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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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    I'll provide references for you, Mark. But it's late here, so I'll leave off for now.

    As an aside, you write, “You know as well as I do that it's an artificial fatiguing construct that lumps patients with different conditions into one un-researchable bucket, and that the name has negative implications for perception of those so labelled. That's why you want out of it.” Please in the future do me the courtesy of asking rather than assuming that you know my motivation.
  2. Mark

    Mark Acting CEO

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    I'm sure we both have.

    As I've said, I pass that over to medfeb. She's been at CFSAC (and on the way there and back) so that's why you don't have your answer yet. As I've mentioned, there have been physicians and other medical professionals involved in the drafting, as representatives of their organizations, and experienced ME/CFS advocates have signed it, as you can see from the signatories list. I'm assuming your question is asking who was consulted who is not on the list of signatories, and that's what I'm waiting for medfeb to answer.


    Well, your previous post, at least, doesn't seem to me to have any argument other than an appeal to authority (the authority of the ICC panel). I've made quite a lot of arguments that don't appeal to authority. Citing references is not the same as appeal to authority; citing references is typically backing up an argument with evidence, which is a very different thing.

    Thanks: I guess the main ones would be
    - that the ICC panel request that CCC now be considered a CFS definition,
    - that the ICC panel disagree with the dismantling of CFS
    - that the ICC panel don't believe the CCC is good enough to help the existing scientific understanding to be developed into clear and demonstrable biomarkers

    (more accurately, you said the last two are inconsistent with the view of the panel, but I don't understand why).
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  3. Mark

    Mark Acting CEO

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    Fair enough, I was assuming all of that, and the last sentence in particular was hasty shorthand; more accurately I'm assuming that's why you want ME patients out of that bucket. I'd also guess that you'd probably put it the other way round and say that you want ME patients in an appropriate (and homogeneous) bucket, but again you're right that's an assumption. I'd be interested to know if any part of those assumptions is incorrect, so please do correct me if I'm wrong on any of that...though I do appreciate this conversation is turning into a bit of a marathon for us both so no hurry from my POV.
  4. taniaaust1

    taniaaust1 Senior Member

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    Hi Ember, I agree completely with you that the ME-ICC best serves the needs of the patients but in reality unfortunately things take a long time to become accepted in medicine. I remember reading one study in which it was found that new scientific findings took (it was a figure) between 13-15 years before they hit mainstream.

    I agree that we shouldnt have to wait but unfortunately we are currently in a very unfair biased world. At least if things did go with the Canadian consensus defination, at least then ME would be being studied even if it is still being called CFS. We need studies of this patient group more then anything, its even more important then whatever its called.

    It's there and will always be there for future use. Maybe thou with some serious study of the canadian consensus patient group even that ME ICC in the next 5 years or so may be behind times when new findings are made (that's if we can get things going forward and be using far better defintions for study).

    I dont think anyone who has ME is going to stop pushing towards the direction of the ICC while its relevent even if it may seem to you that many of us are pushing in a different direction right now. (I see it more like walking UP a winding mountain rather then trying to take a much harder maybe impossible path straight up to the goal).
    Mark and snowathlete like this.
  5. taniaaust1

    taniaaust1 Senior Member

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    Ember have you got a link which specifically says that? Id personally think they still consider many or maybe most who fit the CCC would also would fit the ME ICC defination.

    While people arent being taken out of the CCC by having ICC being used (as is currently the case), that means all of the ICC group will be still sitting in the CCC which would make it "mostly" ME still. (this situation would only change if the ICC people got removed from the CCC group and if the ICC says to count the ICC as a CFS defination, they would of been refering to AFTER the ME people had been removed from the group using the ICC definition).

