Care 4 PAIS & ME/CFS

Medical University of Vienna in cooperation with University of Vienna and ÖG ME/CFS, sponsored by the We&ME Foundation, are conducting a study on PAIS in DE/EN.

[Care 4 PAIS & ME/CFS @Care4PAISMECFS]

We are conducting a global online questionnaire on Post Acute Infection Syndromes (PAIS) in English and German.
Who can participate?
- Anyone who has developed chronic symptoms for longer than 12 weeks after an infection or another trigger (e.g. surgery, medication, mold)

[Care 4 PAIS & ME/CFS @Care4PAISMECFS]

@Parunzel_ @oeg_mecfs Good point :) Thanx for your feedback! The link is at the bottom of the thread, but I will post it here as well: https://t.co/YuhGwLSwyZ

[Care 4 PAIS & ME/CFS @Care4PAISMECFS]

LAST CALL for Participation!

Study duration extended until January 27, 2025.

Questionnaire consists of 4 parts. If you only manage to complete 1 or 2 parts, your responses will still be evaluated!

If you have already started the survey, now is a good time to finish it :)

[Care 4 PAIS & ME/CFS @Care4PAISMECFS]

We are conducting a global online questionnaire on Post Acute Infection Syndromes (PAIS) in English and German.
Who can participate?
- Anyone who has developed chronic symptoms for longer than 12 weeks after an infection or another trigger (e.g. surgery, medication, mold)

[Care 4 PAIS & ME/CFS @Care4PAISMECFS]

@RonjaR_Ka @SabineHermisson Geplant ist eigentlich, dass die Fragebögen am 12.01. "eingesammelt" werden - d.h. man sollte bis dahin fertig sein. Evtl. werden wir es aber um ein paar Tage verlängern, damit alle, die begonnen haben, fertig werden können.

[Care 4 PAIS & ME/CFS @Care4PAISMECFS]

@ME_Vereniging Let's agree to disagree. Could you perhaps be more specific, which other thousands of conditions fulfil one of the main criteria of post-exertional malaise? It would be surprising if you could name even 10 or 5...

[Care 4 PAIS & ME/CFS @Care4PAISMECFS]

We are conducting a global online questionnaire on Post Acute Infection Syndromes (PAIS) in English and German.
Who can participate?
- Anyone who has developed chronic symptoms for longer than 12 weeks after an infection or another trigger (e.g. surgery, medication, mold)

[Care 4 PAIS & ME/CFS @Care4PAISMECFS]

@ME_Vereniging The symptoms are not random. We use the Canadian Consensus Criteria to screen/diagnose patients. The current medical literature refers to this illness as ME/CFS. The name might change in the future, but for the time being, this is how it is referred to.

[Care 4 PAIS & ME/CFS @Care4PAISMECFS]

@ME_Vereniging You are focusing too much on semantics. But what do you mean that ME/CFS is not a disease? What is it then?

[Care 4 PAIS & ME/CFS @Care4PAISMECFS]

@ME_Vereniging PAIS is an umbrella term for chronic symptoms after an infection. Since ME/CFS is also considered a type of PAIS, but in some cases may also develop after other triggers (surgery, meds), we are broadening the patient population to include them too. Relevant for subgroup analyses.

[Care 4 PAIS & ME/CFS @Care4PAISMECFS]

If you have any questions, please contact our study team under [email protected].

Please share the link https://t.co/YuhGwLSwyZ and the digital flyer with your friends, colleagues, patients and on social media.

Thank you for your help!
Meduni Wien, Uni Wien, ÖG ME/CFS

[Care 4 PAIS & ME/CFS @Care4PAISMECFS]

- Screening participants for certain conditions associated with PAIS (neuropathy, autonomic dysfunctions, POTS, immune dysfunctions, MCAS, hypermobility, PEM, fatigue) and comparing to diagnostic exams and therapies.
- Analysis of patients with PAIS fulfilling criteria for ME/CFS

[Care 4 PAIS & ME/CFS @Care4PAISMECFS]

@useless_priest We may draw your attention to our study: https://t.co/YuhGwLRYJr
We follow-up with those who agree to participate in the longitudinal continuation and will ask them how their condition changed over time. Please feel free to share our study, we would be grateful for your support!

[Care 4 PAIS & ME/CFS @Care4PAISMECFS]

@mecfsawareness @oeg_mecfs @MedUni_Wien @weandmecfs Nicht alle Untersuchungen werden von der Krankenkasse übernommen und es sind auch nicht alle Untersuchungen nötig - diese richten sich nach den jeweiligen Symptomen und erfolgen in Absprache mit dem behandelnden Arzt:der behandelnden Ärztin.

[Care 4 PAIS & ME/CFS @Care4PAISMECFS]

@erikmoldwarrior We look into ME/CFS.

[Care 4 PAIS & ME/CFS @Care4PAISMECFS]

@darkspookers @oeg_mecfs @MedUni_Wien @weandmecfs Vielen Dank für die Frage und deine Teilnahme! Bitte schreib uns an [email protected], damit wir dir ausführlich antworten können. Alles Liebe!

[Care 4 PAIS & ME/CFS @Care4PAISMECFS]

@xawwwkidx @oeg_mecfs @MedUni_Wien @weandmecfs Ja, sehr gerne. Die Erhebung ist auf deutschsprachige Länder ausgerichtet, der Fragebogen ist jedoch auf Deutsch+Englisch verfügbar, so dass auch Teilnehmende aus anderen Ländern möglich sind, die ihr Land zu Beginn des Fragebogens angeben können. Vielen Dank für die Teilnahme!

[Care 4 PAIS & ME/CFS @Care4PAISMECFS]

@MKoenighofer @oeg_mecfs @MedUni_Wien @weandmecfs Vielen Dank für dieses Feedback! Uns ist derzeit leider keine Studie für Kinder und Jugendliche bekannt, aber wir nehmen diese Anregung mit. Alles Gute!

[Care 4 PAIS & ME/CFS @Care4PAISMECFS]

@mecfsawareness @oeg_mecfs @MedUni_Wien @weandmecfs Vielen Dank für das Feedback und die Teilnahme!