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Patients to DHHS: Fix the Broken ME/CFS Case Definitions NOW!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 14, 2013.

  1. Ember

    Ember Senior Member

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    Patient groups could take up Dr. Unger's challenge. In November 2011, she wrote, "Opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities. However, we are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward."

    International ME clinicians and researchers advise, “Remove patients who satisfy the ICC from the broader category of CFS.” A cardinal feature of ME (ICC) is PENE, operationalized in the ME Primer by the test-retest cardiopulmonary exercise protocol.
     
  2. Nielk

    Nielk

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    Here is a comparison of PEM taken from the CCC and PENE from the ICC

    In my opinion they are almost the same. The PENE version goes into more detail.
    They both state that there is physical and cognitive worsening of symptoms. PENE goes more into details as far as the symptoms that could be exacerbated. PEM states that the recovery period is usually 24 hours or longer and PENE goes further in saying that it can be days or weeks.

    I don't think that this PEM/PENE issue is what differentiates the CCC from the ICC. The main difference that I see in both criteria is that the ICC does not require the six months of feeling ill in order to get a diagnosis and that it demands a 50% in reduction of previous level of activity. It's this latter that really has the largest impact. Is this just a case of severity? I actually struggle with this definition. What other illness defines it's patient population by the severity of the symptoms? If my migraine headache pain is a 4 on a pain level of 1 to 10, does that mean that it's not a migraine? Furthermore, by it's nature, this illness is very cyclical. I have had periods when I have been bed bound for months and then at other times, I'm able to go out shopping for an hour. Do I suffer from ME part time?
     
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  3. Ember

    Ember Senior Member

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    You've left out the introductory statement to the definition of PENE: "This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions." Here's how Dr. Peterson introduced the ICC:
    The International Consensus Panel considers 'malaise' to be an inaccurate and inadequate word for the pathological low-threshold fatigability and postexertional symptom flare characteristic of ME:
    How is PEM operationalized in the CCC?

    Fatigue is criterial in the CCC, by the way: "By definition, the patient's activity level is reduced by approximately 50% or more." Notice, by contrast, the descriptions of severity in the ME Primer's operational notes for PENE:
     
  4. Nielk

    Nielk

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    This from the CCC - Clinical Case Definition for Medical Practitioners


    This too addresses the pathophysiology.
     
  5. Ember

    Ember Senior Member

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    I'm not sure what point you're making. The CCC were used as a starting point. Dr. Peterson, one of the authors of the CCC, advises clinicians to read the ICC because it emphasizes the presumed pathogenesis underlying the symptoms.
     
  6. Nielk

    Nielk

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    The only reason that I bring up the similarities is because you have voiced your objection to the letter (which is the subject of this thread) calling for the DHHS to start using the CCC criteria. Even though I agree that the ICC is more current and goes into more detail, I don't feel like the difference is so great as to being so upset about using the CCC in the interim.
     
  7. Bob

    Bob

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    Beth Unger talks about a lot of the issues discussed in this thread, at the latest CFSAC meeting, in this video:

    www.youtube.com/watch?v=VJ7VqYJTsWI&feature=share&list=PLrl7E8KABz1FGfzllYcomOoI9agz8-6QL



    (She actually says some things that suggests she does have some insight into some of the issues that we've been discussing. She even talks about 'post-exertional relapse' or 'post-exertional exacerbation' possibly being a better description than 'post-exertional malaise'.)
     
  8. Ember

    Ember Senior Member

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    The differences between the CCC and the ICC are significant both for clinical and research purposes, and I'm not sure why you would want to trivialise them. But the letter to DHHS did more than demand the use of the CCC. It also demanded that the CCC be called ME and that CFS be collapsed as a diagnosis. And it used ICC sources in support of this agenda.
     
  9. Bob

    Bob

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    Ember, you were more than happy with the CCC once, and in fact you were promoting it as the best 'ME' diagnostic criteria to use. Sure, times have moved on, and the ICC has now been developed, but it's interesting that you are now adamantly promoting the ICC, and dismissing the CCC as a 'CFS' criteria. Were you wrong in the past, when you were promoting the CCC as an 'ME' criteria? What's changed about 'ME' that the CCC once described the illness, but no longer describes it?
     
  10. Bob

    Bob

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  11. Ember

    Ember Senior Member

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    Please, Bob, if you're going to claim that I was “heavily and inflexibly” promoting the CCC as the best 'ME' diagnosis to use, then you must quote me. Otherwise I'll surely take offence at your comment. I believe that when I preferred the CCC to other definitions, it was then the best that we had.

    Was I wrong in the past when I described the CCC as an 'ME' criteria? Yes and no. I was following the best guidance that we had at the time. What has changed? The ME Primer was published last October with its recommendation that patients who fulfill the ICC should be removed from the CCC and that those who do not should remain in the more encompassing CFS classification.

