advocacy

  1. Phoenix Rising Articles

    Article Part 2: The Challenge of Standing up for Patients in Mexico

    Part 2: The Challenge of Standing up for Patients in Mexico In the second of a three-part series, people describe the challenges of pursuing fundamental rights for patients with neuroimmune diseases in Mexico. If you haven’t already read the first part of this series, click here. Patient...
  2. frozenborderline

    Updates on Long covid NIH funding and concerns from advocates

    The NIH seems to drag their feet even when congress literally hands them a huge pile of money. It really makes me wonder if it would even matter if our disease got huge amounts of funds , as even if congress allocated it, the NIH has to care enough enough spend it well... this is really...
  3. nerd

    Google Trends not showing increased awareness for CFS/ME

    I created this plot to analyze if COVID-19 somehow contributed to an increased awareness for CFS/ME. The latest Google Trends data show increased searches for Long COVID in Google and YouTube - multitudes greater than for CFS/ME. There is no increased awareness for CFS/ME from Long-COVID...
  4. frozenborderline

    Website about koroshetz, need help

    Hi all I'm working on a website about Walter koroshetz, Sort of continued off the #notenough4ME campaign from a couple years back that focused on koroshetz failure to do the right thing for ME/CFS funding at the NIH I need help with web design and even writing copy I already have the domain...
  5. bspg

    A Medical Abuse Hotline is Coming

    Hey everyone! I learned of this recently and wanted to share here. An organization called Health Justice Commons is starting the first ever Medical Abuse Hotline and is seeking donations to get started. The hotline will be available for anyone to use (I think this is US only?) and they hope to...
  6. Jackb23

    Letter Bank

    Hello, I came down with EBV in 2015 and I haven't been the same since. Of all my symptoms, cognition is by far the most troublesome. I am still relatively mild (8 on a scale of 10) but life is still very hard to say the least. I have tried many drugs, supplements, and have even done a...
  7. MaximilianKohler

    Who to contact to get an FMT clinical trial with high quality donors?

    I've been following the microbiome literature daily for 4+ years while cataloging it all into this wiki: https://old.reddit.com/r/HumanMicrobiome/wiki/ There is tremendous support for FMT being close to a panacea with the major caveat being that the donor is in perfect health, with an...