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CDC Interview on the CFS Toolkit

Discussion in 'General ME/CFS News' started by Mindy Kitei, Oct 27, 2012.

  1. WillowJ

    WillowJ Senior Member

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    ok

    so yes, by "the broader category of CFS" here, they appear to mean ICF [which, IMHO, is inappropriately and illegitimately called CFS).

    I'm quite sure that Coalition 4 ME/CFS means something quite different by CFS: that patients who have ME are being diagnosed with CFS [under an inappropriate name/inclusion] (and have been since Day 1 at Lake Tahoe)--this is what Andrew has been saying as well, if I'm not mistaken. USA needs an appropriate code for ME* and does not need an additional code for CFS/CF [ICF] when we already have other codes for ICF.

    (UK, on the other hand, needs to use their code for ME and stop conflating with neurasthenia/fatigue syndrome--which is something US wrote out of our CM long ago due to it being considered prejudicial how this condition is now viewed. I do not know the coding situations in Australia, Canada, etc.)

    *and it's thought we need to temporarily tag the name CFS, unfortunately, partly to link to all the research ICC/ICP cites and partly (this part is what I know the Coalition says) because it's not yet clear how we prove to Medicare that we have that (rules for disability benefits seem to be that you need to be proveably disabled and have a proveable diagnosis for some condition(s) which could plausibly cause your disability); CFS has a special dispensation saying tests are not absolutely required to prove the diagnosis, but ME doesn't--of course we have tests which would likely turn out abnormal but none we've all agreed are diagnostic and many of us can't get our docs to order them in any case, and they might not know how to interpret them if they did. I've been told the Coalition had people working on the Medicare end, to the end that we can drop the "/CFS" after this is fixed.

    I do not see the two (IC panel and Coaltion) as being in conflict at all.
     
  2. WillowJ

    WillowJ Senior Member

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    hi Alex, but what do you mean by CFS here? that is what I do not understand. thanks :)
     
  3. alex3619

    alex3619 Senior Member

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    I don't mean anything by CFS in particular. Its a term with multiple meanings. The ICD does not address this. Different groups will continue to use their own definitions, and while we can try to counter that it is indisputable that this will continue for at least some time. So CFS is defined by the users. To me its just a generic label, a description of what others are doing. I do prefer, in selected instances, to refer to Oxford CFS or Fukuda CFS or whatever. That at least is a little more precise. All those definitions together (and there are a few more) comprise the set that is called CFS.

    With respect to the ICD the diagnostic code for CFS is best, I think, slightly different to ME though perhaps in the same section. Unless the ICD assumes the right to force diagnostic criteria on doctors, which it doesn't currently, then thats the most we can hope for.
     
  4. Ember

    Ember Senior Member

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    When International Consensus Panel writes of broader (or other) criteria for CFS (or its hybrids), it means Oxford, Reeves, London, Fukuda, CCC, etc: “Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC.” The International Consensus Panel recommends that ME patients should be removed from that more encompassing CFS classification. The Coalition argues that ME and CFS are the same. Many take these positions to be in conflict.

    With reference to the CFS Toolkit, I should repeat that Dr. Unger noted a year ago, "Opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities.” She complained, “I have gotten lots of communication from people saying that CFS is different from ME. I have got people that insist that it is the same thing. I think that there is disagreement. There is confusion in the field about whether it should be the same thing, whether it should be two things, whether it should be a hyphen name. Until there is clarity of what we are talking about, we cannot give good guidance.” Dr. Unger added, “We are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward.”
     
  5. WillowJ

    WillowJ Senior Member

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    ok, that's reasonable. thanks

    thanks for your help with this
     
  6. Ember

    Ember Senior Member

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    With reference again to the CFS Toolkit, couldn't we simply be telling Dr. Unger that we support the ICC? The CDC could keep its CFS Toolkit if it would recognise ME as a disease, distinct from CFS, to which the CFS Toolkit doesn't apply.

    The CDC might be open to persuasion when it comes to recognising ME as a disease distinct from CFS. Dr. Unger provided that opening when 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.”
     
  7. Andrew

    Andrew Senior Member

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    For years the patient community has fought hard to rid ourselves of the stigmatizing effect of the CFS name. Researchers such as Leonard Jason had even conducted studies that demonstrate the prejudicial effect this name has on medical students. If the ICC ends up as the defacto definition for our illness, it will be a great gift to those of use who fit this description. Not just for PR reasons, but because it differentiates our illness in a that allows for focused research. But it will split the patient community in two: those who fit ICC (and atypical ICC), and those who do not. Many of the patients who do not fit ICC suffer from orthostatic intolerance, sort throat, tender lymph nodes, pain, and flu-like symptoms. For us to now recommend that these people classified as CFS patients is inhumane. We should know better than this. We should care more than this. We should not be demonstrating the same kind of insensitivity that has been shown to us for so many years. We should not be endorsing, promoting, or recommending that this term be placed on people who don't meet the full ICC.
     
  8. Ember

    Ember Senior Member

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    That's a little harsh, Andrew. Remember that criticising the broad CFS definitions instead would have the consequence of labelling many CFS patients with ICF.
     
