Posts Tagged 'comment'

IOM Meeting Monday May 5th

The 3rd meeting for the IOM Diagnostic Criteria for ME/CFS project is Monday May 5th.

Location: National Academies of Science Building 2101 Constitution Ave NW, Washington, DC 20418 (This is a different location than the January meeting.)

Time: 1pm- 5:30pm (the agenda lists the meeting as lasting until 5:30 though the FAQs lists it as ending earlier).

Webcast link:

Agenda link:

Additional FAQs:

Remember – at any time during the project you can submit comments to the committee. Send comments to:

It might be worth referencing IOM MECFS Study in the subject line. All comments become part of the Public Access File.


Very interesting…..

Another link to the OccupyCFS blog by Ms. Spotila.

This time her post is full of interesting information about who nominated CFSAC members.

The composition of the committee is likely to be indicative of what they focus on and their degree of responsiveness to the ME/CFS community.

We urge you to read the post, think about it and share your thoughts, comments, ideas.





And where are the CFSAC bylaws?



Call to Action re. DSM-5

Call to action – DSM-5 comments needed by June 15, 2012

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is used in the U.S. to categorize mental disorders for patient diagnosis, treatment and insurance. The new version, DSM-5, includes a proposal for Somatic Symptom Disorder (SSD) that will have profound implications for ME/CFS patients. Your input is needed by June 15, 2012 to ensure that the DSM-5 authors understand your concerns.

The SSD proposal:(details in the appendix).

SSD can be diagnosed for any patient that has:

  1. somatic symptoms that are distressing or significantly disrupt life
  2. an excessive concern with the medical seriousness of his or her symptoms
  3. experienced persistent symptoms, typically for at least 6 months

SSD can be applied to patients regardless of whether the symptoms are considered to be medically unexplainable or not. Severity is rated by the count and frequency of somatic symptoms. The “Justification for Criteria – Somatic Symptoms“, issued in May 2011, states that CBT, focused on “the identification and modification of dysfunctional and maladaptive beliefs”, is one of the most promising treatments.

Why this matters to ME/CFS patients

A diagnosis of SSD can be “bolted” onto any patient’s diagnosis. All that is required is for the medical practitioner to decide that the patient is excessively concerned with their somatic symptoms and their health. This is done using highly subjective and difficult to measure criteria for which very few independent reliability studies have been undertaken.

For patients with diseases that are poorly understood and misdiagnosed by the medical community, like ME/CFS, this will be disastrous. Once diagnosed inappropriately with SSD, the implications for diagnosis, treatment, disability and insurance will be profound. 

What you can do:

Please log onto the DSM site by June 15, 2012 and voice your concerns. Also consider encouraging your health care providers to submit comments.

Feel free to draw from the sample letter as you develop your own letter.

How to provide your input:

  1. Register on theDSM-5 site ( to make comments. The “Register Now” link is in the upper right hand corner of the 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 SSD page. It is probably easiest to draft outside and then copy in. (

Thank you to Suzy Chapman of for monitoring DSM and for reviewing an earlier draft of this letter.

Sample Letter to APA – feel free to use for ideas for your own letter

To:         DSM-5 Task Force, Somatic Symptom Disorders Work Group

From:     Mary Dimmock (replace with your name)

Subject:  Response on the Proposal for Somatic Symptom Disorder

Date:      June 2, 2012

I am writing to voice concerns with the proposal for “Somatic Symptom Disorder” (SSD). 

During the second review of the DSM-5, numerous individuals raised significant concerns for the potential misuse and misapplication of the “Complex Somatic Symptom Disorder” (CSSD) and the “Simple Somatic Symptom Disorder” (SSSD) categories. The primary concern raised was the use of subjective and difficult to measure criteria to determine that patients were excessively focused on their symptoms and health concerns. A secondary concern was with how such a diagnosis could affect patient treatment, especially with the APA finding that one of the best treatments for SSD is CBT for “the identification and modification of dysfunctional and maladaptive beliefs about symptoms and disease“ and the suggestion to “limit testing and procedures”(1).

