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

"Dear OG, if you want to argue in public with scientist that are looking for a cure and treatment for your disease, it would be helpful to be supportive. Comments like these are extremely discouraging, and we will stop on Monday with research into ME/CFS if this continues. Danke"
 
Utsikt said:
Can you describe what’s happening for people not on Twitter?
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The Austrian Association said this
Appell: So gelingt Partizipation nicht. Was ihr über den V-PEM-AQ wissen solltet! Die ÖG ME/CFS hat den Fragebogen fachlich intensiv beraten, war aber nicht inden weiteren Prozess und nicht in die Veröffentlichung eingebunden. Wir haben im Entwicklungsprozess umfangreiche inhaltliche Unterstützung geleistet. Dazugehörten Strukturvorschläge, methodische Rückmeldungen, sprachliche Präzisierungen und Hinweise zu realistischen Belastungsstufen aus der klinischen und patientennahenPerspektive. Die nun veröffentlichte Version wurde jedoch ohne vorherige Abstimmung undohne Abschluss der notwendigen Validierungsschritte online gestellt. Warum ist das relevant?Fragebogeninstrumente zu PEM müssen höchsten methodischen, ethischen sowie wissenschaftlichen Standards entsprechen. Teams wie jene hinter dem Funcap55 habengezeigt, wie viel sorgfältige Arbeit, Validierung, Testung und iterative Überarbeitungnotwendig ist, bevor ein Instrument breit eingesetzt werden kann. Ohne eine solche Validierung ist ein Fragebogen nicht belastbar.Unvalidierte Instrumente können zu Missverständnissen über PEM führen, falscheRückschlüsse fördern und wissenschaftliche Erkenntnisse verzerren. Das schadet am EndeBetroffenen, Forschung und Versorgung. Was bedeutet das für euch?Die aktuell veröffentlichte Version des Fragebogens erfüllt nach unserem wissenschaftlichenVerständnis die Anforderungen an ein qualitätsgesichertes PEM-Instrument nicht. Wirempfehlen daher, ihn nicht als diagnostisches Hilfsmittel, Studiengrundlage oderEntscheidungshilfe zu verwenden. Wie geht es weiter?Wir setzen uns weiterhin dafür ein, dass PEM korrekt, evidenzbasiert und patientennah erfasst wird und dass Instrumente erst dann in Umlauf kommen, wenn Validierung, Qualitätssicherung und Peer-Review abgeschlossen sind.Schreibt eure Fragen gern in die Kommentare.
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English LLM Translation:
** Notice: This is not how participation works. What you should know about the V-PEM-AQ!**

The Austrian ME/CFS Society (ÖG ME/CFS) provided extensive expert consultation on the questionnaire but was **not involved in the further process** or its publication. During development, we offered comprehensive support, including structural suggestions, methodological feedback, linguistic clarifications, and insights on realistic workload levels from clinical and patient-centered perspectives. However, the published version was released **without prior coordination** and **before completing the necessary validation steps**.

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** Why does this matter?**
Questionnaires assessing Post-Exertional Malaise (PEM) must meet the highest methodological, ethical, and scientific standards. Teams like those behind the Funcap55 have demonstrated the extensive work, validation, testing, and iterative revision required before an instrument can be widely used.

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** Without such validation, a questionnaire is unreliable.**
Unvalidated tools can lead to misunderstandings about PEM, promote incorrect conclusions, and distort scientific findings. Ultimately, this harms patients, research, and healthcare.

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** What does this mean for you?**
The current version of the questionnaire does **not** meet the quality standards for a PEM assessment tool, according to our scientific understanding. We therefore **advise against** using it as a diagnostic aid, research basis, or decision-making tool.

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** What’s next?**
We remain committed to ensuring PEM is assessed accurately, evidence-based, and with patient input. Instruments should only be released after validation, quality assurance, and peer review are complete.

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**Feel free to post your questions in the comments.**
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Here’s the xcancel link if anyone wants to dig further into the thread without touching “X”.

Rob Wüst (@RobWust)

Dear OG, if you want to argue in public with scientist that are looking for a cure and treatment for your disease, it would be helpful to be supportive. Comments like these are extremely discouraging, and we will stop on Monday with research into ME/CFS if this continues. Danke
xcancel.com xcancel.com
 
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We have a problem of several different groups trying to create PEM questionnaires with varying success or failure.

I think the dePaul one is hopeless as it focuses only on fatigabiity and tiredness, not PEM.

This one is much better, in that it works from a starting point of a much more accurate description of PEM, but as with the new MEA one by Sarah Tyson's team, the questions are structured in a way that makes them not create an accurate record of the multifaceted nature of PEM episodes.

By trying to combine into one questionnaire, triggers, delay, duration, severity, symptoms and change in function for varying numbers of episodes of PEM into a single set of questions, the picture can end up in a muddle.

I found myself fudging the numbers to try to fit their questions for a series of episodes I can't remember in detail, and often don't have a clear idea of one specific trigger.

