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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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First IOM meeting scheduled - Jan 27-28

Discussion in 'Institute of Medicine (IOM) Government Contract' started by medfeb, Dec 26, 2013.

  1. medfeb

    medfeb Senior Member

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    Hi

    The IOM sent out an email message today announcing the first meeting of the IOM Committee for ME/CFS Diagnostic Criteria. The meeting will be held in Washington on Jan 27-28.

    The full text of their email message was:
    Open Session for the IOM ME/CFS Study - January 27, 2014

    The first meeting of the Institute of Medicine committee on Diagnostic Criteria for ME/CFS will be held January 27-28, 2014 in Washington, D.C. On the afternoon of January 27, the committee will hold an information-gathering session that will be open to the public. Interested individuals may attend the open session in person at the Keck Center of the National Academies or virtually via webcast or web conference.

    This open session is one of the many processes that the committee will use to gather information and assemble evidence that it will examine and discuss in the course of making its findings, conclusions, and recommendations. The objectives for the committee during this open session are to clarify the scope of the charge (as outlined in the Statement of Task) with the study sponsors; learn more about separate yet relevant research efforts in the field of ME/CFS; and to seek input from patients, caregivers, health care professionals, and other stakeholders.

    An agenda with information on the speakers for the session and the public comment period is being finalized. The agenda and registration information will be distributed via the listserv and posted on this webpage as it is available.

    One note I bolded the statement that one of the meeting objectives is to get HHS, as sponsor, to clarify the scope of the charge.

    I'm assuming but not sure that this relates to the question on what scope of disease these new criteria are intended to describe - that described by CC/ME-ICC or that described by the broader CFS definitions. Both Dr. Lee of HHS and Kate Meck of IOM have said that the scope of disease had not been decided yet and Ms. Meck said that HHS would be asked to clarify this at the first meeting.
  2. Ember

    Ember Senior Member

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    Will the IOM committee endorse the International Consensus Panel of experts' recommendation that ME patients satisfying the ICC should be removed from the broader CFS category?

    In 2011, Dr Unger 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."
    taniaaust1 likes this.
  3. alex3619

    alex3619 Senior Member

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    I wish @Ember. However we have a consensus on CCC at a minimum and its ignored, but I hope the panel can come up with support for the ICC. Wouldn't it be deliciously ironic (though very unlikely) that in ignoring the CCC the IOM and HHS were presented with the ICC instead? Score one for us, but its only fantasy at this point.

    The scope is not defined? What? I knew it was vague, but claiming its not defined yet is a farce! It means they called for the study without having more than a vague idea about what it was they were studying, though this really isn't a surprise. It probably also means the contract is a shambles, so no wonder they don't want to show it to us.

    However there is opportunity here. If its not defined then maybe our real experts can sway the scope, and that would have a real impact on the outcome.
  4. Ember

    Ember Senior Member

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    Secretary Sebelius has responded:
    Then shouldn't the IOM committee consider removing ME patients from the broader category of CFS?
    Last edited: Dec 27, 2013
  5. barbc56

    barbc56 Senior Member

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    Is it being ignored or do they not want to go in with any preconceived notions?
    Izola likes this.
  6. WillowJ

    WillowJ Senior Member

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    This provides an important opportunity for us and for the experts to speak out.
  7. Ember

    Ember Senior Member

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    Words matter, so those who speak out will risk eliciting the kind of response that Dr. Unger gave in 2011:
    Unfortunately, many will use the name that they prefer regardless of its definition.
    beaker likes this.
  8. alex3619

    alex3619 Senior Member

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    And they will use different definitions, there are so very many.
    beaker and WillowJ like this.
  9. Nielk

    Nielk

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    I am so glad though that HHS has spent a million dollars to get Drs. Alegria, Ganiats, Mulrow, Shelanski, Cleeland, Clayton and Diamond to the panel in order to sort all this out.:confused::mad::jaw-drop::grumpy:
    Izola, leela and justinreilly like this.
  10. Ember

    Ember Senior Member

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    Those opposing the IOM study demand the interim adoption of the hybrid CCC (ME/CFS) definition now. How will those engaging the IOM study, set to consider recent scientific advances, address the scope of disease without demanding that ME patients be removed from the broader category of CFS?
    Last edited: Dec 28, 2013
  11. medfeb

    medfeb Senior Member

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    HHS rejected CCC because it was too old and they want IOM to consider more recent evidence. But the irony of that position is that at the same time, HHS has questioned the importance of PEM/PENE and Snell's evidence around CPET. If that is not accepted, I struggle to see what other evidence will be accepted.

    Ember, I don't know of any patient or patient advocate who wants to see the disease described by the CCC/ME-ICC continue to be considered part of the broader set of fatiguing conditions that meet various CFS criteria. The scope of disease is important to all of us, regardless of the tactics each of us has taken toward the IOM, and I think we all need to continue to demand that it be separated out.

    Alex, If its really not defined and not just an issue of lack of clarity in the contract, then I agree. And any patients who speaks at the IOM meeting can also speak to this. But I continue to be worried given statements by HHS in the past and about the IOM contract.

    I posted my feedback to the IOM here
    Last edited: Dec 27, 2013
  12. WillowJ

    WillowJ Senior Member

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    People need to be clear about what they mean. "ME is not CFS" is not a clear message because it's not readily apparent what "ME" or "CFS" mean. They do not mean the same thing in all contexts or to every person, or even necessarily to the same person in different contexts.

    If we mean "the case definitions select different types of patients and are prone to misdiagnosis of a variety of diseases both physical and psychiatric, with the broader ones generally having the most problems", we should say that.

