International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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biomarkers vs Clinical diagnosis

Discussion in 'General ME/CFS Discussion' started by voner, Jan 15, 2015.

  1. voner

    voner Senior Member

    this is from a discussion @Jonathan Edwards and I had. I thought other people might find something of interest here.....

    Helen likes this.
  2. Mary

    Mary Forum Support Assistant

    Southern California
    @voner - That's actually sort of scary to realize that research into RA was so happenstance, and involved "boring" chronically disabled people. Maybe people with CFS/ME are too boring! Maybe that's why there's no real money being put into research?

    We do have biomarkers and low cortisol is not one of them. For many of us cortisol tends to be on the high side, but cortisol does seem to be involved.

    The most dramatic biomarker I have read about is shown by the results of the 2-day exercise stress test (developed at the Pacific Fatigue Lab at the University of Stockton), where people with CFS when given the exercise stress test two days in a row, on the SECOND DAY (post-exertion) had extreme disability which was easily measured, some were on the verge of heart failure, and none of this was explained by lack of conditioning or weight or any of the usual suspects. It's an extremely striking anomaly not seen in any other illness. And it's clinical evidence of "post-exertional malaise", one of the most inapt terms ever devised to describe a physical phenomena. A more fitting term would be "post-exertion hit by a semi-truck feeling".

    There are lots of other biomarkers. The sense I get from the medical community at large is that they have decided, in the absence of any evidence, to dismiss CFS as not all that serious and probably all in our heads, ignoring all the evidence. If we were dying from CFS, they might take us seriously, but since our lives have just stopped, and it doesn't seem to be that communicable of an illness, very few are really interested. I had one doctor tell me, after looking at the health questionnaire I had filled out stating that I couldn't work or do hardly anything due to CFS, that she "didn't treat that" and then she went on as though it wasn't worth mentioning. I couldn't see her doing that if I had stated that I had AIDS, even if she didn't treat it.
    ahmo likes this.
  3. voner

    voner Senior Member


    I agree that the PEM studies by Workwell or the Lights PEM studies seem to point to a pretty darn clear way to diagnose. Both studies need replication. I also think that experienced clinicians (thenfew that exisit) do not need a biomarker to diagnose. It would be nice, but not neccesary to diagnose.

    a biomarker would give researchers/NIH/CDC/etc. an easy way to screen participants. That is why they push it. It eliminates the huge problem of patient selection via what criteria or definition. Also gives inexperienced clinicians a an easy diagnosis tool.
  4. Gingergrrl

    Gingergrrl Senior Member

    These seem to be potential biomarkers:

    1) PEM studies by Workwell Foundation

    2) Low NK functioning tests

    3) non-existent Vasopressin (ADH) on blood tests
    voner likes this.

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