It's the Name, the NAME, THE NAME!

So it's been a bit frustrating and disheartening for me due to personal circumstances, lately. I was looking to the January Chronic Fatigue Syndrome Advisory Committee meeting to be a justified distraction for a couple of days. But, it brought on more frustration, I hate to say. So, I must purge. And this is the place for me to do so.

On Friday, they revisited a previous recommendation because the committee did not get the response they had hoped for from the secretary/government agency. They were discussing what to do, reword? resend as is? don't sent again?

The recommendation is:
The IOM has acknowledged and identified a distinct medical condition involving systemic exertion intolerance with PEM and universal core criteria.  CFSAC recommends that the disease identified by the IOM be clearly distinguished from other causes of chronic fatigue, such as conditions described by Fukuda et al, 2005 Reeves, Oxford and other forms of chronic fatigue which include patients that do not meet the IOM core criteria.
 
The response from the CDC was:
The IOM diagnostic criteria will be used as the basis for clinical guidance.  Other case definitions may be important to clarify the historical use. . . . Changes in ICD-10-CM codes are made through proposals to the ICD-10-CM Coordination and Maintenance Committee. 
 
The committee wasn't happy with that and wanted to know for sure that Fukuda criteria patients and other people with chronic fatigue will be distinguished from those who fit the IOM criteria. And they wanted to know how this will be done.
 
How indeed can we distinguish those on the CDC website and in conversation/text, and, for that matter, in coding those who have chronic fatigue from those who have the disease of exertion intolerance? Finally, Donna Pearson said it pointedly (paraphrased) "This disease is different from Fukuda or Oxford or chronic fatigue in general. It's distinguishable by exertion intolerance. How can we make it clear that the disease with exertion intolerance is different?"
 
Uhh, maybe call it something different? I know! I know! I know! Let's call it "exertion intolerance disease." (This post may be dripping with sarcasm. I've had my fill lately.)
 
Notice what I found is the definition of (purpose for a) "name":
 
Finally, in the discussion, someone noted that the IOM committee was suggesting the "systemic exertion intolerance disease" name as a way of distinguishing those with the exertion intolerance of the IOM criteria from those with chronic fatigue (with or without other symptoms). 
 
But people may say: "Why don't we just call it 'ME.'" Well, the CFSAC did not accept that recommendation, either. And for good reason. But one main reason I can think of not calling the exertion intolerance disease "myalgic encephalomyelitis" is because myalgia is not in the criteria. Why would you call a disease by pain if pain is not one of the symptoms required? And yes, I know most of us have pain (although I didn't for the first three years). But most of us have fibromyalgia, also. Is the pain of the exertion intolerance disease or fibromyalgia or both? Either way, the main thing we say distinguishes this disease is not reflected in the "ME" name. And nothing is in the criteria about testing for inflammation of the brain by spinal taps (encephalomyelitis). It's not the right name. It doesn't identify the main distinguishing feature: exertion intolerance.
 
The CDC said the website changes will emphasize the new criteria (with exertion intolerance required) but say Fukuda was a formerly used criteria. I absolutely agree with that. Fukuda was intended to define those with our disease, but did so imperfectly. It's now obsolete for diagnosing in a clinical setting. The person either has the IOM criteria disease of exertion intolerance or they have another disease causing the fatigue or they have idiopathic fatigue. No matter what other symptoms they have, if they don't have exertion intolerance, they don't have this disease, the disease that Fukuda tried to identify, but the IOM criteria does better.

Did we really think that the IOM committee was recommending we split up all these symptoms into 3 different disease, each with a separate designation on the CDC website? And since the CFSAC rejected the IOM recommended name? What would we call these three different diseases?
 
ME for one? CFS-with PEM for the other? and CFS-Fukuda for the third?
 
Really?
 
Or maybe we would have ME/CFS-International Criteria, ME/CFS IOM Criteria, ME/CFS Fukuda Criteria, and idiopathic chronic fatigue? And would there be different treatments?
 
This is ludicrous. It adds no clarity for clinicians. They will have to learn three new diseases instead of one. (Taking the assumption most don't even know the disease criteria we had before the IOM.)
 
