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

Mij said:
"Please email my Austrian colleague and me during working hours, not during weekends. I am not going to have a discussion about this in public. Please stop this conversation"
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Oh blimey, talk about being your own worst enemy. He can choose not to read work emails at weekends, and he's perpetuating the conversation by engaging.

Hopefully he'll just switch off his devices and give himself a break.
 
Its pretty clear this has all spilled out into the public because he has chosen to ignore the patients comments on the measure and now he is attacking patients in the open not surprisingly patients are fighting back. I have had just about enough of researchers doing this, using PPIE as a mechanism to rubber stamp something they were going to do anyway, to play just lip service to patient engagement and then getting cross when we complain that what they have produced is bad. This behaviour is unprofessional and he is the one that has caused it to happen and continue.
 
1/n. I want to clarify my earlier comment. I was annoyed that the patient statement about the questionnaire was not accurate and I was not involved in this patient participation step, which contributed to confusion. I’m sorry for the distress this caused...

2/n Some information shared publicly about the questionnaire and our collaboration was not accurate.There is no formal partnership or contractual agreement about publication. The posted questionnaire is also not a final tool, it is a standard step in the validation process.

3/n. We obviously won't stop our research into PEM in long covid and ME after this. My goal is to be transparent about the research so misunderstandings like this don’t arise again. I remain committed to rigorous methodology, clear communication, and constructive dialogue. Rob
 
Mij said:
1/n. I want to clarify my earlier comment. I was annoyed that the patient statement about the questionnaire was not accurate and I was not involved in this patient participation step, which contributed to confusion. I’m sorry for the distress this caused...

2/n Some information shared publicly about the questionnaire and our collaboration was not accurate.There is no formal partnership or contractual agreement about publication. The posted questionnaire is also not a final tool, it is a standard step in the validation process.

3/n. We obviously won't stop our research into PEM in long covid and ME after this. My goal is to be transparent about the research so misunderstandings like this don’t arise again. I remain committed to rigorous methodology, clear communication, and constructive dialogue. Rob
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It seems he thinks that the bit that isn't accurate is that he isn't contractually required to listen to the patients he has involved? I mean that is true but its also precisely the problem I have with these PPIE systems were patients are not listened to. I have no idea how getting patients to answer the questionnaire and not accept comments as to its issues is in any way going to help validate it. Without a comparison questionnaire or other mechanism to assess patient severity it can't be calibrated and validated. This makes no sense as an argument.

Its a good thing he has decided to stay researching ME/CFS, I appreciate the climb down in coercion and patient abuse and I hope it doesn't happen again. This is not however an apology where he accepts what he did was unacceptable. It is DARVO and that is quite concerning.

Rob's defence is "yeah but I am not obligated to listen to or change based on PPIE comments". I would not want charity research funding going his way again, I fear any patient comments with issues with be ignored and that concerns me when his studies may involve significant patient harm since he has been using exertion to induce PEM.
 
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They have included FUNCAP and DSQ PEM questionnaires as comparison. I'm not sure what that will tell them, since neither directly detects pem .

As we have seen the whole industry of questionnaire 'validation' is highly suspect. Some dreadful and useless questionnaires like the Chalder Fatigue scale and the variations on the DSQ are all supposedly validated.

For PEM as something that has to be verified in patients taking part in research, it makes more sense to me to have one or two straightforward questions as DecodeME did to find out whether pwME report getting sicker after minor activity. They don't need to know how frequent, the length of delay, the details of triggers, or how long lasting or what particular symptoms get worse if it's being used for diagnosis.

If they want to explore PEM in depth, I think it's better to ask for details of each episode separately, not muddle them together.
 
Trish said:
They have included FUNCAP and DSQ PEM questionnaires as comparison. I'm not sure what that will tell them, since neither directly detects pem
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I imagine it would tell them whether their results correlate to the results of FUNCAP and DSQ PEM.

I like their idea of trying to make a standardized simple way of identifying the differences in PEM between people. Its definitely not there yet, but I think I can see their goal and I can see something similar (but simplified) work well. Maybe they should give different forms of questionnaires based on FUNCAP scores, as I doubt its even possible to have 1 form work for the whole spectrum.

Very severe me/cfs is quite different from actual "mild" cases (eg. Someone able to work 3+ days without having to cut out self care and social activities)

I don't imagine this working for diagnosis of PEM, but for identifying differences I can see it being useful in research.
 
I feel like questionnaires about PEM need to get in the bin until someone comes up with a really new, unique, different way of looking at it.

It feels like a constant churn of “if you climb a stepladder on a Friday whilst the clouds hide the sun, do you get sick?” It’s just endless lists of “can you brush your teeth/use the toilet/work on a PhD level thesis for two hours without having a crash”

Life causes PEM.
Weather causes PEM.
Fireworks going crazy on Bonfire Night/Diwali/New Year cause PEM.
The DWP messing up my benefits causes PEM.
The cat getting sick and needing the vet causes PEM.
My friend losing her relative causes PEM.
 
MrMagoo said:
I feel like questionnaires about PEM need to get in the bin until someone comes up with a really new, unique, different way of looking at it.

It feels like a constant churn of “if you climb a stepladder on a Friday whilst the clouds hide the sun, do you get sick?” It’s just endless lists of “can you brush your teeth/use the toilet/work on a PhD level thesis for two hours without having a crash”

Life causes PEM.
Weather causes PEM.
Fireworks going crazy on Bonfire Night/Diwali/New Year cause PEM.
The DWP messing up my benefits causes PEM.
The cat getting sick and needing the vet causes PEM.
My friend losing her relative causes PEM.
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Agree. It needs quite a room if people thinking what bits it encompasses and what - probably quite unusual compared to the std - ways are those bit best tackled

Eh how do you cover the cumulative (almost always have some cumulative total behind the scenes depending on what’s been happening in preceding weeks)

Is different to needing to almost provide quite specific task instructions in order to differentiate fatiguability from PEM - and what the heck even is ‘fatigue’ and us that a jumble term for a few more specific things

And then what’s the point of any of it.

