IOM Gives ME/CFS a New Name and Definition

Today, The Institute of Medicine proposed a new name and new diagnostic criteria for ME/CFS.

To reflect the condition’s hallmark defining symptom, “postexertional malaise” (still a ridiculous term, in my opinion, that doesn’t come close to describing what happens), the report proposes a new name be adopted: “systemic exertion intolerance disease (SEID),” defined in both adults and children by the following:

image

Reblogged from Occupy CFS:

IOM: Report Card

Posted on February 10, 2015 by Jennie Spotila

It’s here. A new case definition and a new name. It will take some time for me to get through the 300 page report and prepare a more detailed analysis. But based on the press conference and summary, how did the report stack up to my criteria for success?

Post-exertional malaise: This was my drop dead deal-breaker, and the new definition makes PEM the central feature of the disease. Dr. Clayton said that PEM was “the essence of this disorder,” and it is required for diagnosis.

Core features: As I had hoped, the new definition requires only four symptoms for diagnosis: a substantial decrease in function (work, school, social); PEM; unrefreshing sleep; and cognitive dysfunction and/or orthostatic intolerance. These core symptoms also match what Dr. Lenny Jason’s work has shown. At the press conference, Drs. Clayton, Bateman and Rowe all emphasized that this is an evidence-based definition.

Frequency/Severity: Another requirement I was hoping to see. The new definition requires symptoms “persist for at least 6 months and be present at least half the time with moderate, substantial, or severe intensity.”

Name: CFS is out, but so is ME. Citing a need to focus on the key feature of the disease, the committee proposes Systemic Exertion Intolerance Disease. Um, what? Dr. Lenny Jason told David Tuller that the patient community will not like or accept this name. I think he’s probably right about that.

Making the diagnosis: As I hoped, the report provides guidance on how to make the diagnosis, with an algorithm, short list of tests, and clinician materials to be published soon.The committee insists that any healthcare provider can make this diagnosis and start treating patients. I want to read more in the report about how they think this is possible, given the radical under diagnosis we currently face.

No psych: Dr. Clayton was emphatic at the press conference that this disease is not somatization. I’ll be reading the report carefully to see how they address the psychosocial theory.

Where To Next: This is the BIG question. Will HHS accept this name and definition? Who will submit the proposal to create a new code in ICD-10, and what category should it lodge in? Will the name CFS simply be replaced with SEID, without refining the research cohort selection?

Dr. Clayton said that this report gives advocates the “fodder” to “act up.” Will we? Can we find a way to pull together and use the good parts of this report to advance the cause? That is the question that will keep me up tonight.

More reading:

Learning To Live With ME/CFS

N.Y. Times

MedScape

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13 thoughts on “IOM Gives ME/CFS a New Name and Definition

  1. kneillbc says:

    I do not have CFS/ME, but there is one thing that bothers me about this proposed new name. People tend to ‘accept’ and use names that are meaningful, but specific. Diseases that have names that are based on the primary symptom are usually problematic. We don’t call type one diabetes “low blood sugar intolerance”, we don’t call insomnia “rest intolerance”. Even though ‘insomnia’ means “lack of sleep” in Latin, we use the Latin name for a reason. One is a name, the other is a symptom.

    A question for you- what did you mean when you said that “post-exertional malaise” was a “deal breaker”? Is it that it is too ‘non-specific’ of a symptom- I have brutal post-exertional malaise, but I don’t have ME or CFS. In fact, I think I fit all those criteria, but I definitely know I should not be included. Based on that alone, I think it isn’t great, but I’m not sure what you meant.

    How are you feeling? Has the rain been making life hard? I know the mould and mildew is catching up with me, as has the early pollen season.

    Karen

    Liked by 1 person

    • Karen, this post was reblogged from Jennie Spotila at Occupy CFS. She was saying that the new definition had to have PEM as its core feature and that, for her, that was not negotiable.

      I completely agree with you that the name is ludicrous in light of the actual disease. There was a doctor with ME that commented under Miriam Tucker’s Medscape article and suggested the name “Prolonged recovery asthena gravis. Asthenia indicates extreme lack of strength, gravis, the serious nature of this illness, Prolonged recovery is the sine qua non of this illness, the recovery can be days, weeks, or years.” I thought that was better than SEID. Or Dr. Montoya’s Neuroimmune-endocrine disorder, which was bolstered by Dr. Charles Shepherd saying, “I would far prefer a new name that emphasises the neurological and immunological components of ME/CFS.” To me, “exertion intolerance” sounds like something The Onion made up.

      Like

  2. Trisha says:

    New diagnostic criteria would be great but I think the proposed name is terrible. Exertion intolerance…I can see comedians having a field day with that and disease makes it sound too contagious.

    Liked by 1 person

  3. Lindsay says:

    very interesting. i agree with the other commenters that i don’t love the new name – it seems very non-descriptive and could refer to a number of different conditions.

    Liked by 1 person

  4. Jackie says:

    I can’t wait to read more, especially about how they address the psychosomatic stuff that gets thrown at patients!

    Liked by 1 person

  5. Reblogged this on Sunshinebright and commented:
    A to the point report. Thanks.

    Liked by 1 person

  6. bertieandme says:

    Thanks to Jennie for this great summary and to EM for posting.

    The name is simply dreadful and I’d like to bet there’s no way on earth the patient community will accept it.

    In the UK, research has shown that 40% of patients are diagnosed with ME when they don’t actually have it, but have some other disease. I’m not sure how these 4 simplistic diagnostic criteria are going to really define ME patients from others.

    Many diseases (Lyme, POTS, Ehlers-Danlos) have OI, sleep disturbance/unrefreshing sleep and cognitive dysfunction as symptoms, as well as much reduced activity levels with many no longer being able to work full time.

    In these proposed diagnostic criteria, “fatigue unrelieved by rest” + “post exertional malaise” are the only symptoms which separate people with ME from other diseases. IMHO it also needed the characteristic *delayed onset fatigue* of ME (usually 24-72 hours following activity) which to me is crucial. These 3 major symptoms together form the characteristic symptoms of ME and differentiate it from other diseases *coupled with* minor criteria such as intermittent sore throat, OI, alcohol intolerance (no-one I know with ME can tolerate alcohol) etc.

    Of course, if you’re severely affected PEM and delayed onset fatigue are of no relevance as you are bedridden.

    If any reference to a psychiatric bias has been removed this will be GREAT news and a real step forward.

    Jak x

    Liked by 1 person

  7. Jak, I absolutely agree and you’re so right about the delayed response. I’m surprised that didn’t jump out at me immediately. I also think there needs to be a better term for the PEM experienced with ME. I’m sure other illnesses have PEM, but “PEM” with ME is in no way MALAISE. It takes a few paragraphs to describe what happened to my body when I wasn’t aware of what pushing myself would do. Also, I think the immune system abnormalities are critical. Doesn’t everyone have some sort of immune dysfunction. For me, there’s no doubt that viruses and the flu jab broke my immune system and that caused all the nervous system and neurological symptoms.

    Thanks for the comment.X

    Like

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