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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. Sasha

    Sasha Fine, thank you

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    So ordinary individuals will also have a chance to sign (did I miss this!)?

    If so, great! The more the merrier. This is an absolutely crucial issue.
  2. taniaaust1

    taniaaust1 Senior Member

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    Ive always said and thought that changing the definition was the most important thing to get ME science on trait whether its called ME or something else. This article I thought was great, thank you for it.

    Its truely thought about everything eg those who dont have ME but have CFS tend to not understand why its important for ME to be separate from CFS so its important as the article did, to explain things. (I think having ME people mixed in the CFS group used as a security blanket for some as they dont understand how such a split would also be in their own advantage not just in the advantage of those who have ME).

    Those with CFS, we need to always make sure that patient group wont be abandoned when ME is clearer defined from CFS. (In reality that will be around 60% of ME/CFS still being classifed as CFS, so it will be the minority of the group being separated out by a new definition). Sure more then half of that CFS group have been misdiagnosed but a percentage of that group who's not left with the ME defination, will have illnesses not even discovered yet so will need help to continue on the fight for funding and study... hence I cant see the name CFS ever going away even when the time comes in which the name does change back officially to ME or something new.

    Anyway.. first things first.. the step into the right direction is to make it clear that CFS isnt a minor illness and use a good defination which dont just include people who are only tired!! CFS will never be viewed as a serious illness while that is being done.
  3. taniaaust1

    taniaaust1 Senior Member

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    I forgot to say.. I support the move into using the Canadian Consensus Definition..... its close to the ME one anyway and as article said.. it will make a needed change far easier to impliment and its change what is urgently needed (we dont want to spent the next 10 years fighting with no change). Once good research is done using that defination.. it will make it easier to maybe move back to using ME or to a name change then.

    . Its very good thou that that international ME definition is sitting there.. awaiting for its time to come (maybe it would only take a few years during studies using the CCC definition for the international ME thing to become accepted when people see how will it fits).
  4. taniaaust1

    taniaaust1 Senior Member

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    sorry for all the whole word mistakes in my posts.. I wish there was an edit on this.
  5. Bob

    Bob

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    Maybe I've missed your meaning, tania, but there is an edit function on the forum, and a delete function.
  6. Mark

    Mark Acting CEO

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    You didn't miss it, that's now been added to the article as a clarification:

    Sasha and Valentijn like this.
  7. Ember

    Ember Senior Member

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    I agree with much of the content of the letter, but I wouldn't sign it myself for a couple of the reasons already mentioned. One is that it reaches too far; the other is that it doesn't reach far enough.

    I think that the letter overreaches in expecting DHHS to dismantle a syndrome that's listed in the ICD-10-CM. Some of the signators have themselves argued that CFS needs to be classified as a neurological illness alongside ME.

    I think that the initiative misses the mark too by focusing on an inferior definition and primer. The ICC and ME Primer reflect an additional decade of research and clinical expertise. The letter describes the CCC as a definition “that can readily be further evolved in partnership with ME experts as additional data, knowledge and experience is gained, and as the definition is further operationalized and biomarkers are validated.” A decade in, this initiative doesn't engage that evolution and partnership.

    I prefer the example set by Invest in ME:
    The ICP authors also state, “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.”
  8. snowathlete

    snowathlete

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    I guess it might be felt by some that the ICC is too new and insufficiently tested. Still it might have been a good bargaining tool to have suggested its adoption as a preference and the CCC as an alternative.
  9. Sasha

    Sasha Fine, thank you

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    I don't ever expect to see the perfect advocacy letter that accurately expresses all my opinions and that I agree 100% with - I'm happy to sign up to something that is 70% or 80% there.