  9. WillowJ

    WillowJ Senior Member

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    ICF is nothing more than "we don't know what's wrong with this fatigued patient". often it's because no one has tried very hard to diagnose them (though there could be some additional unnamed diseases in there but it's a bit hard to tell because there has been a lack of effort towards differential diagnosis, testing of any of us [ME, ICF, whomever], and research). AFAIK, ICF lacks much of the stigma which CFS and ME have, and health authorities are not generally suggesting it is some kind of syndrome or should be treated primarily with CBT, GET, professional counseling/LP, and a pat on the head.

    nonetheless, any complete strategy should be to insist that these patients, also, receive thorough differential diagnosis, and if necessary, proper scientific study of whatever additional various disease(s) might be there.
     
  10. Andrew

    Andrew Senior Member

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    Good points. And I'm not even saying we should push for a complete solution at this time. What I'm suggesting is don't defend the designation of CFS as a legitimate definition. Don't suggest that the rest of the patient community be placed into this category.
     
  11. Ember

    Ember Senior Member

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    Doesn't CF also lack the disability benefits?

    By definition, patients diagnosed with CFS need not experience exercise intolerance. Those patients who can tolerate exercise might actually benefit from GET, even though it's contraindicated for ME patients. How is Dr. Unger is defining CFS, I wonder, when she writes, “The information in the Toolkit is not inaccurate, and we have verified this repeatedly in discussions with clinicians who care for CFS patients.”

    The International Consensus Panel states, of course, that it “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.”
     
  12. WillowJ

    WillowJ Senior Member

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    hmm, disability benefits, good point. The solution to that, I think we both agree, is differential diagnosis. This should work for hopefully most of the patients. If there are any left, as I said, I agree that prompt research is in order.

    GET, fairly unlikely. PACE proved that GET does very little for most people with ICF. For the (from what we can tell) very few people that did improve over the course of the study, we have insufficient information to tell whether that was actually from the GET, or whether it was a spontaneous remission. For example, this could be from a short-term PVFS or from MDD (which can occur and then resolve, then either remain resolved or recur later) or a temporary remission from MS, or from any other possibly short-term or remissable disease which could be in such a collection of patients as would be selected by Oxford. There are multiple reasons which could artificially bring the GET group to walk tiny bit farther than the others, but it does not seem to be clinically relevant in any case. (I am dismissing the surveys out of hand due to design bias, measurement bias, overt interviewer bias, and possible (& possibly induced) response bias; there was also sampling bias but that doesn't pertain to ICF, only to the other groups they wanted to study)

    It is likely Unger is thinking mostly of ICF patients, but she is thinking of them under the CFS name. She appears to genuinely and passionately believe that the Georgia cohort identified with the "Empirical Approach" is CFS, not ICF. Therefore the advice given by CDC and the stigma doesn't attach to ICF (or NSF, for which they seem to claim only "needs attention and treatment equally", and I am not about to argue with the idea that ICF/NSF needs a lot more attention and treatment--beginning with careful evaluation for existing diseases).

    as to ICC, again not a contradiction.

    There are many meanings for 'CFS' and we don't all use that the same way, and not necessarily the same way in every context. (I, for instance, might use 'CFS' to refer to research done using "an inclusion which styled itself 'CFS'" in which case it might well mean ICF by an illegitimate [and inappropriate] name, or I might use it to mean "the ICD-CM-codable diagnosis given to me" in which case it means ICC-ME and CCC-ME/CFS by an inappropriate name.)

    If we want to understand each other we need to figure out what the meaning is in a given context.
     
    alex3619 likes this.
  13. WillowJ

    WillowJ Senior Member

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    As far as the Coalition goes, this context should demonstrate what they mean by 'CFS':

    http://www.rmcfa.org/joint_request_mecfs.html

    Clearly the Coalition is saying CFS is like ICC-ME/CCC-ME/CFS and that is what should be classified as a neurological disease (not CFS=ICF).
     
    Purple likes this.
  14. Ember

    Ember Senior Member

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    The Coalition should bear in mind this statement by the International Consensus Panel: “Unfortunately, the name ‘CFS’ and its hybrids ‘ME/CFS’ and ‘CFS/ME’ have been used to refer to both ME and general chronic fatigue."
     
  15. Andrew

    Andrew Senior Member

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    Promoting the use of the CFS term is inhumane. And it isn't even a unified definition. So what happens is people who fit Fukuda are being judged according to research in done using Oxford. The last time I checked, the CDC was using a single Oxford study to justify GET, even though the toolkit uses Empirical. And according to the CDC, the Empirical definition is a research definition, and not mean for clinical use. But they put it in their clinical toolkit. And people defend this because, well, it's all CFS so it's okay to be unscientific and inhumane.
     
  16. Ember

    Ember Senior Member

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    A rose by any other name? The CFS umbrella definition won't be fixed by calling it ME.
     
  17. Andrew

    Andrew Senior Member

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    A wolf in sheep's clothing?
     
  18. Ember

    Ember Senior Member

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    Is that name-calling, Andrew? Are you referring to persons or to definitions?
     
  19. WillowJ

    WillowJ Senior Member

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    no patient/patient org discussed here is promoting CFS as a long-term solution or a positive thing.
     
  20. Andrew

    Andrew Senior Member

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    I agree, I haven't seen any patient/patient organizations that do this.
     
    WillowJ likes this.

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