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A Post of Gradtitude, Hope, and Optimism

Discussion in 'General ME/CFS Discussion' started by Jesse2233, Feb 27, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

    Southern California
    Hey everyone,

    I'm new here and have been trying to learn and contribute as much as I'm able.

    I see I'll have a lot to learn, but I want to take a moment and thank everyone for their support and kindness, and mention how grateful I am for the level of intelligence and insight on this forum

    Thank you to the support, advice, information, and hope from @Hip, @Sushi, @eljefe19, @halcyon, @Gingergrrl, @Jonathan Edwards, @deleder2k, @Hutan, @Rose49, @Ben Howell, @lauluce and everyone and anyone my tired brain can't remember right now.

    I'm also grateful to the all clinicians, researchers, and advocates working toward new treatments and a cure

    Like Lucinda Bateman said in her report last year there are a lot of reasons to be hopeful and excited:

    - Fluge and Mella are showing great promise with Rituximab and Cyclophosphamide, and based on the reports coming out of Kolibri and OMI, we have strong reason to believe Phase 3 will be a success

    - Ron Davis, Robert Naviaux, and co are making breakneck strides in identifying a biomarker, explaining the underlying metabolics / genetics, and finding existing treatments to repurpose

    - Jared Younger, Nancy Klimas, Kenny De Meirleir, Daniel Peterson, Derick Enlander, John Chia, Peter Rowe, Suzanne Vernon, and others have ongoing studies poised to show further breakthroughs

    - Francis Collins and the NIH are increasing funding and studies

    - The FDA is poised to speed up drug approval and reduce regulation increasing the odds that Ampligen and other drugs are approved

    - More broadly the converging forces of Big Data, expanding biomedical research, increased philanthropic spending, artificial intelligence, nanotechnology, personalized medicine, and genetic therapy all point to an environment where new treatments and cures are more likely than ever before

    Please add on anything I've missed!
    PatJ, Theodore, Aroa and 18 others like this.
  2. Gingergrrl

    Gingergrrl Senior Member

    @Jesse2233 It was so sweet of you to include me in your post of gratitude and hope! Your questions re: RTX have been very helpful for me to read and I am grateful to you for this and glad that you joined PR! I continue to learn new things here every day and have met several lifelong friends and am sure it will be the same for you. Am looking forward to getting to know you better in the future! :hug: :hug::hug:
    Mel9 and Hutan like this.
  3. Hutan

    Hutan Senior Member

    New Zealand
    @Jesse2233, thanks so much for mentioning me in your post. I can't imagine I said anything particularly useful and certainly I can't remember it.

    But today has been a particularly rough day for me in a number of ways. And so your kindness and reminder of the growing reasons for hope was especially lovely.

    The feeling of connectedness and understanding that I get from PR helps me keep plodding on so, yes, thank you to all who contribute here in so many ways.
    Gingergrrl and Cohen2 like this.
  4. ash0787

    ash0787 Senior Member

    well there is one thing you might have overlooked, the information landscape is totally different now to when I got ill in 2015, I remember having a hard time trying to find out what was the difference between 'post viral fatigue / PVFS '
    and chronic fatigue / ME.

    The information I remember finding was mainly anecdotal stories in tabloid newspapers such as this one
    I based my understanding of CFS heavily on this article and what the NHS doctors told me.

    I also would have definitely read the NHS page, which hasn't changed

    If you look now though on google, OMF and meassociation are quite high on the search ranking,
    I originally never heard of OMF, ron davis etc until I watched forgotten plague which wasn't until much later.

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