advocacy

I’m creating an ME advocacy chatbot see https://tipsforme.wordpress.com/2023/03/20/grace-the-advocacy-chat-bot/ The idea is that she can help us be more prolific without using extra energy. She can help with things like writing social media posts, articles, press releases, generating new...

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...

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...

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...

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...

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...

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...

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 unperturbed, disease-resistant, curative gut microbiome. It's currently looking like fewer than 0.4% of the population qualifies: I've done DIY FMTs from 9...