    If we mean "fatigue is a symptom which is found in many different diseases, and doesn't define ME, a supposed syndrome called CFS, or any other particular condition", we should say that (and people do, e.g. "Fatigue is not a disease" is a much more clear slogan)
    Last edited: Dec 29, 2013
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  13. Ember

    Ember Senior Member

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    I didn't mean to suggest that the scope of disease isn't important to all of us. But I haven't seen any statement by the experts recommending that ME/CFS patients be removed from the broader category of CFS.
  14. medfeb

    medfeb Senior Member

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    WillowJ, I couldn't agree more. Words matter, especially here where the labels confuse more than they clarify.

    What I would say is closer to your first point - the different case definitions encompass a range of different diseases and patient cohorts - both medical and psychological. This is especially true of the broader ones that do not require that patients have the hallmark criteria like PEM/PENE to be given a diagnosis.
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  15. Ember

    Ember Senior Member

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    The ME Primer is clear about removing ME patients from the broader category of CFS:
    By what definition of ME should such patients remain under the CFS umbrella?
    Last edited: Dec 27, 2013
    Liz Willow likes this.
  16. Andrew

    Andrew Senior Member

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    I feel like the date of my execution has just been set.
    Izola likes this.
  17. Ember

    Ember Senior Member

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    The International Consensus Panel equally recommends that ME patients should be removed from the 2007 NICE Clinical Guidelines for CFS/ME, by the way: “Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.”
    Izola, taniaaust1 and alex3619 like this.
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Ember, I understand that the ME-ICC states that ME should be removed from "CFS", while "CFS" is left to stand, but why should "CFS" be left to stand since it would be just Idiopathic CF at that point? Leaving the term "CFS" out there, redefined as ICF will create enormous confusion for many years.

    It's muddying and conflation of "CFS" with ICF which is exactly the strategy that the bad guys have used to oppress us all these years.

    They are expert at using confusion to crush us, and that's exactly what they will continue to be able to do if "CFS" is left out there and not scrapped. "CFS" will officially be ICF and they will continue to use "ME/CFS" to then confuse ME and ICF! They're not going to just leave us alone and let us be considered a real medical disease called ME, that's been the whole point of what they've been doing to us for 30 years.

    ME-ICC says clarity is important, but it wimps out and then says it isn't challenging "CFS" as a name for ICF, which is crazy. It's just scientists and doctors wimping out and not insisting on clarity. It's so good to see them take a real stand in the 50 expert letter; I really wish they had done so with regard to "CFS" in ME-ICC.

    ME should be 'separated out', of course that's what we are all fighting for. but "CFS" has to be put in the garbage can, or it will come back to haunt us for a long, long time.

    If it's ME, call it "ME"; and If it's ICF, just call it "ICF" (no "CFS" at all, much less as a name for ICF)
    Last edited: Dec 28, 2013
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  19. medfeb

    medfeb Senior Member

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    Ember,

    You are correct about that statement in the ME-ICC and also that the CCC did not make such a statement.

    But the recent letter from the 50 experts called for the adoption of the CCC because the CCC better describes the disease than Fukuda, and "requires the symptom of post-exertional malaise (PEM), which researchers, clinicians, and patients consider a hallmark of the disease, and which is not a mandatory symptom under the Fukuda definition."

    The only way to adopt CCC for the group of patients with PEM is to split Fukuda into two groups - those without PEM and those with PEM. So while they didn't explicitly state that patients that met CCC should be pulled out of the broader "CFS" criteria (at least Fukuda) in the way that the ME-ICC does, their recommendation requires it.

    Regarding Justin's point about "CFS" being equal to "ME" plus "CF" - Using data mining techniques with immune markers and functional status, Maes showed that he could distinguish three groups - Fukuda with PEM, Fukuda without PEM and chronic fatigue. Put another way, Fukuda contains more than just patients that meet CCC/ME-ICC and those with chronic fatigue. Those who did not have PEM did have elevated levels of immune markers although not as high as those patients with PEM. The term "CFS" as a pathological entity may have swept up more than just the the symptom of chronic fatigue and the disease described by ME-ICC/CCC.
    Maes, M., et al., Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), and Chronic Fatigue (CF) are distinguished accurately: Results of supervised.... Psychiatry Research (2012), http://dx.doi.org/10.1016/j.psychres.2012.03.031http://www.ncbi.nlm.nih.gov/pubmed/22521895

    But that only emphasizes the point. "CFS" is a man-made clinical entity of diverse conditions linked together by the symptom of chronic fatigue and whether that fatigue is medically unexplained or not. I don't know of any publication that provides the scientific basis or rationale for considering all of these diverse conditions to be part of a single clinical entity - for instance, there is no proof that they all share a biological pathology. As an entity, it doesn't advance the science and certainly has not advanced clinical care. In fact, I think its fair to say that lumping these diverse conditions together under the "CFS" umbrella ensures that they will remain medically unexplained.

    I agree with Justin that as a clinical entity, "CFS" needs to go and if there are other diseases inside of "CFS", they need to be investigated separately for the disease they are.
    Bob, justinreilly and Delia like this.
  20. Ember

    Ember Senior Member

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    Nothing in the expert's letter to Secretary Sebelius contradicts the position taken by the International Consensus Panel. Patients contradict the experts at their peril. A lack of consensus between patient groups and the scientific community opens the door to having a group such as the IOM committee make recommendations to resolve the controversy. Our strength lies in our willingness to support our experts.

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