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Accurate diagnosis of ME & CFS based upon objective test methods for characteristic symptoms

Discussion in 'Latest ME/CFS Research' started by Bob, Jun 23, 2015.

  1. Bob

    Bob

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    This came to my attention via Frank Twisk on Twitter: https://twitter.com/FrankTwisk/status/613278386610405376
    Open Access.

    Accurate diagnosis of myalgic encephalomyelitis and chronic fatigue syndrome based upon objective test methods for characteristic symptoms
    Frank NM Twisk.
    World J Methodol. 2015 June 26; 5: 68-87.
    Published online 2015 June 26.
    doi: 10.5662/wjm.v5.i2.68.
    http://www.wjgnet.com/2222-0682/full/v5/i2/68.htm

     
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  2. Sasha

    Sasha Fine, thank you

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    Interesting but the recommendation of CPET for diagnosis is worrying - it seems that people don't always recover from it. You shouldn't have to make your illness worse in order to get a diagnosis.

    Or is there a version of it that's safe?
     
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  3. alex3619

    alex3619 Senior Member

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    I have said similar things with respect to the SEID definition. All the major characteristics of ME are testable to a greater or lesser extent. We do need to move to objective methods.

    One thing that we really need is a standard battery of tests for measuring improvement of functioning. This topic has come up a number of times over the years. This paper might be a step toward that.

    I now consider three tests are useful for defining pathophysiology that are well understood and very very old in scientific terms. They date to 1940, 1946, and 1949, for TTT, qEEG and CPET respectively.

    I am now considering whether the opthalmoscope (1852) should be added to that list. The research this is based on is not published yet.

    If you add in actometers and sleep studies then you have all the major symptoms covered. CFS and ME might not be objectively diagnosable, but the key symptoms are objectively measurable.
     
  4. alex3619

    alex3619 Senior Member

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    I do not think there is a version that is safe. I think that this is, currently, a research tool, not always applicable clinically. However for some patients the rewards might outweigh the risks. What I would not like to see is that this test becomes mandatory. We do need better, safer, methods. For now its all we have however.
     
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  5. Valentijn

    Valentijn Senior Member

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    If the alternative is GET, then I think the CPET is warranted. I know which one I would prefer :p

    Of course it would be even better if certain doctors stopped being lazy turds, educated themselves sufficiently about the disease, and didn't disbelieve their patients by default. But since that isn't happening any time soon, the CPET is a decent alternative to a more prolonged period of medical abuse and neglect.
     
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  6. Sasha

    Sasha Fine, thank you

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    But I think there are plenty of reasonable doctors who will believe that symptoms are what patients tell them - but the suggestion seems to me to be that this becomes part of a standard battery of diagnostic tests to distinguish ME from other diseases with overlapping or similar symptoms.
     
  7. Nielk

    Nielk

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    Frank Twisk is making the case that ME and CFS, although somewhat overlapping, are two distinct entities.
     
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  8. alex3619

    alex3619 Senior Member

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    Doctors don't just serve their patients, they serve their profession and the demands of the authorities over them ... which means government and its associated organizations, or medical management companies, or insurance companies. They are the first gatekeepers on medical related costs.

    Best practice medicine, and most cost effective medicine, are not the same thing. These two goals are in conflict. Currently the default medical position seems to tend toward disbelieving patients.

    We need to get away from subjective assessments, which means biomarker research is very important.
     
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