Wanna say Thanks + Questions + Improvements

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Hello everyone!

This is my very first time posting here. To quickly introduce myself: I’m 22 years old, have a passion for computer security, and study IT Security in Germany, currently doing my master’s degree. I’ve now been suffering from intense brainfog and fatigue for 2 years now and have only been partially able to work and enjoy life.

First of all, I want to drop a big THANK YOU to @glenn_chan and everyone contributing here. The amount of work you’re putting into this is truly stunning. I myself try to stay on top of scientific publications but with a limited understanding of medicine and brain fog + fatigue, this can be stressful. So again, THANKS!
I am very sure that many more people who might only passively engage find this very helpful.

I’ve structured the rest of my post with headings so its easier to follow my thoughts.

Improvements

  • I found it a bit cumbersome to find the 2023 and 2024 patient survey result posts. As this could just be the most searched posts, why not create a pinned “index” post called "Patient Suveys’ that links to each one. The benefit of this would also be that more people would immediately know they could take part in the next survey

Questions

  • Aside from sharing, is there another way to support this project?

To everyone reading this, have a lovely day!
Maxi

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I tried tagging the relevant posts with survey. Topics tagged survey

I don’t know if that’s the most organized way of putting all of those posts in one place. Maybe I should do a better job at that haha. I’m still trying to recruit for the current survey- see this thread.

Aside from sharing, is there another way to support this project?

The biggest share that can be done right now is to share the survey in large Long COVID Facebook groups. There are many groups with thousands of members or more. Unfortunately I just haven’t gotten a lot of traction in terms of getting the word about the survey results and survey recruitment.

There are other ways to help, but Facebook outreach is by far the biggest gaping hole. I’d also like to reach more ME/CFS patients but most of the groups gatekeep so I guess that demographic will go under-researched.

:wave: Welcome to the forum! And it looks like your content about fasting got chopped off :confused:

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