    We're too large a community and the issues too complex to ever get such a thing. I think our best strategy is to get behind something that has already been thought through by a lot of us and has got broad consensus and, if implemented, would improve our situation. Our situation now is appalling. We can't wait for perfection.
    ahimsa, taniaaust1, Nielk and 2 others like this.
  10. Mark

    Mark Acting CEO

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    I agree Sasha. One of the best managers I ever had used to tell me "the best is the enemy of the good". It was hard for me to accept that. I think the expectation is that use of the CCC may eventually evolve into use of the ICC if the ICC gains momentum; at the moment it's still quite a young definition and I think that's why the group settled on the CCC as a more realistic objective for now.
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  11. Mark

    Mark Acting CEO

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    Discussion of what some of the signators have argued in the past in a different context doesn't seem particularly relevant to me as regards whether one supports this particular letter or not. Campaign objectives always have context and timing - and often a degree of compromise to achieve what's achievable - and that landscape is always changing.

    In the context of this proposed move to the use of the CCC to define ME, surely it's appropriate and necessary that "CFS" be dismantled, since we know that the group that has "CFS" but not CCC-defined "ME" is a very heterogeneous group, and even if there is any subset of that group that has the same currently undefined neuro-immune illness, it's a very small percentage of that group; the research shows that a majority of that group have other undiagnosed known conditions (as discussed above). If one's opposed to the wastebasket concept - a definition that lumps together people with missed diagnoses and anything that is currently medically misunderstood into one group that can never be properly researched by definition - then surely one should say so? The broad definitions of "CFS" help no one (except perhaps psychologists and authorities trying to save money by ignoring emerging illnesses); surely we're all agreed on that?
    Valentijn likes this.
  12. Ember

    Ember Senior Member

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    For those of us being informed about the letter after the fact, this thread provides the only opportunity for open discussion. We do well to ask whether our “compromise” message is credible and sound, especially if we're out of step with the ME experts.

    Almost a year ago, fourteen ME/CFS organizations and 19 individual advocates send a joint letter to DHHS stating, “It is long past time to subset Fukuda-defined patients and actively consider the existing 2003 Canadian Consensus Criteria (CCC) or 2011 International Consensus Criteria (ICC) for those patients who suffer from the hallmark post-exertional malaise.” The 2012 joint letter asked for the adoption of the term ME/CFS: “Many experienced clinicians and researchers recognize the equivalency or close similarity of ME and CFS based on the growth in scientific understanding and have adopted the term ME/CFS. All of DHHS should follow the NIH’s lead and adopt the term ME/CFS." The letter asked too that CFS be reclassified as a neurological disease: “It is crucial that NCHS ensures that the ICD-10-CM classification of CFS is aligned with WHO’s neurological classification before ICD-10-CM rolls out.”

    This year's joint letter requests the adoption of the CCC (ME/CFS) definition and the ME/CFS Primer exclusively, though the name requested is now ME. CFS is to be dismantled, and DHHS is charged with responsibility for ensuring that no harm ensues. The ICC authors are cited often, but not with respect to implementation. The joint letter states:
    Our credibility depends on our partnership with ME experts. The International Consensus Panel writes that “the panel is not dismissing the broad components of fatiguing illnesses.... As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.” Is this statement consistent with the joint letter's plan for change? If CFS were to be dismantled prematurely, would those patients who don't meet the CCC be diagnosed with CF or would they perforce be included in an expanded or "empirical" version of ME?

    I appreciate that Phoenix Rising got involved in the drafting process partway through. But it should be possible to learn more about the process. Who actually had input? Were any medical or policy experts consulted?
  13. rlc

    rlc Senior Member

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    Excuse me if I have missed something, were the members of PR and the greater community asked in anyway if they were in favour of this? Or if they would like some input?


    Or is this just a repeat of the behaviour exhibited in the misguided attempts to change the WHO code for CFS?? Which was done behind the members and patient community’s backs. Which judging by the silence on the issue failed, as predicted.


    If this is another case of PR and the other US orgs going behind the backs of the members of PR, the patient community and people who give them donations, as was the case with the attempts to change the WHO code, I must admit to being somewhat disappointed (again).


    Having seen on several occasions that it is a waste of my time trying to explain, why these kind of plans not only won't work, won't be accepted and only succeed in portray the people who formulate these plans in a bad light, I won't bother to spend too much time explaining it.


    For members reading, this plan won't be accepted because the CCC is Canadian, and the CDC is already working on its own new definition. Therefore the US government will only want to use the new CDC definition, as using the CCC would be a public admission that the CDC is incompetent in this field.


