Open Validation of the Vienna Post-Exertional Malaise Assessment Questionnaire (V-PEM-AQ) – Rob Wüst

Chandelier

Chandelier

Senior Member (Voting Rights)

ME/CFS & Long COVID patients: we need your help! We’re validating a new tool to measure post-exertional malaise (PEM). Current questionnaires don’t capture its severity or impact. Your input changes that!​
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Nov 20, 2025 · 1:45 PM​
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The survey takes 20min to fill out.
Here are all infos from the survey page:

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.
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Took me about 30 minutes (including breaks) to complete. Especially the questions where you have to put specific amounts of how severe your PEM is and how long they last was trickt, as I do not constantly track my PEM.

I had to check my calender to make any sense of it, I think the option to use percentages or the requirement that you track your symptoms would make it easier.
 
Mij said:
Unfortunately, I'm unable to fill this form out based on 8 week 'crashes'. It doesn't apply to my disability.

They are going to miss out on mild/moderate pwME who experience severe delayed PEM that pace to avoid it.
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You should send feedback!

At the bottom of the page https://www.soscisurvey.de/V-PEM-AQ_english/ is an email address.

I sent feedback because like you I believe the questionnaires is constructed poorly for patients at the milder end.

It has the usual problem of separating activities into "does not trigger PEM" and "triggers PEM" when PEM as I know it is rarely caused by single specific activities simply because I learn to avoid those quickly. It's the combined effect of all activities.

It does give some attention to avoidance of PEM via pacing but not enough in my opinion.

As it stands the questionnaire seems overall worse than Funcap.
 
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OrganicChilli said:
You can just think back to an 8 week period where you experienced crashes.
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I've been doing really well the last 3-4 weeks, going out power walking every second day and I feel as though I didn't even exercise the next day. I'm going out shopping tomorrow while this good streak lasts. Who knows what next week will bring?

It's not that straight forward for those who are mild/moderate. When my immune system acts up(lack of a better word) I'm unable to walk too far and I try not to use up my cognitive energy b/c it's limited. I don't consider this a 'crash' or PEM.

I'm going to email them as Hoopee recommended.
 
My condition does fluctuate, but my delayed PEM does not. It follows the same distinctive onset, symptom pattern, and duration for the last 25+ years not matter how good I feel. I have an energy limit/window and stay strictly within that window, but sometimes I don't feel too bad if I overdo it a bit.

I've had ME for 34yrs, and answering a questionnaire based on the last 8 weeks isn't going to provide them any data on my experience.
 
The last time I attempted a work-like day I ended up feeling unwell on the same day and with 2 days of PEM. This inability to work normally, which is mainly due to PEM would barely register on this questionnaire.

I can get the same effect from multiple different activities over the course of the day with a similar combined effect on exertion but this would not be detected by questionnaires that ask about the effect of individual activities.

I'm constantly trying to adjust my activity patterns to avoid PEM. The moment a single specific activity consistently produces PEM I avoid it, therefore it's not particularly useful to ask me how often that activity triggered PEM in the last 8 weeks.

This questionnaire seems like it's made for people who haven't yet learned to manage PEM, or who live in conditions where they cannot avoid it, or who are so sensitive that it becomes hard to avoid PEM even with the slightest exertion.
 
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Negative feedback on BlueSky about this questionnaire:

Page by @valebodi.bsky.social

⚠️⚠️⚠️ Several #pwME have started to take this questionnaire only to find it poorly worded and PEM inducing. The researcher who has posted the call on X, Prof. Rob Wüst, is absolutely serious & trustworthy, as I am sure his colleagues involved in this are too, but I wanted to alert our community...
skywriter.blue

valebodi.bsky.social​

@valebodi.bsky.social

⚠️⚠️⚠️ Several #pwME have started to take this questionnaire only to find it poorly worded and PEM inducing. The researcher who has posted the call on X, Prof. Rob Wüst, is absolutely serious & trustworthy, as I am sure his colleagues involved in this are too, but I wanted to alert our community ⚠️⚠️⚠️
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I have done the questionnaire. I can see they are recognising the difficulty in capturing data on PEM, I think the questionnaire reflects a good understanding of what PEM is, but by focusing too much on how frequently you have PEM in 8 weeks, they are complicating the type of questions they needed to ask.

