Validation of the Vienna Post-Exertional Malaise Assessment Questionnaire (V-PEM-AQ)
Dear Participant,
Thank you for your interest in our study. The aim of this investigation is to evaluate a newly developed questionnaire designed to assess
Post-Exertional Malaise (PEM) in individuals with
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and
Post-COVID-19 Condition (Long COVID).
PEM describes a
pathological worsening of existing symptoms following physical, cognitive, emotional, or orthostatic exertion that exceeds the individual’s current tolerance. It is typically characterized by a
delayed onset(often 12–48 hours after exertion) and a
prolonged recovery period lasting several days or even weeks. This reaction is distinct from ordinary tiredness or fatigue and represents a specific clinical hallmark of these illnesses.
PEM is considered a
core diagnostic featureof ME/CFS and is increasingly recognized in Long COVID, yet it has been inadequately assessed to date. Your participation will help us improve the scientific understanding and measurement of this symptom. In the long term, this may contribute to more accurate diagnosis and better-targeted management strategies.
In the first phase of our project, we developed the questionnaire, structured its content, and tested its comprehensibility in a small pilot group. In this second phase, we aim to evaluate how reliably and validly the questionnaire captures PEM and how it compares to existing assessment instruments.
What questions can you expect?
The online questionnaire takes approximately
20 minutes to complete and encompasses several areas:
- Personal Information (Sociodemographics): Age, gender, living situation, and employment status.
- Disease-Related Information:Date of diagnosis, disease progression, previous and current symptoms.
- Daily Living and Work Capacity:
- FunCap27 (Functional Capacity Questionnaire): A questionnaire measuring functional capacity, i.e., resilience and abilities in daily life.
- Symptom Burden and PEM Assessment:
- DSQ-PEM (DePaul Symptom Questionnaire):An established instrument for assessing PEM.
- Vienna Post-Exertional Malaise Assessment Questionnaire (V-PEM-AQ):The newly developed instrument now being comprehensively tested and validated.
Alternative Participation for Severely Affected Individuals
We recognize that many participants are severely impaired. Therefore, you may complete the questionnaire in multiple sessions. Should you have difficulty typing, a family member or caregiver may enter responses on your behalf.
Who can participate?
- Minimum age of 18 years
- Physician-confirmed diagnosis of ME/CFS
- Ability to read and answer the questionnaire in German or English
- Voluntary consent to participate
Voluntary Nature of Participation
Your participation is completely voluntary. You may skip individual questions if you prefer not to answer them. Additionally, you have the right to discontinue participation at any time without providing reasons and without any disadvantages.
Data Protection and Confidentiality
- All collected data will be treated strictly confidentially and processed in accordance with applicable data protection regulations (e.g., GDPR).
- The survey is conducted via the secure platform SoSci Survey; your information is anonymized and cannot be traced back to you.
- The data will be used exclusively for scientific purposes.
- Results may be published in professional journals or presented at conferences, but exclusively in anonymized form.
- No personal data such as name, IP address, or email address will be stored unless you voluntarily provide it (e.g., for future contact).
- Please note: Should you contact us directly via email or telephone, complete anonymity can no longer be guaranteed.
Ethics and Safety
This study has been reviewed and approved by the
Ethics Committee of the Medical University of Vienna(
approval number 1192/2025).
Contact
Mag.rer.nat. Ali Kapan, PhD
Medical University of Vienna – Center for Public Health
Institute for Social and Preventive Medicine
Kinderspitalgasse 15/1, 1090 Vienna, Austria
Email:
ali.kapan@meduniwien.ac.at
Telephone: +43 (0)1 40160-34608
Declaration of Consent
By proceeding with the questionnaire, you confirm:
- that you have read and understood the information on this sheet,
- that you wish to participate voluntarily in the study,
- that you know you can discontinue your participation at any time without disadvantages.
