Patient Experiences Survey | We will research our chronic illnesses if the government won’t do it!

[glenn_chan]

I will be collecting data on what treatments are and aren’t working out. The survey is below and takes only 5-10 minutes:

Patient Experiences Survey

The pre-filled link above will help track patient demographics.

This survey will help us with data on newer treatments like natural anticoag, spike protein detox, etc. The medical establishment may have abandoned us but we have each other. Let’s pool our data and start pushing for effective treatment.

Thanks!

Results from last year’s survey have been published:

• A data-driven approach to Long COVID and COVID vaccine injury treatment (November 2022)
• What worked for 27 people who recovered - Feb 2023
• Has anybody tried ___? Here's how you can get answers to that question fast

[Csarm]

Can I share the survey with an injured friend who’s not a member of this community?

[glenn_chan]

Yes, go for it!

You can also invite them to join this community

[Csarm]

Great! How can I invite them?

[glenn_chan]

Method A:

Tell them to go to https://forum.sickandabandoned.com/ and sign up for an account

Method B (advanced):

Click on your avatar icon (C) in the top right. Click on profile.

Then click on the invite tab. And then the invite button. Type in their email, click on one of the buttons below to email them the invite.

[Csarm]

Amazing Glenn! Thanks

[glenn_chan]

Info for those who would like to help recruit for this survey

The link to the survey will look something like this:
https://docs.google.com/forms/d/e/1FAIpQLSchmUvj90M8dJdSyUhQcEboBjCa-Sw9BDbY5msC6H7muBJXYw/viewform?usp=pp_url&entry.1840324711=Long+COVID+support+group

You can edit the last chunk of the link to say anything that you want. It will prefill the “How did you find out about this survey?” question so that there is better demographics data.

When you change the link, you can keep it simple and just mention two things:

1. The platform, e.g. Discord, Facebook, Reddit, Twitter, etc.
2. The name of the group or the social media handle of the person recruiting.

Thank you!!!

[glenn_chan]

Frequently asked questions

Where will the results be posted?

The previous survey’s results can be found here:

• A data-driven approach to Long COVID and COVID vaccine injury treatment (November 2022)
• What worked for 27 people who recovered - Feb 2023
• (Data dump) Has anybody tried ___? Here’s how you can get answers to that question fast

This survey’s results will be posted in this forum and at SickAndAbandoned.com/Research/. You can also find other research on that page such as the Risk Factors Survey.

Preliminary results for the PES:

• What helped the most
• Data dump + top treatments.

What happens with my privacy?

The survey doesn’t collect certain personally-identifying information such as your name. Please don’t put such information into the survey. Don’t put in the name of your doctors.

Sometimes, it is possible to connect the survey data to a person based on the time that the survey was completed. This is because some people fill out the survey and then post “Done!” in a support group. Somebody with access to the survey data could theoretically connect the two. However, the survey data will be de-identified if it is shared with other researchers or published publicly. Steps will be taken to protect your privacy.

[glenn_chan]

The data dump for the PES is now available! Please see the second post in this thread.

[glenn_chan]

The results have been posted!

How 36 people recovered from chronic illness (data on Long COVID)

Slides: Patient Experiences Survey – Sick and Abandoned

For PSSD (Post SSRI Sexual Dysfunction) relevance, see this Reddit post.