    Nobody should be wanting the CCC because its own authors have rejected it, and have come up with the ICC instead, plus the CCC has a very incomplete set of tests to rule out other diseases, and has so many multiple choice symptoms that it doesn’t really define any disease, let alone ME. Hence the attempts to fix it with the ICC. The CCC also does not say that ME is a separate disease to CFS, it combines the two conditions and calls them ME/CFS, so using it will defeat the purpose of trying to get rid of the CFS name.


    It should also be noted that PEM is not a hallmark of ME according to the historical literature. PEM is a common symptom found in numerous conditions, and in no way is it helpful to separate ME patients from other diseases.


    ME acquired its name Myalgic because one of the symptoms as well as muscle pain, was post exertional TESTABLE MUSCLE WEAKNESS, not post exertional malaise.


    If people actually want to solve this problem properly, they need to recognise that the problems are not caused by what name is used, or what definition is used. The problem is and has been since CFS was invented in 1988, that none of the definitions including the CCC and ICC have complete differential diagnosis lists, to rule out other diseases, or complete testing lists for these diseases, with up to date reference ranges. Which means that no matter what definition researcher’s use they end up with mixed cohorts and the research is corrupted and goes nowhere. Try asking the US government to fix that problem and we might start getting somewhere.


    Anyway if I ‘m right in my belief that that patient community and PR members have not been consulted in this.


    To the PR team, please in future have the common courtesy, to let the people who through their donations allow you to have a PR to be a team member of know what you are doing. You may find that their input is more than useful. As in this case save you from wasting your time. Why do the US CFS orgs feel this need for secrecy? No harm would be done if the politeness was done to inform people of these kinds of things before hand.


    Anyway I have said all I need to say, as you may have guessed I won’t be signing this.


    All the best
  14. Bob

    Bob

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    rlc, I agree with some/many of your points, but not your overall conclusions.

    The way i see it is that, as patients, and patient advocates, we have three overall options, in terms of advocating for change:
    1. Do nothing.
    2. Advocate for specific changes, or
    3. Attempt to push the government organisations in a general direction.

    With specific changes, patients are never going to agree about all of the specifics. There are always going to be disagreements.
    However, the vast majority of us can probably agree about the direction of travel in which we want the government to travel.

    With this letter, even if we don't all agree on the specifics, if nothing else, it makes the government organisations aware of some of the issues that concern patients, and it makes them aware that there are strong feelings about these issues. As such, it helps push the government organisations in a direction of travel.

    (When I refer to 'issues', I mean, for example, the heterogeneity of CFS, and the need for research into subgroups. Also the widespread dissatisfaction felt about the name 'CFS'. etc. etc.)

    The letter puts pressure on the government health departments to take the issues seriously: to consider the issues, to engage with the patient community about the issues, and to investigate the issues with a view to making changes.

    Sure, the CDC, and other government organisations, probably won't adopt the CCC overnight (if ever), but the CDC could at least insist that the CCC is used in all government-funded research (which IMO can only be beneficial for everyone, and a step in the right direction).

    The letter puts pressure on them to treat subgroups and subsets as a priority, however subgroups are defined. We need better defined subgroups, which will hopefully start to emerge with continued research, but there's no harm in pressing the CDC to make subgroups a priority.

    As long as they are aware that CFS is a heterogeneous condition, and that it requires a serious and urgent investigation of subsets, and research into subsets, then IMO that's a good thing.
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  15. Bob

    Bob

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    Early ME literature evolved over time. The early definitions of ME were modified, by the original authors, and were not set in stone. As such, I'm not sure how helpful it is to rely on historical literature. Perhaps it's best to work with the most recent literature.

    I question your assertion that PEM is a common symptom found in a number of conditions.
    I have yet to hear of any other conditions in which PEM* is a symptom.

    * I'm referring to post exertional malaise, as opposed to post exertional fatigue: Specifically prolonged PEM which isn't relieved by rest. As far as I am aware, no other condition has the same symptom.
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  16. alex3619

    alex3619 Senior Member

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    I agree with a lot of the points made here on this thread. First, I approve of the letter, and I will sign it when that option is available. Second, I don't think it will achieve much. What it might do is send a message, and get people thinking, begin to create momentum toward real change. The ICC is a better choice, but it would not be acceptable just yet.

