Coalition4ME/CFS Puts Out Call For Action on DSM-5 Proposal

June 2, 2011

Posted by Cort Johnson

Coalition4MECFS call for action on DSM-5The 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. 


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.

See Full DSM – 5 position paper here

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

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:


{ 8 comments… read them below or add one }

Carol Edwards June 4, 2011 at 5:38 pm

I hope this comment is read by someone in the psychiatric community. #1 The name Chronic Fatigue Syndrome has always been wrong for this disease. #2 Shame on every psychiatrist who has classified us as mental cases. If you had this disease yourselves you would NOT be putting us down. You have accomplished sending any validity for our sickness back to the stone age. I was a very active person until a virus interupted my life 9 years ago and left me a shell looking out a window to the healthy world. My symptoms are NOT in my mind. They are physical 100%. And to have doctors just look at me thinking I’m nuts infuriates me to no end. Psychiatrists have no business sticking their noses in when they have no idea how we all suffer with this supposed invisible problem. I’m too old now (71) to see your community shot down but there will, I’m sure, come a day when you will be ridiculed sharply for allowing such a horrible fate for those millions of us who are sick to happen. Before the medical community knew anything about MS how were those poor patients treated? Like us because of YOU.
ME/CFS IS REAL and I pray you will all apologize when the truth is discovered.


Frances Flynn Boyd June 5, 2011 at 4:25 am

Superb and to the point. Imagine if the victims too weak, bed-ridden or undiagnosed could speak up, and be included in the millions of victims who have been diagnosed–how many would that be?

If not, what is the medical secret to their “Immunity”?!

Question: Pfizer developed Lyrica for Fibromyalgia–ISN’T CFS associated with FM?!

Thank you Carol Edwards for your profound statements–keep the faith.

Frances Flynn Boyd
Palm Beach Gardens, FL


Don Caskey June 5, 2011 at 12:53 pm

My previous comment earlier today (which was posted on the DSM-5 website) had some typos and statements that were not as clear as I would have liked; please accept this in its place:

Your proposed description for Complex Somatic Symptom Disorder overlaps significantly with known symptoms for ME/CFIDS/CFS. ME/CFIDS/CFS is strongly suspected by experts to have causes that are microbial, genetic, and/or are due to unexplained immune-system-malfunction. While ME/CFIDS/CFS has cognitive-function symptoms, no reputable experts on the illness believe it is primarily a mental illness or that it derives from mental illness. Your CSSD description will confuse physicians further; they already struggle with multiple names for ME/CFIDS/CFS and its diagnosis. The creation of CSSD will encourage doctors to use CSSD as a pigeonhole — relieving their professional confusion by relegating patients to a field in which they have little training, a field that is unlikely to make progress toward a cure, and a field that is ill-served by patients’ insurance coverage: relegating the patient, in other words, to invisibility. Much research into ME/CFIDS/CFS would be misdirected toward CSSD, away from the likely microbial, genetic, or immune system causes of the illness. In summary, your criteria A and C overlap ME/CFIDS/CFS symptoms. And, criterion B says the if a victim of ME/CFIDS/CFS is anxious because she is partly or wholly disabled, is frustrated or preoccupied by the fact that she has a physical illness that the medical community often does not acknowledge, if she dwells on the maddening fact of an illness that is as self-evidently physical as MS or polio, then she must have a mental problem, must have CSSD. This a circular Catch-22 sort of reasoning that is frightening. Please do NOT move forward with the CSSD definition.

Sincerely, Donald G Caskey, educator, school principal, husband of a CFIDS/CFS sufferer.


Cort June 5, 2011 at 7:16 pm

Very succinctly put Donald…Thanks for providing something we can use to form our replies..


Toni Bernhard June 6, 2011 at 5:26 pm

Thanks Cort for providing these instructions. I’m going to go leave a comment right now.

Their reasoning is so flawed: it presumes that medical research is at an end — that if medical science is not advanced enough to pinpoint a cause for a physical illness, it must be psychiatric in origin. How absurd is this? I would think that medical researchers would object vehemently to this move.



Toni Bernhard June 6, 2011 at 6:09 pm

Hello again, Cort. I thought I’d leave the text of my comments since they might aid others in replying.

This proposed disorder, Complex Somatic Symptom Disorder, makes no sense to me. I have two points to make.

Point #1: This proposed disorder presumes that medical science and research has completed its task — that if a person has unexplained medical symptoms that, under Criteria B, he or she is overly concerned about, the symptoms must be somatic in origin. This is absurd. Just because medical science has yet to determine a cause for a physical disorder, condition, or illness does not mean that it’s not physical in origin. It is simply likely to mean that medical science has not advanced to the point of being able to determine what that cause is (as was the case with MS some years ago). If nothing else, this proposal is an insult to the medical research and scientific community.

Point #2 relates to Criteria B:

First, my background. In 2001, I contracted a viral infection that was thought to be acute. Ten years later, I still suffer from flu-like symptoms and am mostly house-bound, often bed-bound. I was forced to retire my beloved career as a law professor at the University of California, Davis. Doctors have not been able to pinpoint a cause for my continued illness although several infectious disease doctors have some working theories (chronic immune system activation, a re-activation of one or more childhood herpes viruses which had been latent prior to the acute 2001 illness). Not knowing what else to write down on forms, doctors have settled on the diagnosis Chronic Fatigue Syndrome.

As for your proposed Criteria B, of course, I’m concerned about the medical seriousness of my symptoms: proposed B(2). These symptoms cost me a career that I loved and that I planned to stay in for 20 more years. As a result of my symptoms, I’m also unable to travel to see my grown children and my young grandchildren. As I said, mostly house-bound, often bed-bound. Isn’t it a sign of mental health to be concerned about the seriousness of symptoms that curtails ones activities to such an extent?

Do I spend excessive time and energy devoted to my symptoms and health concerns?: proposed (B3). I don’t lie in bed and cry about my symptoms (on the contrary, I have written a successful book about learning to live well despite chronic illness). But I do spend time and energy devoted to finding possible treatments to alleviate my symptoms and to improve my functionality.

Thus, it’s likely I’d fit into B(2) and B(3), meaning I’d meet your “two out of three” required for Criteria B. This is patently absurd. I am a happy, well-adjusted person. I just don’t want to be sick, so of course I spend a lot of time trying to find ways to be less sick. Should I be expected not to do that in order to avoid coming under Criteria B?

Please reconsider this poorly thought out proposal.

Thank you for your time,
Toni Bernhard


Chris Sharpham June 11, 2011 at 1:46 am

Hi Cort & all. Aren’t the comments/responses meant to go to the DSM-5 website instead of here? They won’t see these comments unless we tell them specifically to look here. Unless i’ve missed something and they are already directed here via the coalition.

So far on the CSSD page: it looks like there are no comments yet? Or maybe they need approval etc and haven’t been yet? Has anyone else yet left comments there on that page or are you writing via email etc?

I surely have some things to say here I just want to know the best place to put it.



Emily July 12, 2011 at 3:49 pm

I see the deadline for comments has passed already…does anyone know if it is still possible to comment on this disaster or if it is too late? Thanks!


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