Let's keep it simple: You either have the IOM criteria with exertion intolerance or you have another fatiguing disease or you have chronic fatigue (possibly with other symptoms) where the disease or cause is not evident yet. Forget Fukuda. It's yesterday. It's ok for historical reference, but we've moved on to better. We know the disease better. It's not a different disease. It's an imperfect attempt to describe our disease. But it has been exposed as faulty.

(I know the IOM committee said they were not intending to replace Fukuda or other criteria, but they contradicted themselves where they said the names of the other criteria, "ME" and "CFS" are inappropriate).
 
Another way to distinguish the exertion intolerance disease from idiopathic chronic fatigue is in the coding. Please, will the IACFS/ME or some other medical professional organization submit a proposal to the CDC statistics department to put in a systemic exertion intolerance disease code so we can do away with "ME" and "ME/CFS" and "CFS" being used to describe the disease that is distinguished not by provable neuroinflammation or pain, distinguished not by chronic fatigue, but distinguished by the exertion intolerance.



Comments

  1. I agree with much of what you have written (particularly the frustration!), but I believe the main reason the name ME keeps getting rejected over and over again is that the powers-that-be do not believe the "encephalomyelitis" part - that is, that the disease is characterized by encephalitis and meningitis.

    As it turns out, in my case the whole name is wholly accurate - muscle pain plus meningitis plus encephalitis - I know about the latter because Dr. Peterson found active HHV-6A and CMV, both neurotropic viruses, in my spinal fluid in the summer of 2009 when I was very sick after having lost Ampligen for 18 months. If those viruses were in my spinal fluid, they were also bathing my brain - and it's no coincidence that I had symptoms commensurate with having encephalomyelitis.

    Turns out that there are many at CDC and NIH that simply refuse to believe I have had long-term viral infections. I have been told twice to my face that my testing didn't matter - in one case, the exact quote (from CDC) was "you people test positive for diseases you don't have." Well. That's one way of not thinking about things you don't want to have to think about.

    I see no problem with using the name ME and the definition the IOM came up with, because historically it makes the most sense. The name ME has been in continuous use since 1955 and has been recognized as applying to the disease that I have. You can always say it may or may not be accompanied by muscle pain (myalgia).

    I also wish more attention would be paid to Ramsay's description of the disease.

    But what frustrates me the most is the dismissal of the biomarkers and viral infections that my doctor (Peterson) and I believe characterize my illness - and coincide with having, or not having, severe symptoms.

    As for CDC's website, aren't we still waiting for them to get rid of the parts where they recommend CBT and GET?

    PS - back in 2003, when a representative from NCHS (the CDC department that overseas ICD-CM codes) came to CFSAC to talk about the upcoming shift to ICD-10-CM (which took a lot longer than they had thought it would!), she stated CFS would be coded at G93.3. Bill Reeves immediately said that wouldn't work, because he HAD to have it coded with "chronic fatigue" - he diagnosed it by first diagnosing chronic fatigue and then narrowing the diagnosis down to chronic fatigue syndrome. The NEXT time NCHS came to visit CFSAC, they had the new code they were going to use - CFS (postviral) would be in G93.3, but CFS (NOS) would be in R53.82. Eventually they dropped the CFS (postviral), and all that was left was R53.82.

    Frustrating, frustrating, frustrating.

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    Replies
    1. Thank you for the comment. Would we advise tests, as in spinal tap, before a person could be diagnosed with ME? This was the reason CFSAC rejected it in May.

      And thank you for the historical on the code. I knew some, but not all you said.

      One other problem I have with "ME" is that it is now tainted by psychs in UK and is no longer distinguished from "CFS." And yes, I get the irony of that.

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    2. Also, I agree we need biomarkers and we do have prospects. We may be close with recent discoveries and the multisite programs for large cohort studies. But we may not be. Way I see it, even if a biomarker is discovered, it will have to explain the exertion intolerance. So the name "SEID" will still be appropriate. We'll just have a diagnostic test instead of symptom criteria.

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