their publications, that fatigue is “heterogeneous”, “ubiquitous” and “nebulous”. One may wonder what adjectives would make them think it was not such a good idea after all.

If any part of “somatoform” means continuing to hold on to an erroneous belief that one is ill, or is perhaps hypochondriacal, there ought to be evidence of such behaviour before a diagnosis with M.E. and/or that there are benefits of doing so which outweigh any disadvantages. Neither of these is usually true, when most people with M.E. had a good work or school attendance record and conducted the doctor only for perfectly reasonable concerns and, taking for granted no malingering, or faking, which seems unlikely, I don’t know a single M.E. sufferer who is financially better off, as well as being socially isolated and often with shattered relationships.

The other principal purpose of an accurately defined category is for recommending treatments for M.E. (and co-incidentally all other conditions trapped in this chronic fatigue bundle). I am only aware of two treatments, Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET), on offer from the orthodox medical establishment before the charlatans see their chance. None can claim a cure, by which I mean a complete return to their former working and social lives, or even a significant level of recovery without relapse. All have very serious criticisms to answer, especially GET, which, astonishingly, is promoted by those who practise it and by groups representing people with M.E., despite their own evidence showing that it makes a majority worse. The proposed CSSD category would appear to be offering more of these same treatments, which have not reduced the number of people remaining ill with M.E.

Yours sincerely
Dr John H Greensmith
Founder, ME Free For All.org

Submission by The Young ME Sufferers Trust (UK)

PLEASE ENTER OUR COMMENTS BELOW INTO YOUR REVIEW PROCESS

We wish to express concern over your new classification of Complex Somatic Symptom Disorder.

Chronic Fatigue Syndrome has commonly been mistaken for a somataform disorder. There are concerns in the UK that it may now be allocated a place under the umbrella of Complex Somatic Symptom Disorders.

In the UK the term Myalgic Encephalomyelitis has been used for half a century to define a potentially severe and chronic multi-system illness triggered commonly by the enterovirus family, of which a key symptom is post-exertional malaise. This name is still in use by the UK Government alongside CFS (as CFS/ME) and it received a categorisation from the WHO under neurological conditions many years ago, before the term CFS was invented.

Enough confusion has already been caused by the unhelpful invention of the name Chronic Fatigue Syndrome under which ME then became trapped.

Any possibility that classic ME, already subsumed under CFS, could be mistakenly classified by default as a Complex Somatic Symptom Disorder would be nothing short of disastrous. It would also be a scientific error of some magnitude which would surely be best avoided for your own sakes as much as that of the patients.

We would be grateful to receive an acknowledgment of our submission.

Best regards,

Jane Colby FRSA
Executive Director
The Young ME Sufferers Trust

Holder of The Queen’s Award for Voluntary Service:
The MBE for Volunteer Groups

PO Box 4347
Stock
Essex
CM4 9TE
Tel 0845 003 9002
www.tymestrust.org

For submissions by medical, allied health and other professional stakeholders go to Page 2

For submissions by patients and advocates go to Page 3

For submissions by professional bodies go to Page 4

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