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Australia: MindFood: Misdiagnosing ME

Discussion in 'General ME/CFS News' started by Firestormm, Jul 23, 2012.

  1. In Vitro Infidelium

    In Vitro Infidelium Guest

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    CFS = illness of unknown aetilogy
    ICC = illness of unknown aetilogy
    CCC = illness of unknown aetilogy

    how therefore is it possible to exclude the possibility of aetiological overlap (either total or partial) beween cases defined by the competing criteria ? Quite simply it is not possible, there is no gross symptom in any of case definitions or criteria sets, from Ramsay to the ICC (and everything in between), the absence or presence of which has any reasonable probability of being a distinguishing factor in the aetiologies of the illnesses decribed by those case definitions and criteria sets.

    I fear what afflicts this discussion is a bad case of nominal fallacy, - the sense we all tend have that once something has been given a name, we know what it is and the named thing is somehow different to everthying else that has a name. Many named things are of course different from each other but in most case naming doesn't tell us how things are different, or tell us how similar they are. The challenge for research into M.E/CFS/M.E is not how to re-arrange the allocation of gross symptoms so as to identify the single ideal research subject, but to find out what is going on in the bodies of a broadly selected range of patients.

    IVI
    Firestormm likes this.
  2. Firestormm

    Firestormm Guest

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    Guilty. Or at least I think the label myalgic encephalomyelitis should describe the condition. I think too that it is more to do with the fact that WHO have ME under neurology than perhaps the label and what it actually means.

    If CFS were in neurology I wonder if we'd have any such concerns - apart from not liking it as a name. Anyway, thanks for that I shall remember it: nominal fallacy. Hmm...
  3. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Yes that's exactly the kind of problem I was thinking of - the name is attached to a (pressumed) quality which then becomes the basis of argument as fact. But the WHO categorisation has no diagnostic force, it is just a system of disease catagorisation, a bureaucratic process not a clinical one. Using the WHO categorisation as a tool of advocacy is fine, such as when faced with entrenched psychiatric positions, but we should never make the mistake of believing our own propaganda. We can just as easily become (in a philosophical sense) a prisoner of the names Myalgic Encephalomyelitis, or Myalgic Encephalomyopathy or CFIDS, as we can (in the thinking of others) the name Chronic Fatigue Syndrome.

    IVI
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  4. Valentijn

    Valentijn Activity Level: 3

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    Regardless of etiology, there are different definitions that are used, containing different symptoms. My symptoms match certain definitions very well, but have little in common with other definitions. Based on studies that have been done, I know that only about half of the people included in some of those studies have a disease that involves the same symptoms which I experience.

    The names may be quite meaningless in and of themselves, but they are used to indicate very different groups of patients. Studying cancer and MS patients as a single group, under the umbrella of any shared symptom, is not going to provide any useful information about either condition, but rather a useless mishmash of contradictory data that might conclude that, on average, the members of the combined group have no abnormalities.

    But this is what happens when grouping patients with very different symptoms, and it happens constantly with ME patients. No one is proposing that the name "Myalgic Encephalomyelitis" is proven or even accurate, but it is the only practical alternative we have to distinguish patients with our symptoms from patients with simple chronic fatigue.
  5. Ember

    Ember Senior Member

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    The authors see the ICC as an advancement over the CCC:
    They aim to advance the science by allowing “a selection of more homogeneous sets of ME patients:”
  6. In Vitro Infidelium

    In Vitro Infidelium Guest

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    It is only 'useless' (or more accurately redundant) to study cancer patients and MS patients as a single cohort, because the science now exists to be able to demonstrate wholly separate aetiologies. However go back 150 years, take a cohort of patients who randomly happen to be suffering from (what we now know is) leukemia induced weakness, and from (what we now know is) MS induced weakness and as science progresseses someone will eventually discover that sources of weakness fall into two sets of aetiologies. One can not arrive at such a position prior to the science being undertaken.

    Of course one might argue that there are gross symptoms of leukemia and MS that would allow basic seperation of the two diseases without biochemical, surgical study or post mortem study - but the biochemical, surgical and post mortem studies would not be confounded by looking at a mixed cohort of leukemia and MS sufferers. If there are abnomalities to be found, so long as the sophistication of technique exists, discoveries will be made. It's not as though the process of investigation involves taking blood from 20 patients, pouring all the boods into one receptical, testing it, and then dividing the results by 20.

    IVI
  7. Ember

    Ember Senior Member

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    Hasn't CFS always been an umbrella definition, obscuring ME? That's why the ICC recommends that ME patients “should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.”
    How could the CCC have had more impact when the UK and US establishments have both chosen to obscure ME? Dividing and conquering patients has been like child's play for them. Patients can't manage to speak with one voice, saying that we're different from one another.

    We do have opportunities though. Cort reports that the latest Program Announcement for the NIH has for the first time left the definition open. We could be advocating for CCC and ICC cohorts to be included in all research. The Coalition4ME/CFS is committed to “advocate for the adoption of the Canadian Consensus Document.”

    But for now, advocates remain badly confused. On the one hand, they claim, “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.” But on the other hand, they argue, “Many experienced clinicians and researchers recognize the equivalency or close similarity of ME and CFS based on the growth in scientific understanding....” Based supposedly on the ICC, they argue further, “When properly defined, CFS is the same as ME.”

    Whatever does “when properly defined” mean? The lead ICC author himself writes, “While it has always been essential, it has now also become urgent to segregate the subset that we are calling ME more clearly, using the ME International Consensus Criteria. Advocates need to read the case definitions and stop compounding the confusion that they decry.

    In the article that you posted, Dr. Bassett points out, “CFS and ME are not the same thing; the names are not synonymous.... 'It’s not just about names. It’s about definitions being wrongly mixed up and misused.'”
  8. taniaaust1

    taniaaust1 Senior Member

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    Id like to point out one subset which is caused by a certain trigger has already been separated.. That being Gulf War Syndrome. They get the same symptoms as us and lucky for them.. their subgroup also gets to be studied separately.

    Another subgroup I'd think would be the vaccine group.. those who got ME/CFS after a vaccine. (maybe it is exactly the same illness as the infectious group if it was something caught from the vaccine.. but it probably would be best to subgroup well so they can more easily work this whole illness out... maybe different parts of us are damaged according to the trigger which ends up leading to the same result?).

    They should give that subgroup a different name. They should give all the subgroups different names to make sure they are studied separately just like the GWS group is. If it turns out they are all the physiologically the same.. well only then should they call them all the same name

    I didnt get to see the video (I only have a dial up connection) but I read the transcript or followed peoples comments on what was going on while the meeting was taking place. Im against reinventing that wheel again.. is been reinvented too many times now already so I dont think any one takes new reinventions seriously any more. I wish they'd just stick with the canadian consensus definition if they arent going to start seriously subgrouping
  9. Valentijn

    Valentijn Activity Level: 3

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    There's also Post-Viral Fatigue Syndrome and Post-Q-Fever Fatigue Syndrome.

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