Eg which is worse:

Big PEM from a middle thing

Or getting PEM from small things

I def get cognitive PEM from physical things but is there a ‘central thing’ which is the knocking me out exhaustion slabs the ‘cognitive’ is just specific cognitive things if one day we ever get there, but it’s hard to do either physical or cognitive without ‘sensory’ or ‘orthostatic’ so you can’t ever just control for those.

Particularly as you say when there’s then the internal factors that even if I’d ever been lucky to be able to live under threshold and control my environment would make my body flip anyway - and we never know whether when we get ‘surprise more ill’ whether that’s a cold or me masquerading as a cold but with or without some obvious ‘did too much’ etc.

And do these follow ie do some either not get or not notice small PEM while it’s accumulating to create a big crash and there’s a secret plumbline that either gets hit by one bigger thing or build-up? Which is going to confuse the ideas of onset tunes and ‘size of PEM’ quite a bit


I probably don’t have a problem with people working on it but it needs to stop being people thinking they can put a deadline on it, particularly a tight one,

And realising it needs to be the truest form of exploratory research so this feedback they are getting might ‘blow their remit’ but actually maybe that’s the point - there’s always another level of technicality to the quirks of these phenomena, we just have to layer it up from the foundation bricks so people might think they’ve got it all but have just gained access to the now you get it now here is the really hard bit.

And that needs people with the right mindset and approach who are pretty observant and care and want to team work by collaborate with each other not compromise. And I underline that because the next bit is that ideally all those people will have enough years of experience they either had many different severity levels and/or situations they’ve been stuck in or managed to have some control in. And then they need to compare notes quite deeply (which is deeply exhausting hence the no deadline and the investigator being up for helping this) because there are so many phenomena and Eli-phenomenon and random one or two off things that happened to us we forget until the context stimulated us to remember that - but even if we have our own individual words to describe these things we each have different ones.

And then there’s the various different sorting variables within each episode where you try and extract what was different between two people because of severity or was it something else etc.

Then write a glossary for the whole frigging thing after having agreed some terms for the bits that are consistent across people so at least the survey uses a term and clarifies what they call what.

So I have sympathy in some ways for those diving in with some mission to do it and setting themselves targets then realising it’s exploded on them, but it’s the same classic issue we have every day of being understood.


I say all this believe it or not as someone with fascination and interest because I’m intrigued by ‘how to measure’ and experimental design

Not as it gets interpreted by too many of ‘pissing on the fire saying don’t bother cos it’s too hard’. Although don’t if you aren’t going to go at it with the wicked problem approach of having a big scoping and exploratory stage so that we can genuinely work out which bits could be isolated out or what proxy could be a measure that is good enough that we can then take it into more scientific experiments

Eg if we work out that for some people we’ve a reliable sign of exactly when PEM starts then that gives us something more than we have if we run clinical measures over time because we can plot that one thing ‘we know’ on it at least. And see what else happens around that point.

But without getting that bigger turn-off level of context to try and get head round it’s gonna be hard for someone to work out what could be misleading or irrelevant even if it is the classic ‘a piece of data we can actually get’
 
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It would be better to ask people to think of their last PEM, grade how “bad” it was then try to think what caused it.
The causes could then be grouped.

That would erase the ridiculous “oops we forgot about severe ME…just add in “does chewing and swallowing cause PEM, after where it asks whether a 2 hour walk causes it”

But even that is dumb. We don’t understand the mechanism of ME. Therefore we cannot truly know what causes PEM.
We do know what appears to contribute to it - too much exertion. Can be individual, can be cumulative.

I think this constant “can you have a seated shower without getting PEM” thing is both paternalistic and also victim-blaming a bit? Like “well if you know having a shower gives you PEM, why are you having one? You idiot!”

If I asked ancient Aztecs or Mayans or Greeks or Romans what causes a good harvest, they would tell me about sacrificing something (probably. Am not an expert). Because they had zero idea about the weather cycle, volcanic ash cloud problems, global warming, etc. Would a chart of their feedback help?
“Apparently good harvests require a sacrifice but we didn’t find any difference in outcomes whether it was a goat, chicken or human” fascinating. Meanwhile, the world turns.

So the medical community who have not even yet managed to work out what ME is, how it works etc are looking to us, the non-medical sick people, to provide them answers.
Once they have the answers they use them to bother us about not doing too much, whilst asking us to do a million pacing diaries and questionnaires and frameworks which will help us….how?

I am suprised at how angry this is making me. I think also this is not the first researcher who has indicated they “won’t help us any more” when something like push back/feedback didn’t suit.
 
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MrMagoo said:
We don’t understand the mechanism of ME. Therefore we cannot truly know what causes PEM.
We do know what appears to contribute to it - too much exertion. Can be individual, can be cumulative.
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Yip. Which is why, for research that's testing treatment interventions, I think it makes more sense to forget about PEM and use FUNCAP to measure improvements (or lack thereof).

FUNCAP includes the limitations imposed by PEM, which are a substantial part of the impairment in ME/CFS. If the treatment works people will have more function, partly because they have less PEM.

For this purpose at least, it seems to me that PEM adds an unnecessary layer of confusion. The researchers want to know if people are better, and FUNCAP—along with other measures such as actimetry—will show whether or not they are.
 
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