I think it would be better to ask pwME to think of the range of PEM episodes they have and fill in info about a really bad episode and less bad episode. For each to fill in its duration, what you think triggered it, and its effect on symptoms and function and how often in the last year or so you have had bad and less bad PEM.

Their questionnaire is way better than the DSQ one which is about muscle fatigability and tiredness, not PEM.

Comparison with FUNCAP is not a fair comparison, since FUNCAP doesn't claim to measure PEM specifically, it's a functional capacity questionnaire, though it is probably useful for their study as a gauge of illness severity.
 
I went back to answer the questionnaire. I have emailed them with a simple explanation about my experience, and that how I am feeling on any particular day does not dictate the severity of delayed PEM when I go over my energy expenditure. I am mild/moderate and still experience severe delayed PEM for over 25+ years. I want them to understand this and not read into something that isn't occurring. I don't have comorbidities or experience pain.
 
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I’ve copy-pasted the questions about PEM triggers below. The later questions are formatted weirdly when copying, so others will have to do those. My brief comments are in quotes to make it more readable.

Vienna Post-Exertional Malaise Assessment Questionnaire (V-PEM-AQ)​

Instructions for Participants​

When answering, please think about a typical day in the last 8 weeks – not a particularly good or bad day.

Question 1: Crashes After Exertion​

What is a crash?
Your health condition deteriorates significantly after physical, mental, or emotional exertion.

Key characteristics:
  • The deterioration usually occurs after a delay, but sometimes immediately.
  • Rest or sleep does not lead to full recovery.
Examples of exertion:
  • Physical: sports, housework, climbing stairs, normal daily tasks
  • Mental: concentration, difficult tasks
  • Emotional/Social: stress, demanding conversations, strong emotions (e.g., joy, anger), receiving visitors, meeting many people
  • Environmental stimuli: bright light, loud noise, strong smells (often even normal stimuli are sufficient)
  • Orthostatic (position changes):standing, sitting upright (even briefly), changing position – as in Postural Orthostatic Tachycardia Syndrome (POTS)
QUESTION 1: HOW OFTEN DID YOU EXPERIENCE SUCH A CRASH IN THE LAST 8 WEEKS?

Please select one answer:

Continuously – new deterioration begins before the previous crash has ended

Almost daily – 4–7 days per week

Several times per week – 2–3 times per week

About weekly – approximately once per week

Rarely – 1–2 times in the last 8 weeks

Never – no such reactions

I hope this will not be used to determine if you have PEM or not, because it essentially asks about how well you’ve been able to pace and how much outside factors have affected you.
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QUESTION 2A: DURING THE LAST 8 WEEKS, AT WHAT LEVEL OF EXERTION DO YOU USUALLY EXPERIENCE A CRASH? SELECT ONLY ONE LEVEL FOR EACH TYPE OF EXERTION THAT BEST DESCRIBES YOUR SITUATION.

TYPE OF EXERTION: PHYSICAL ACTIVITY

Basic personal care – brushing teeth, dressing, using toilet

Walking a few steps, standing for 2–5 minutes

Showering while seated, light housework, approx. 5–15 minutes

Short walk, climbing stairs, approx. 15–30 minutes

Longer walk or housework, approx. 30–90 minutes

Athletic activity with significant exertion, >15 minutes

No deterioration

I think we need instructions for how to calculate here. Am I to assume that this is activity that’s added to my normal routine? The ALL CAPS is very annoying and not ME/CFS friendly.
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QUESTION 2B: DURING THE LAST 8 WEEKS, AT WHAT LEVEL OF EXERTION DO YOU USUALLY EXPERIENCE A CRASH? SELECT ONLY ONE LEVEL FOR EACH TYPE OF EXERTION THAT BEST DESCRIBES YOUR SITUATION.

