Open [Survey] Care4PAIS: Healthcare for patients with post-acute infection syndromes (PAIS) and diseases, including ME/CFS

[I was told this survey is quite long, like over an hour, but can be paused at any time. It’s also open to people outside of austria]
https://s2survey.net/pais/index.php?l=eng&q=base&htR=AwA=

The Following are quotes:

What do we want to achieve with this study?

This study, sponsored by the WE&ME Foundation, is being conducted by the Department of Primary Care Medicine at the Center for Public Health of the Medical University of Vienna, by the Department of Mathematics of the University of Vienna and by the Austrian Society for ME/CFS (ÖG ME/CFS). In our scientific research study, we would like to learn directly from you and your experiences and identify factors, which may be of importance to improving the current healthcare situation. Please help us with your expertise!

You can participate in this study, even if you do not know which pathogen triggered your disease or if you are not even sure if your PAIS was onset by an infection. You also do not require an official diagnosis from a doctor (you may also be self-diagnosed). You must, however, have or have had symptoms for at least 3 months, that were caused by an infection or other triggers, such as toxins, trauma or surgery.
What are the inclusion criteria?

· For legal reasons, you must be at least 18 years old.

· You are only permitted to participate once.

· You must speak English or German.

· In the case of severely affected adult patients, caregivers or confidants may entirely fill out the questionnaire for you. However, they must have an in-depth knowledge of your health situation and receive your oral consent.

· You or your confidant must agree to the data protection statement and online consent declaration form via click.

· You must be experiencing symptoms for longer than 12 weeks, which have been preceded by an infection or another trigger (e.g. toxin or surgery).

· Recovered patients, fulfilling the above-mentioned criteria, may also participate.

This questionnaire is divided into 4 parts:

· Part 1: Demographic and General Healthcare Data

· Part 2: Symptoms and Medical History

· Part 3: Diagnostic Examinations

· Part 4: Treatment Attempts and Medications

The Ethics Committee of the Medical University of Vienna has issued a positive vote on this study and on the data privacy and consent declaration forms and all its amendments (EK No.: 1515/2023).

Should you have any questions in connection to the study and concerning your rights as a participant, you are always more than welcome to contact our study coordinator, Dr. Golda Schlaff, under pais@meduniwien.ac.at. Please note that if you decide to directly contact the study team with questions about your data, complete anonymity can no longer be fully guaranteed.

Here’s the Link:
https://s2survey.net/pais/index.php?l=eng&q=base&htR=AwA=

 

Done. Yes it did take an hour and I think most people would want to break it up into chunks.

 

Well this is annoying. I got to the long part where it asks about diagnoses and if it's not completed in one go it just erases the whole section. It didn't happen in the previous sections, just this one.

Hopefully I get over the annoyance and keep at it but damn is this a long questionnaire.