If they are going to ask about multiple episodes of PEM, I think each episode needs to be looked at separately with its trigger, delay, duration, symptoms, severity, loss of function and comparison with before and after the episode.

They could ask for one or two different episodes, perhaps your worst and milder or briefer episodes of PEM, then a number for how many times this sort of episode has happened over the last x weeks or months.

I understand the team that produced FUNCAP are working on a PEM questionnaire too.
 
Mij said:
"Dear OG, if you want to argue in public with scientist that are looking for a cure and treatment for your disease, it would be helpful to be supportive. Comments like these are extremely discouraging, and we will stop on Monday with research into ME/CFS if this continues. Danke"
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Oh dear, I hope Rob Wust doesn't stop his research. Perhaps this is an example of someone trying to do too much. Maybe better they stick to what they are good at, which is biological research, and leave the team that did FUNCAP to develop a PEM questionnaire.
 
Kitty said:
It sounds like the response of someone who's got too much on and is having a bad day. At least some of the points raised by OG are reasonable, if made a bit heavy-handedly.
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To be a bit heavy-handed: it sounds like the response of someone who’s more concerned about following a schedule than to get the questionnaire right.

If there were major objections from the patients they chose to involve, and they just went ahead with the publication regardless, it’s a huge red flag.

And judging by the questionnaire, they do not have a good enough understanding of what PEM is like and how it impacts you. This errors should have been caught in internal testing. Letting them go through to the live version is inexcusable, unless they are planning on doing a FUNCAP-style iteration process (which they have not given any indication that they will do).

My guess is that they have been told or decided that they need to capture PEM in their studies, and this is a way to tick that box.
 
Utsikt said:
My guess is that they have been told or decided that they need to capture PEM in their studies, and this is a way to tick that box.
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Yep, and if that's what they're aiming for, they need to say so.

Capturing day to day PEM in a spectrum of people ranging from young to old, mild to severe is a different project, especially as those answering may be doing their best to avoid PEM. They'll be filling it in from memory, not today's experience.

A trial cohort would likely be a narrower range of people who'd be behaving differently to the way they do usually. Anyway, surely function is the best measure of whether an intervention worked, as in FUNCAP? PEM's one of the ways a reduction in function presents; it's difficult to isolate it from everything else in ME/CFS because it's a collection of symptoms, some of which are also present outside PEM.
 
This is a really bad attempt and I am quite upset. Why do researchers skip the most important steps - the qualitative talking to patients steps?

They're trying to shoehorn multifaceted experience into a stupid questionnaire and I am quite disappointed at how bad it is.
 
I’m a bit confused about why this whole drama unfolded?

In the introduction text of the questionnaire it says:
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.
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So if the feedback from this second phase turns out to be negative, they would go back to the sketching board anyway, no?

But then why does the austrian ME/CFS society publish this statement:
However, the version that has now been released was put online without prior coordination and without completing the necessary validation steps.
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And why does Rob Wüst respond with a meltdown instead of pointing to the questionnaire’s introductory text?
 
I imagine there was a lot of correspondence behind the scene between the ÖG and Rob that makes this more clear.

Without that context, its really hard to know whose in the right or wrong. They also both probably have access to the future plans which aren’t out in public.
 
I’m a firm believer in that in science, you either have to be completely committed to doing things good enough, or you shouldn’t do it at all.

Judging by the S4ME discussions about initiating the creating of a PEM questionnaire, I’m not sure it’s possible to succeed, or that it’s even needed.

I would be very interested in hearing Wüst et al’s thoughts on the matter.

On a different note, the last question was about which questionnaire you liked the most. In this survey, they botched the presentation of FUNCAP and made it incredibly difficult to fill out in a survey form by not listing the answers with each question, and by listing the numbers in opposite order in the explanation and the answers. This will make FUNCAP look worse than what it really is.

The actual FUNCAP questionnaire gives you a table to fill out so it’s easier to keep track of what the scores mean. They also list the answers in the same order (although in different orientations).

I think it’s simply inexcusable to change the format of someone else’s questionnaire to the worse.

Visible has already shown how you can adapt it to a survey mode:
IMG_0473.jpeg
 
Utsikt said:
Judging by the S4ME discussions about initiating the creating of a PEM questionnaire, I’m not sure it’s possible to succeed, or that it’s even needed.
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Me neither, I don't understand what the questionnaires are really for. And then there's the problem of defining something that slips through your fingers like mist.

Discussing PEM as a symptom of ME/CFS in the context of diagnosis or management is very different to attempting to measure it.
 
Questionnaires about chronic illnesses are generally helpful for clinical care and management. I'm not so sure about research though?

If it's poorly designed and interpreted in a biased way, it can be harmful to the patient.
 
I understand Rob Wust frustration after reading a few responses. One response to Rob Wust, "Sir ,I MO it would be best to just say that you had a very bad day (a few of them) and that you are sorry that this influenced your reaction to people's suggestions, and that you are happy to evaluate them once more. Many of us have plenty of bad days and most will understand it"

Please stop this if you're sending him messages like this on X.
 
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