Type of Exertion: Mental / Cognitive Activity​


Reading short texts, watching a brief TV sequence

Short conversations, text messages, 5-minute phone call

Reading a book, longer conversation, writing an email

Filling out forms, focused cognitive work (approx. 30 minutes)

Extended cognitive work (from approx. 2 hours)

Full workday with sustained mental/cognitive demands

No deterioration

QUESTION 2C: DURING THE LAST 8 WEEKS, AT WHAT LEVEL OF EXERTION DO YOU USUALLY EXPERIENCE A CRASH? SELECT ONLY ONE LEVEL FOR EACH TYPE OF EXERTION THAT BEST DESCRIBES YOUR SITUATION.

Type of Exertion: Environmental Stimuli​



Dimmed light, very quiet environment (30 minutes)

Normal daylight, quiet environment (approx. 1 hour)

Bright rooms, typical everyday noises

Outdoors without protection (e.g., without sunglasses/ear protection), moderate stimulus exposure (approx. 2 hours)

Loud environment, e.g., supermarket or café (approx. 1 hour)

Concert, cinema or party with many stimuli

No deterioration

QUESTION 2D: DURING THE LAST 8 WEEKS, AT WHAT LEVEL OF EXERTION DO YOU USUALLY EXPERIENCE A CRASH? SELECT ONLY ONE LEVEL FOR EACH TYPE OF EXERTION THAT BEST DESCRIBES YOUR SITUATION.

Type of Exertion: Emotional / Social Stimuli​


Small surprise, slight anticipation

Receiving visitors, brief appointment

Doctor’s visit, dealing with authorities, minor conflict

Important conversation with intense topics

Conflict conversation, distressing news

Family celebration or large event

No deterioration

QUESTION 2E: DURING THE LAST 8 WEEKS, AT WHAT LEVEL OF EXERTION DO YOU USUALLY EXPERIENCE A CRASH? SELECT ONLY ONE LEVEL FOR EACH TYPE OF EXERTION THAT BEST DESCRIBES YOUR SITUATION.

Type of Exertion: Positional Changes​


Already when sitting up or turning in bed (after a few minutes)

Sitting on edge of bed (less than 10 minutes)

Sitting on a chair (more than 10 minutes)

Standing briefly, performing simple tasks (5 minutes)

Prolonged standing or walking (30 minutes)

Using public transportation

No deterioration
 
I think Q3 has some issues that made me unable to answer it. The milder versions of crashes are way above my baseline - apparently a moderately limiting crash still allows you to do cooking.

Q4 gets very difficult to fill out because you have to cross reference Q3.

Having to type in numbers is also cumbersome, it should have been a scale of 1-5+.
 

Question 7: How Well Does Pacing Work for You?​

QUESTION: HOW WELL CAN YOU AVOID CRASHES THROUGH PACING?

Please select one answer:


Very well – I have no or almost no crashes anymore as a result

Well – I have significantly fewer crashes as a result

Moderately – it helps somewhat, but I still have regular crashes

Hardly – I still have frequent crashes

Not at all – I have just as many crashes as before, despite pacing

——

Is this asking about how well I’m able to implement pacing or how well it works in avoiding crashes?

I can pace perfectly and still get PEM if the temperature is too high. Not much I can do about that.
 
Filling out FUNCAP without having the scoring options visible for each question is just horrible. How am I supposed to remember what 2 or 3 is? They did not think the design through for this part, please do it like the original does it.

Edit: the numbers in the answers are also in the reverse order of the numbers in the explanation.

Edit2: I’m able to select multiple numbers per question.
 
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While this may be an improvement on DSQ-PEM I think it is premature. We need some more preliminary research before a new questionnaire is designed specifically to determine what type of questions will discriminate best between PEM in ME/CFS; fatigue & fatiguability in other conditions: chronic illnesses where fatigue is a significant component, such as MS; deconditioned patients, such as post-ICU cases; things like DOMS; and people with post-viral fatigue after a bad bout of glandular fever or shingles that do not have ME/CFS. A wide variety of patients really need to be screened for their symptom experiences in order to develop the questions that discriminate best between these groups.
 
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