The 2012 version combines CSSD and SSSD into SSD but does nothing to address the earlier concerns for the category to be misused. The lack of objective, reliable criteria for determining that a patient has a disproportionate focus on their health is an insurmountable fatal flaw that can only be remediated by abandoning SSD until objective, reliable criteria with sufficient independent validation are in place.

The misuse of SSD is a major concern for patients suffering from any disease. This proposal would effectively turn a patient’s justified concern for his or her physical health into a mental illness. This is appallingly bad health policy.

But this proposal is especially problematic for patients who suffer from diseases that are not well understood. An example is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a complex neuro-immune disease, which is characterized by many of these somatic symptoms. Despite advances in understanding the biological pathologies behind ME/CFS, there are still many in the medical community that considers this disease to be ‘all in the patient’s head’. Combining this lack of physician understanding with the proposal’s lack of objective, reliable criteria will be disastrous for ME/CFS patients and could directly affect the types of testing and treatment provided to the patient and impact insurance payments. It could also cause a parent to be wrongfully accused of ‘maintaining’ their child’s ‘sick role behavior’.

I urge you to seriously reconsider removing SSD from DSM-5 until studies have demonstrated that it can be objectively, reliably applied.

Mary Dimmock (replace with your name)


  1. Justification for Criteria – Somatic Symptoms”, Published by the American Psychiatric Association, Draft 4/18/2011, ( Validity Propositions 4-18-11.pdf).

Appendix A: Background on DSM-5 Proposal for Somatic Symptom Disorders

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is published by the American Psychiatric Association (APA) and is used in the United States to categorize mental disorders, which is used for patient diagnosis, treatment and insurance. DSM-5 is under development.

The proposal for this third draft of DSM-5 is to fold a number of existing DSM-IV categories into a single new category called “Somatic Symptom Disorder (SSD).” “Somatic” means “bodily” or “of the body.”

For the second draft, in 2011, the proposal had been to have two separate categories, Complex Somatic Symptom Disorder (CSSD) and Simple Somatic Symptom Disorder (SSSD). But the Work Group has now decided to combine the two into SSD. In the process, the criteria for a diagnosis of CSSD have been lowered to accommodate SSSD. The Work Group is also proposing to drop the word “Complex” from the disorder name.

1. Justification for Criteria – Somatic Disorders

( Validity Propositions 4-18-11.pdf)

This document, drafted by the APA in early 2011 discusses somatic disorders as a condition of “cognitive distortion” best treated by anti-depressants plus CBT, which enables the “identification and modification of dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors”. The Justification further recommends ‘interventions with the patient‘s non-psychiatric physician … limiting testing and procedures unless clearly indicated”

Selected quotes include:

The B-type criteria are crucial for a diagnosis of CSSD. These criteria in essence reflect disturbance in thoughts, feelings, and/or behaviors in conjunction with long standing distressing somatic symptoms.”

Treatment interventions are similar in this group of disorders. Cognitive behavior therapy (CBT) and antidepressant medications appear to be the most promising therapeutic approaches… Although several variations of CBT have been employed, they share many elements in common. These include the identification and modification of dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors and promote more effective coping.”

All of these disorders benefit from specific interventions with the patient‘s non-psychiatric physician (e.g. scheduling regular appointments as opposed to prn appointments, limiting testing and procedures unless clearly indicated) (Allen 2002).”

No later version is available so it must be assumed that this still applies to Somatic Disorders in general and to SSD specifically as the replacement for CSSD and SSSD.

2. 2012 Criteria and Rational for DSM-5 Somatic Symptom Disorder

SSD was created by combining the 2011 categories of Complex Somatic Symptom Disorder (CSSD) and Simple Somatic Symptom Disorder (SSSD) into a single category. In order to accommodate merging SSSD into CSSD, the requirement for the B type criteria has been reduced from “at least two’ to “at least one’ from the three “B” cognitions. Additionally, the severity specifiers have been revised.