    At this stage I think the CDC will push for its own new definition. We will have to see how robust and validated that is, but here is the catch: its still years away, and then it will have to be studied, and only then will we be able to really advocate for or against it.

    There is no question that more robust research criteria will assist research outcomes. They may also assist clinicians in prescribing more appropriate treatments.

    The biggest thing arising from all this will be that it will demonstrate that we have the desire to clearly separate ME and CFS, and even CF, in a focussed way. The more who co-sign the letter, the clearer it will be. It may also assist construction of future agendas at meetings, and sets the stage for potential progress. Whether there is real progress will depend in part on future advocacy.

    I really think the CDC will stall and push for everyone to wait for their definition. Since they are now using measures like VO2max, its even possible they might make some serious advances. Given their history I am not holding my breath in hope, but I cannot say they will fail either, and they are not doing this alone. Maybe the CDC will finally begin to address the issues arising out of the numerous ME epidemics that have almost been forgotten. If not, we will be watching, and we will not be happy with the CDC. They have to get it right, its long past the time for distorted and biased agendas in the science of ME - we need clear objective advances.

    The fact is though that any doctor can choose to make a diagnosis of ME, right now. They choose not to, though largely I think because they are unaware of the last half century of ME research. If all this letter does is advance that awareness a tiny bit, thats enough. If it does more than that, its a bonus. If it does even more thats better than a birthday present.

    On PEM, while many conditions have exercise intolerance and post exertional fatigue, the nature and extent of the energy crash in ME appears to be unique to ME. Exercise science gives us the tools to show this. With a push to validate repeat VO2max testing for measurement of ME we might even wind up with a diagnostic biomarker. Not everyone with CFS or CF will have ME though.

    There are now several potential diagnostic biomarkers for fibro too. Things are changing, and for the better, and the time for unproven unscientific hypotheses such as used in psychogenic medicine is drawing to a close.
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  17. Ember

    Ember Senior Member

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    Is a decade-old Canadian-based document that is in the process of being superseded likely to be more acceptable than the ICC? Do patients find it more acceptable?

    If patients want to demonstrate that we have the desire to clearly separate ME and CFS, and even CF, in a focused way, then why don't we demonstrate just that? Do we really see no danger in having CFS dismantled at this stage?

    Why are we asking that the term ME be assigned to the CCC? The authors of the ICC have asked that a CCC (ME/CFS) diagnosis be left in the broader CFS classification. The ME-ICC is intended to be more restrictive. Why counter that intent?
  18. Nielk

    Nielk

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    What is the characteristic difference between the CCC - CFS definition and the ICC-ME definition?
  19. alex3619

    alex3619 Senior Member

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    The primary difference between CCC and ICC in this context is not based on the definitions, but on the politics. The CCC is already widely adopted, its also better characterized in the literature due to continued use. The ICC will get there. I see the CCC as an interim measure until the weight of support is there for the ICC, or the definition after the ICC whatever that is. This is not just a scientific game, its a political one. Its also about long term strategy.

    We should also not be confused by the term CCC CFS - its an ME definition, always was.
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  20. Ember

    Ember Senior Member

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    The “characteristic” difference between the CCC (ME/CFS) and the ICC (ME) definitions probably lies in the cardinal feature of the disease. Valentijn posted here the difference between PEM (ME/CFS) and PENE (ME) in reported responses to exercise. I pointed out earlier here that PENE, unlike PEM, is defined as having prominent symptoms primarily in the neuroimmune regions.

    A while back, I commented too on a key difference between the ME/CFS Guidelines (by CCC authors) and the ME/CFS Primer (by IACFS/ME authors) here. I notice that Wildaisy has also commented here more recently. The ME/CFS Primer is much softer than are the ME/CFS Guidelines on CBT/GET. The ME Primer, by contrast, doesn't mention these as possible treatments for ME.

    The politics surrounding the definitions and primers is its own story, with CFS (including ME/CFS) focusing more on fatigue. CFS (including ME/CFS) definitions generally require that there be six months of fatigue for a diagnosis.

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