    It would make sense thou to call the CCC a CFS defintion IF all the ME people had been removed from that defination by the ICC if it was properly accepted but as it hasnt.. this means the CCC is mostly ME people.

    edit.. lol Mark beat me too it, I hadnt seen that he'd asked this question.
  6. Ember

    Ember Senior Member

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    I wouldn't compare this initiative to walking up a winding mountain, Tania. I think I'd compare it instead to a dead end! Expecting the American government to adopt outmoded Canadian criteria seems bizarre to me. (I say that as a Canadian.) There's something sadly surreal about this initiative. The patients are out of step (again) with the experts.
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  7. Ember

    Ember Senior Member

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    Can you explain how medical insurance, benefits, etc. will be maintained once the CFS diagnosis is dismantled? I can't imagine DHHS accepting these marching orders:
    How long will it take to conduct the additional studies needed to understand these conditions and establish more appropriate names and definitions? What will happen to these CFS patients in the interim?

    I don't find there to be any medical experts on the boards of these organizations. Dr. Jason may have been consulted, but he's neither a medical nor a policy expert.
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  8. Ember

    Ember Senior Member

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    I've had to repeat myself with some of the quotations that I've provided here, Mark.

    I quoted the International Consensus Panel earlier in this thread (post #27), indicating that the ICC panel requests that the CCC be considered a CFS definition: “Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.”

    That statement, published last October, clarified the original ME-ICC recommendation that ME patients should be removed from the CFS criteria. In the same post, I quoted Invest in ME:
    I asked in another post (post #32) whether prematurely dismantling CFS wouldn't be inconsistent with the International Consensus Panel's implementation plan: “The panel is not dismissing the broad components of fatiguing illnesses, but rather the ICC are a refinement of patient stratification. As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.”

    As you know, the CCC is a clinical case definition. The ME-ICC, by contrast, was written by a panel balanced between clinicians and researchers. Dr. Carruthers explained the ICC research rationale during his September 2011 presentation in Ottawa:
    The ME-ICC acknowledges its debt to the CCC: “The Canadian Consensus Criteria were used as a starting point, but significant changes were made.” We've discussed in this thread some of those changes, including the replacing of PEM with PENE, along with its 2 consecutive day exercise stress test. “The International Consensus Criteria (Table 1) identify the unique and distinctive characteristic patterns of symptom clusters of ME:”
    The ME-ICC concludes, “The compulsory critical criteria allow comparable data to be collected in various locations and may assist in developing consistent biomarkers and further insights into the mechanism and aetiology of myalgic encephalomyelitis.”

    Dr. Broderick submitted the Panel's “Response to 'A controversial consensus'” in December 2011:
    Dr. Carruthers' article on the ICC, published in the context of last year's Invest in ME Conference, sounded an optimistic note: “We can finally search for specifically directed remedies. This is the way towards scientific progress after what has been a long delay, indeed a paradigm war- not arguments between results but between opposing assumptions made before beginning observations.”

    As a replacement for the CCC, the ICC is intended by its authors to meet an urgent clinical and research need: “We all hope the International Consensus Criteria will improve recognition of Myalgic Encephalomyelitis, promote consistency in diagnosis internationally, and lead to appropriate treatment in a timely fashion.”
  9. TheChronicSituation

    TheChronicSituation

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    I agree that the current situation is a bit of a mess, but I also think it is necessary to proceed with caution. CFS is an unsatisfactory title, but ME is worse. The "E" refers to Encephalomyelitis, which is a very specific term that means "swelling of the brain and spinal cord". Has anyone here ever had tests that show this particular symptom? I doubt it. ME is the term that is meaningless.
    By coincidence, I have just written a blog post on this very topic...
    http://thedamnchronicsituation.blogspot.ie/2013/05/whats-in-name-me-or-cfs.html
  10. Ember

    Ember Senior Member

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    You take exception to my having described ME/CFS as a “fatiguing syndrome.” But don't think that my choice of words follows simply from ICC authors' having classified the syndrome as CFS. Look instead at the prominence given to fatigue in the CCC definition itself: (1) fatigue, (2) post-exertional malaise and/or fatigue, (3) sleep dysfunction, (4) pain, (5) neurological/cognitive manifestations, (6) autonomic / neuroendocrine / immune manifestations, and (7) at least six months of illness.

