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  1. Cazza

    What are the 'missing' research papers based on existing data that we wish scientists would write about ME/CFS?

    1. Review paper exploring mental health measures across different illness types (ME/CFS, MS, Lyme, etc.) and the general population. Just today I was looking for a paper showing that pwme do not experience mental health-related issues any more than the general population (not surprisingly the...
  2. Cazza

    Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

    The danger is we start defining PEM as “whatever it is that separates us from every other diseases” rather than focusing on what are the common experiences of patients with this illness in response to exertion. The fact that the " spoonie" idea is so popular suggests our issue may not be unique...
  3. Cazza

    Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

    I am coming late to this thread, and read through the first page or two, so apologies if I am restating a point already made. I ask everyone to hold up what we call PEM to the payback people experience with autoimmune diseases and EDS. I have EDS (and ME/CFS), as does my 12-yr old son (he likely...
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