The current proposal is:

1. Proposed Revision

Criteria A, B, and C must all be fulfilled to make the diagnosis:  

  • Criteria A – Somatic symptoms: One or more somatic symptoms that are distressing and/or result in significant disruption in daily life. 
  • Criteria B – Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns:  At least one of the following must be present.
    • Disproportionate and persistent thoughts about the seriousness of one’s symptoms.
    • Persistently high level of anxiety about health or symptoms
    • Excessive time and energy devoted to these symptoms or health concerns 
  • Criteria C – Chronicity: Although any one symptom may not be continuously present, the state of being symptomatic is persistent (typically >6 months). 

2. Rationale (Selected statements – for the full rationale, see the web site)

The proposed classification for Somatic Symptom Disorders de-emphasizes the central role of medically unexplained symptoms. Instead, it defines disorders on the basis of positive symptoms (distressing somatic symptoms + excessive thoughts, feelings, and behaviors in response to these symptoms).

The group considers that the current DSM-IV somatoform diagnoses … are so flawed that complete restructuring of these diagnoses is required. Change is needed as:

  • These diagnoses are based on “medically unexplained symptoms,” but this term is unreliable, especially in the presence of medical illness. Doctors disagree on the use of the term and patient recall of such symptoms is variable, so reliability of these diagnoses is low.
  • The lack of positive psychological features in the definition of these disorders means they fail to satisfy one of the criteria for a mental disorder.

The new diagnosis of Somatic Symptom Disorder (SSD) is proposed to overcome these problems with relevant DSM-IV diagnoses. The previous posting proposed diagnoses of Complex Somatic Symptom Disorder (CSSD) and Simple Somatic Symptom Disorder (SSSD). In this revision, we have merged the two disorders, recognizing that SSSD is a less severe variant of CSSD. The work group is considering dropping the adjective “complex” from the name of the resulting disorder and is desirous of feedback.

2. Severity

Severity Specifiers(mild, moderate, severe) 

Somatic Symptom Disorder is a disorder characterized by persistency, symptom burden, and excessive or maladaptive response to somatic symptoms. There is a considerable range of severity. Typically, the disorder is more severe when multiple somatic symptoms are present.”

In addition to fulfilling criteria A, B and C, the following metrics may be used to rate severity:

  • Mild: only 1 of the B criteria fulfilled
  • Moderate: 2 or more B criteria fulfilled
  • Severe: 2 or more B criteria fulfilled plus multiple somatic symptoms
During the past SEVEN (7) DAYS how much have you been bothered by….
Not at all A little bit Some-what Quite a bit Very much
1. Stomach or problems going to the toilet? 1 2 3 4 5
2. Pain in your back? 1 2 3 4 5
3. Pain in your arms, legs, or joints 1 2 3 4 5
4. Headaches?      1 2 3 4 5
5. Chest pain or getting out of breath? 1 2 3 4 5
6. Dizziness? 1 2 3 4 5
7. Feeling tired or having low energy? 1 2 3 4 5
8. Trouble sleeping? 1 2 3 4 5

Appendix B: References

  1. Somatic Symptom Disorders, DSM website, (
  2. Justification for Criteria – Somatic Symptoms”, Published by the American Psychiatric Association, Draft 4/18/2011, ( Validity Propositions 4-18-11.pdf). This document does not appear to have an updated version at this time.
  3. Somatic Symptom Disorders”, description published by the American Psychiatric Association, Draft 4/18/2011, Symptom Disorders description April 18, 2011.pdf. This document has not been updated or issued for the third release.
  4. Suzy Chapman’s collation of responses submitted during the second review, which ended in July 2011. – spans multiple pages. Suzy Chapman’s site – – contains a comprehensive history of DSM-5 updates.
  5. Selected submissions from May-July 2011.

Note that while DSM-5 Somatic Symptom Disorders have changed by combing CSSD and SSSD into SSD, the issues raised in these letters still stand

    1. Coalition 4 ME/CFS –
    2. Mass CFIDS –
    3. CFIDS Association –
    4. IACFSME statement – – scroll half way down the page

 Thank you very much Mary for preparing this and making it easy for us to voice our concerns.