Looking to pool patient experiences with ME/CFS treatments

[glenn_chan]

Hi, I am currently conducting a survey on how patients respond to the different treatments that they try.

SURVEY LINK

Goals of the survey:

1. The survey will generate a 'customer satisfaction' list of the treatments that ME/CFS patients are trying. That list will look something like this:
   
   
   
   
   
2. The survey will help understand the similarities and differences between ME/CFS, Long COVID, and Post COVID Vaccination Syndrome. So far, results from Long COVID and COVID vaccine injured surveyees strongly suggest that rates of Post Exertional Malaise are very high in both groups. Both reported very negative experiences from intense exercise. Preliminary analyses can be found here and here.

Your help would be appreciated in finding answers for ME/CFS and other chronic illnesses.

SURVEY LINK
*Note: You will need to sign into your Google account so that you can edit your responses later, e.g. if you try more treatments. Your name, email, and Google account will not be collected. Thank you!

 

[Creekside]

For the treatment questions, you should make it clear that it's referring to ME symptoms only, since many of those treatments might have nasty side effects unrelated to ME.

 

[glenn_chan]

It's good to know everything, but I wanted to keep the survey short because some people have serious limits as to how much mental work that they can do. I wanted to prioritize both illness-related symptoms AND side effects... since most people are interested in both. They want to know if the benefits outweigh the downsides. Hence the question is worded to ask about "overall" improvement/worsening.

More granularity would be nice to have. I do agree with you that it would be good to know about ME symptoms only.

 

[tatt]

I forget my google log in, I have ME remember, so wont be doing your survey. I like to see details of research BEFORE I'm asked to do anything that might provide identifying information. Also like to know who is conducting the research and why before I decide whether to trust them.

I havent hung out on these forums for quite a while as I was too ill - you wont reach the people with more severe ME this way.

 

[glenn_chan]

Survey results have been published here:

What worked for 27 people who recovered - Feb 2023

If you have 5-10 minutes, please fill out the latest survey (Patient Experiences Survey): https://docs.google.com/forms/d/e/1FAIpQLSchmUvj90M8dJdSyUhQcEboBjCa-Sw9BDbY5msC6H7muBJXYw/viewform?usp=pp_url...

odysee.com

Thank you to everybody who contributed their data!