    A year ago, we needed clarification concerning the relationship between the ICC and other case definitions, particularly Fukuda. I took steps to get that clarification. Having consulted with the experts, I accept their consensus statement. Immediately after the ME Primer was published, I posted this comment:
    It doesn't serve us to ignore expert guidance.
     
  12. Nielk

    Nielk

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    I have not seen any published remarks by the experts stating that they are against this request for DHHS to start using the CCC criteria.
     
  13. Ember

    Ember Senior Member

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    Given that no communication was addressed to the experts concerning the letter to DHHS, why would you expect a response?
     
  14. Bob

    Bob

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    Ember, I've removed the words which you find offensive. But I'm not sure why you've taken offence.
     
  15. Ember

    Ember Senior Member

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    I don't remember preferring the CCC to the ICC. Can you please clarify your remark?
     
  16. Bob

    Bob

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    I didn't say that you preferred the CCC to the ICC. You used to promote the CCC as an 'ME' criteria, along with providing evidence as to why it was not a 'CFS' criteria. I remember you being forthright about that. Now you say that the CCC is absolutely a 'CFS' criteria. So your position has reversed. Does this mean that you view 'ME' as a different disease than you did previously?
     
  17. Ember

    Ember Senior Member

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    If you're referring to a time before the ICC were published, then your reference predates the publication of Dr. Carruthers' presentation to the Ottawa conference by a year. Can you provide any quotation?

    If you're not saying that I preferred the CCC to the ICC, then I don't know how to interpret your comment, “You were promoting [the CCC] as the best 'ME' diagnostic criteria to use.”

    In response to your question about what has changed, I've already indicated above that the International Consensus Panel recommended last October that patients who fulfill ICC should be removed from the CCC; those who do not would remain in the more encompassing CFS classification. Once emptied of ME patients, the CCC defines CFS.
     
  18. Bob

    Bob

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    Maybe you didn't promote it as the 'best' ME criteria to use, but you did promote it as an 'ME' diagnostic criteria, and not a 'CFS' criteria.

    I'd like to know what new evidence there is, apart from the consensus document, that indicates that the CCC no longer diagnoses for 'ME', but now diagnoses for 'CFS'? (e.g. why has the nature of 'ME' changed over time? Has certain new evidence emerged, or have the goal posts moved arbitrarily?)

    Interestingly, you provided research evidence to support your claim that the CCC separates ME patients from CFS patients (see below.) Has this research been superseded with new evidence to the contrary?

     
  19. Bob

    Bob

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    I don't know if you used to promote the CCC before the ICC were published. I had assumed that was the case, but perhaps it was only after the ICC were published.

    Below, I've included some of your old posts (posted after the ICC had been published) in which you promote the CCC as an 'ME' diagnostic criteria, exclusionary of 'CFS' patients...

     
  20. Bob

    Bob

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    Firestormm, for your interest, in case you haven't seen it before, a study of Post Exertional Malaise, with 22 patients and 22 controls...

    Pain inhibition and postexertional malaise in myalgic encephalomyelitis⁄chronic fatigue syndrome: An experimental study.
    Van Oosterwijck J, Nijs J, Meeus M, Lefever I, Huybrechts L, Lambrecht L, Paul L.
    J Intern Med. 2010 Sep;268(3):265-78.
    doi: 10.1111/j.1365-2796.2010.02228.x.
    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2010.02228.x/pdf

    Results.
    In patients with ME/CFS, pain thresholds decreased following both types of exercise, whereas they increased in healthy subjects. This was accompanied by a worsening of the ME/CFS symptom complex post-exercise.

    Conclusions.
    These observations indicate the presence of abnormal central pain processing during exercise in patients with ME/CFS and demonstrate that both submaximal exercise and self-paced, physiologically limited exercise trigger postexertional malaise in these patients.



    And a gene expression study with 48 patients with CFS only, or CFS with comorbid FM, 18 patients with FM that did not meet criteria for CFS, and 49 healthy controls...

    Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome.
    Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, Light KC.
    J Intern Med. 2012 Jan;271(1):64-81.
    doi: 10.1111/j.1365-2796.2011.02405.x. Epub 2011 Jul 13.
    http://www.ncbi.nlm.nih.gov/pubmed/21615807

    Conclusions.
    At least two subgroups of patients with CFS can be identified by gene expression changes following exercise. The larger subgroup showed increases in mRNA for sensory and adrenergic receptors and a cytokine. The smaller subgroup contained most of the patients with CFS with orthostatic intolerance, showed no postexercise increases in any gene and was defined by decreases in mRNA for α-2A. FM-only patients can be identified by baseline increases in three genes. Postexercise increases for four genes meet published criteria as an objective biomarker for CFS and could be useful in guiding treatment selection for different subgroups.



    More research needs to be done, but there is research into Post Exertional Malaise.
     
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