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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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Diagnostic Criteria - can we resolve our community's differences?

Discussion in 'Action Alerts and Advocacy' started by Bob, Feb 2, 2011.

  1. WillowJ

    WillowJ Senior Member

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    I just don't want to promote the idea that there is such a thing as a useable "syndrome of CFS" that we can logically put people into which don't fit x criterion for ME.

    I reject the ME versus CFS dichotomy because I reject the notion that there is a valid clinical entity of CFS. There is no clinical entity which can validly be described by Fukuda, Holmes, Oxford, or Lloyd/Hickie 'definitions' or identified by the "Empirical approach". Simply doesn't exist in real life. In a CFS group there are 1) misdiagnosed people with a variety of other primary conditions which have been missed for whatever reason.

    Then there is 2) ME, and there may be a whole spectrum of ME-like diseases (whether like or unlike eitiologically; I do not see that we have the evidence to know which, at present), perhaps in a similar way that there are various forms of MS and diabetes and lupus, in a similar way as we think the autoimmune disease categories we have presently are arbitrary and artificial and there is a lot of variety within what we currently label with the same disease name.

    I do not think that ME is different from the RA example I linked to and I think it is unrealistic to think that ME should be expected to yield a more pure patient sample than SLE, RA, MS, etc.

    I think our inappropriate struggles for legitimacy have foisted unrealistic expectations upon us, since we are held to a different standard (many other diseases do not have biomarkers which are present among all/substantially all persons diagnosed, many other diseases do not have an ultimate causation identified [comparatively few do]; yet these things are demanded from our disease).
    alex3619 likes this.

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