    In the ICC, neuroimmune exhaustion is given prominence: (1) PENE, (2) neuorological impairments, (3) immune, gastro-intestinal & genitourinary impairments, and (4) energy metabolism/ion transportation impairments. The ICC represents much more than a change in terminology. It completes a paradigm shift mandating the separation of ME from CFS.

    I find it odd that the psychologists, Drs. Jason and Friedberg, support the CCC with its greater emphasis on fatigue, while criticizing the ICC for selecting psychiatric disorders. (Unlike the CCC, the ICC clearly excludes primary psychiatric disorders and somatoform disorder.) The reason that they've given for their criticism is that the ICC includes too many symptoms. But by my count, the ICC requires fewer symptoms than the CCC. I wonder whether the CCC isn't favoured by them instead for the same reasons that the IACFS/ME has called its journal Fatigue.
  11. Ember

    Ember Senior Member

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    After two weeks of asking, I have to assume that no answers to my questions about the joint letter will be forthcoming. If I can't get my questions answered about either the process or the content, why should I assume that the early signators to the letter were any better informed? It isn't enough to expect someone else to have asked the questions. And it's undignified for you to be left holding the bag, having to write, “I think that's why the group settled on the CCC.”

    The joint letter demands a full and open partnership from DHHS, but the initiative doesn't provide an open partnership itself. It doesn't represent a consensus among patients. Jill McLaughlin presented this dissenting patient view in her testimony to CFSAC. Neither does the initiative represent a coming together of the patients and the experts. It misses a prime opportunity.
  12. Nielk

    Nielk

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    I find it interesting that the following are authors of both; the CCC and the ICC

    Bruce M. Carruthers, MD, CM, FRCP(C)
    Kenny L. De Meirleir, MD, PhDNancy G.
    Klimas, MDA. C.
    Peter Powles, MRACP, FRACP, FRCP(C), ABSM
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  13. Ember

    Ember Senior Member

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    Add Marj van de Sande. In what way interesting?
  14. Nielk

    Nielk

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    This is what it says for PENE in the ICC

    A. Post-Exertional Neuroimmune Exhaustion (PENE penʾ-e)

    The bolds are mine to point out that even within the PENE characteristics, there is room for physical fatiguing symptoms. That is why I am surprised when proponents of the ME only diagnosis say that ME has nothing to do with fatigue. I agree that it is much more than...but then so is CFS with the CCC criteria.
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  15. Nielk

    Nielk

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    Interesting in that I don't feel that the CCC and the ICC are describing two distinct illnesses. I feel that the ICC elaborates on the CCC.
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  16. Ember

    Ember Senior Member

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    I hope that you're not quoting me as saying that ME has nothing to do with fatigue. I'm not aware of ever having said that. I quoted Dr. Carruthers above in post #88 describing PENE as "chronic fatigue of this clearly bio-pathological origin."
  17. Ember

    Ember Senior Member

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    Pointing out overlap between the CCC and ICC panels doesn't prove that the ICC “elaborates on” the CCC. The authors of the ICC themselves explain that the CCC "were used as a starting point, but significant changes were made." I've heard the relationship between the two definitions described as an evolution. The CCC is a transitional definition in what amounts to a paradigm shift.
  18. Nielk

    Nielk

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    I was reading Jill's testimony where she states:


    I think there is a fallacy of equating Chronic Fatigue with the Chronic Fatigue Syndrome criteria of CCC.
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  19. Ember

    Ember Senior Member

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    Describing the relationship between CFS and CF is difficult at this stage. These two statements by the International Consensus Panel point to that difficulty:

    “Whether patients with less severe conditions represent a continuum, faulty diagnosis or different disease entities can only be determined by future studies;”

    “As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.”
  20. medfeb

    medfeb Senior Member

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    Hi Ember
    Sorry but as Mark says, I have been away. I will need to read the thread for context and try to answer your questions as quickly as I can
    Mry

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