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Lesson learned: Separate ME from CFS

Discussion in 'General ME/CFS Discussion' started by lnester7, Dec 16, 2014.

  1. lnester7

    lnester7 Seven

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    After the charade of video and p2p I think as a community all efforts should go to separate CFS from ME.

    We are never going to move forward until that happens. We can agree later on criteria, and details.
    The bad we loose all the current studies? Well since they are obviously un-usable to our advantage anyways, not big loss since none was worth including for p2p. We can use the raw data and republish w the ME criteria and exclude the vague CFS subjects. and we duplicate the good ones, double blinded. Which apparently is what will get us somewhere. Just my conclusion.
     
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  2. alex3619

    alex3619 Senior Member

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    Most of the leading researchers are already doing this, using the CCC. It still has the term "CFS" in the ME/CFS label though .

    We cannot stop people publishing using invalid definitions like the Oxford definition. That is up to publishers ... its apparent that the peer reviewers come from a small, select group. Its also up to government agencies to reject Oxford defined research. Fukuda is less obviously invalid, but its still far from optimal. We also lack the capacity to reach every doctor in the world, especially if we are fighting competing views like those using the Oxford definition.

    We cannot get funding to do all this. On our own we might get somewhere in about forty or fifty years if we wanted to replicate all the better research under an ME definition. Clear paths forward for research have been obvious in some respects for many years. Our researchers just cannot do it because with the existing funding the have to design small studies with the minimal number of tests, and sometimes opt for cheaper tests over better ones.

    Funding is related to political interest. In an age in which this disease is costing the world hundreds of billions of dollars every year, how can any politician justify not supporting biomedical research into treatments and cure? Nobody who is not supporting biomedical research into ME can reasonably claim to be fiscally responsible.

    Political inaction on this is a giant white elephant that demonstrates pervasive and world wide government ineptitude.

    This is quite apart from the issue of deliberately ignoring millions of suffering people. Very often we tend to fall through the safeguards in society until we hit the lowest possible rung.

    There are indeed ways forward. Its just not easy to force change.
     
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  3. wastwater

    wastwater Senior Member

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    I always liked Dr Byron Hydes take on it.M.E is acute viral onset,day and night difference,usually involving the Thyroid eventually.CFS could be anything(missed diagnosis)
     
  4. taniaaust1

    taniaaust1

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    The "chronic fatigue" has always needed to be separated from the "ME".

    While these two things are blended together.. we will be forever mixed up with Dr Wessely's "CFS" patient group who actually has got some help from GET and CBT (I assume he must of helped some who had fatigue or depression).
     
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  5. Valentijn

    Valentijn The Diabolic Logic

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    I don't know ... you might be giving him too much credit even in that circumstance :rolleyes: He doesn't seem to have a strong connection to reality, so I wouldn't credit his reports of having objectively helped any patient in the absence of strong evidence.
     
  6. snowathlete

    snowathlete having a NICE day for once

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    While I agree that the obviously poor definitions should be dropped (Oxford, which is ludicrously and deliberately vague; and Fukuda, which although better is still very poor), in favour of the better definitions we already have (CCC and ICC) I actually think focusing too much on this is a mistake.

    The above would clearly take us forward and we should definitely try and achieve that. I also agree that the loose term 'chronic fatigue' needs to be disassociated as this can be applied to just about anything and just further muddies the water.

    But we don't have enough good evidence to take things forward further than that right now. All the criteria rely on the dodgy non-science of diagnosis based on exclusion and fairly vague symptomology. Whatever label you use, people with this disease have a range of symptoms which are the same as some but differ from other patients with the same of different labels. The same people have a disease that looks maybe like CFS at one point in their disease stage and more like ME at another, and all kinds of things in bettween.

    In my view, if we reach the point where CCC or ICC are the standard, then I think effort would subsequently be much better spent on getting research and other advocacy done. Ultimately, at some point research will be what delivers a biomarker, or biomarkers, that will allow us to differntiate more accurately and perhaps split ME and CFS, or other kinds of subsets into different diseases or disease stages.
     
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  7. Hip

    Hip Senior Member

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    That's the real issue, the defining criteria, not the name. The disease you study as a researcher is defined by the inclusion criteria, such as the CCC, CDC Fukuda, or Oxford criteria.

    The name itself is not that relevant from the research and scientific perspective.


    People like myself who do not get much physical exertion PEM, but gets lots of mental exertion PEM, may fail to be classified as an ME/CFS patient under the CCC (although it's open to some interpretation), and I would definitely not be classified as an ME/CFS patient under the ICC. However, I am definitely classified as an ME/CFS patient under the CDC Fukuda.

    So I don't think the CDC Fukuda criteria should be considered poor; they may better define this disease that the CCC.
     
    Last edited: Dec 17, 2014
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  8. snowathlete

    snowathlete having a NICE day for once

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    I see your point, and I agree that it's a valid argument. Some people with the disease might be included by Fukuda when they would be wrongly ruled out by a stricter criteria. However, I think that number is likely to be lower than the number of people presenting with other diseases which Fukuda also includes, and therefore on balance I consider it a poor definition when it comes to conducting research, as for every person in a Fukuda study like you, I suspect there are two or three who aren't actually representative of the disease.

