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Scientific progress stumbles without a valid [CFS] case definition - Leonard Jason

Discussion in 'General ME/CFS News' started by AndyPR, Aug 20, 2017.

  1. AndyPR

    AndyPR Senior Member

    Commentary from Lenny Jason.
    Extra spacing mine for ease of readability.

    Read more at https://blog.oup.com/2017/08/scientific-progress-without-valid-case-definition/
     
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  2. A.B.

    A.B. Senior Member

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    There seems to be an ongoing disagreement between the Jason and the Montoya group on the SEID definition. This article seems to be a response to this

    Differences of opinion on systemic exercise intolerance disease are not ‘mistakes’: a rejoinder to Jason Sunnquist, Gleason and Fox
    http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1362750

    I thought the Montoya group made some interesting arguments, such as (paraphrasing)

    "a more restrictive definition does not mean that it identifies the illness better than less restrictive definitions"

    "orthostatic intollerance seems to be present in nearly all patients in some form and in varying degrees of severity"

    "existing case definitions were based on patients that have been ill for a long time and may not accurately reflect the initial stages of the illness"

    "lack of exclusionary criteria in the SEID definition is important because patients can easily have multiple medical conditions, whereas with exclusionary criteria they would not be able to have all their illnesses diagnosed and treated"
     
    Last edited: Aug 20, 2017
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  3. alex3619

    alex3619 Senior Member

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    ALL the definitions are flawed, though perhaps the worst is the Oxford definition of CFS, especially when its presumed to cover ME.

    Jason is right in this much ... we need a valid diagnostic category or categories. For that we need biomarkers. The history of definitions is that consensus definitions or one expert definitions tend to be varyingly inaccurate, and hard to verify, and this is not just the case with ME or CFS. Reliable biomarkers will change that.

    I do not see this debate being definitively resolved until provably reliable diagnostic biomarkers are clinically available. When that happens we might find all the definitions and names are abandoned or modified.

    Most of our researchers are very aware of the biomarker dilemma. Its no coincidence that many are moving to try to identify one or many diagnostic biomarkers. However this might require we first figure out the specific disease process/es at least in outline.
     
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  4. slysaint

    slysaint Senior Member

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    What about the 'pooped out serum' test that Ron Davis has devised? It'd be good to see it tested out on a large sample.
    Are there any plans for this? Maybe in collaboration with IiME and the Biobank?
    @JaimeS
     
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  5. alex3619

    alex3619 Senior Member

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    You need a lot of things to create a validated diagnostic biomarker. If it finds something, that is only step one. Along the way you have to determine specificity and sensitivity. If you do not have a good grasp of the disease to start with this can be very difficult. Specificity is a real bear because you have to demonstrate this finding is not in other diseases. So it requires much more than a regular biobank. Sensitivity is about finding valid ME or CFS cases, and a biobank will help a lot there. I am omitting a lot of stuff here, and there is probably a lot I do not know about.

    You can determine if something shows a regular pathophysiological biomarker much easier than a diagnostic one. Its also a step along the way. I would be surprised if the impedance chip were not tested to this standard by late next year. It might be much sooner of course. We already have this in the two day CPET, which also shows high sensitivity and some specificity.

    Its specificity testing that is going to be the big challenge.
     
    Last edited: Aug 21, 2017
  6. 62milestogojoe

    62milestogojoe What's a forum then?

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    You are right about that. I work as a biomed in the NHS and am currently 'lobbying' for a repeat of the Osaka PET scan study (in neurological symptoms forum) and trying to gather information from PR members regarding AAB positive results (immunology symptoms forum).

    Could be an impossible ask but the former might show extent of neuroinflammation and the latter might confirm AAB. (If indeed, these relate to pathogenesis/pathophysiology).

    ME/CFS is a very slippery disease to pin down diagnostically-but once that technique/s is validated we may finally see resources being aimed at treatment. This will not happen until we have a viable method/s of diagnosis.
     
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  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Could you remind me what AAB is, please?
     
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  8. 62milestogojoe

    62milestogojoe What's a forum then?

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    Hi MeSci. Auto antibody as in autoimmune disease.
     
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  9. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Oh - I've never heard it abbreviated like that before!
     
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  10. 62milestogojoe

    62milestogojoe What's a forum then?

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    I am a miserable pudknocker of a lab rat-it probably should be aAB.
     
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