1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Reading Tea Leaves

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Ember, Mar 24, 2014.

  1. Ember

    Ember Senior Member

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    By Jennie Spotila
    March 24th, 2014
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  2. Ember

    Ember Senior Member

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    According to Jennie, “ME/CFS patients experience more than fatigue after exertion; we suffer from an exacerbation of all symptoms (including immune symptoms), and 'fatigue' is a completely inadequate word to describe the prostration and collapse.” She writes:
    However, the descriptions of post-exertional prostration or collapse vary. The CCC describes the tendency for other associated symptoms within the patient's cluster of symptoms to worsen during Post-Exertional Malaise and/or Fatigue:
    But symptom exacerbation, primarily in the neuroimmune regions, defines Post-Exertional Neuroimmune Exhaustion (PENE) according to the ICC:
    Such differences matter: “If PEM is equated to fatigue lasting more than 24 hours after exertion – which is reported by Gulf War veterans – the argument that post-exertional malaise is unique to ME/CFS falls apart.”
  3. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Actually, the argument might not fall apart even then. What if a large subset of GWI is in fact ME, just ME from particular triggers? If you go back through the epidemics, ME symptoms do seem to vary a bit, cluster by cluster.

    However I do think we need PEM/PENE biomarkers to be sure of anything.
  4. Ember

    Ember Senior Member

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    I can't relate to the term "PEM," except as a warning sign.

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