    Take CCC or ICC as the opposite argument: it might wrongly exclude some like yourself, but it would also exclude that larger group that have some totally unrelated conditions and so the research on balance would be less muddled.
     
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  9. Ember

    Ember Senior Member

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    Over the past decade, our expert consensus panels have shifted their position to favour separating ME from CFS, based on clinical knowledge and research:
    ME/CFS represents the transitional stance taken by the CCC: “'Myalgic Encephalomyelitis' and 'Chronic Fatigue Syndrome' are used interchangeably and this illness is referred to as 'ME/CFS.'”

    But ME≠CFS is the current ICC position:
    The AHRQ Evidence Report acknowledges, “It may be that the CFS criteria capture a broader population (such that ME and ME/CFS are subsets of CFS), or that ME and ME/CFS identify separate groups entirely.”
     
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  10. alex3619

    alex3619 Senior Member

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    The problem is not that ME shouldn't be separate from CFS (which should be separate from idiopathic CF) but that we have no mechanism to force this change, and we have been calling for it for a long long time. I hope, and I strongly suspect based on recent comments, that the CDC multisite study might validate PEM as a critical symptom, which immediately discredits Fukuda and Oxford. It leaves only ME diagnoses and the CCC, which is a defacto ME diagnosis anyway.

    The other thing is that the term ME is likely to be only transitional from now, as we are discovering so much that a new (currently untainted) name might emerge.

    As I have commented in some older blogs, if all the good research uses an ME diagnosis, the poor research using Oxford will be isolated. This is up to our researchers, and they have been moving in this direction for a while now.
     
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  11. alex3619

    alex3619 Senior Member

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    The problem is this might better identify a broad cohort, with a higher risk of more diseases or disease subtypes. Clinically its useful, as a research tool its dubious. However I would like to see some studies looking at Fukuda patients who qualify for CCC, ICC etc., versus Fukuda patients who do not. How are they different using objective markers?
     
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  12. Hip

    Hip Senior Member

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    Yes, I think you hit the nail on the head in pointing out that any definition of ME/CFS intended for research purposes may have different objectives to a definition employed for daily clinical practice.

    With a research definition, you might want to be very stringent, to try to ensure that all the patients in you study cohort do indeed have ME/CFS, and not some other similar conditions.

    However, for clinical purposes, you would not want to be quite so stringent, otherwise you may exclude people that have ME/CFS from being diagnosed with ME/CFS.



    In any case, I would like to see a new ME/CFS definition devised which was as stringent as the ICC, but which included patients who tend only to get PEM from mental exertion, and not from physical exertion. By excluding mental exertion-only patients as the ICC does, you may actually miss scientifically important aspects of this disease.
     
  13. Ember

    Ember Senior Member

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    Speaking with authority, the lead authors of our expert consensus panels describe the CCC as a transitional definition.
     
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  14. Hip

    Hip Senior Member

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    By the way, you often hear people say that the CCC definition is associated with the disease classification of myalgic encephalomyelitis; but is there any official indication that ME = CCC definition? In other words, is there any official document that connects ME to the CCC?

    And what criteria would chronic fatigue syndrome be officially associated with, the CDC Fukuda criteria?
     
  15. alex3619

    alex3619 Senior Member

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    This is why there is often both a research and clinical definition. We have the issue that our research definitions became clinical ones, then new clinical ones like Oxford were created.
     
  16. taniaaust1

    taniaaust1

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    Hi Hip, You are assuming in your post it will end up being the same, what if its not? It could be a different undiscovered or not known about much illness and hence may be why yours is manifesting a bit differently to most others.

    If they dont get stringent, they may never get clear biomarkers. At least once they have those they'll be able to know who else who doesnt quite fit in fact has it. Its essential they get clear biomarkers and then be able to go from there.
     
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  17. Goodness to M.E.

    Goodness to M.E.

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    Well worth the read, CFS and M.E. are not the same and until we stop indicating such, the confusion and disregard of the severity of M.E. amongst the medical and broader community will continue.
     

    Attached Files:

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  18. Hip

    Hip Senior Member

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    It's possible that those on this forum with mental-only PEM might have a different variation of ME/CFS, certainly.

    Though if I understood it correctly, @zzz mentioned recently in this post that Dr Jay Goldstein's SPECT scans, showing hypoperfusion (low blood flow) in the brains of ME/CFS patients as a result of doing physical exercise, looked identical to the hypoperfusion induced from performing mental exercise.

    Note that the CCC and ICC mention both physical exertion-induced PEM and mental exertion-induced PEM as symptoms of ME/CFS; so the ICC certainly recognizes mental exertion-induced PEM.
     
    Last edited: Dec 18, 2014
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  19. Valentijn

    Valentijn The Diabolic Logic

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    Yeah, for research purposes it's definitely a good idea to study physical and cognitive PEM patients separately. It would be very interesting to see a comparison of the cognitive-only PEM patients to the typical PEM patients, if a large enough sample size can be gathered.

    Though for clinical purposes, it's probably best for now to include the cognitive patients with the typical patients, since they do have a lot of the same issues and can benefit from the same treatments. And I don't think there's any other diagnosis currently which includes cognitive PEM while excluding ME patients.
     
  20. Ember

    Ember Senior Member

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    To receive an ME (ICC) diagnosis, patients diagnosed following the CCC need to be reassessed: “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.”
     

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