A brief, comprehensive measure of post-exertional malaise, 2025, Jason and Chee

[Bivox]

Hei @Bivox - hyggelig å høre at du følger med her! Takk for arbeidet ditt for oss!

I seem to remember that you once mentioned (maybe at Digging Deeper?) that you always ask the children to answer first, without letting the parents talk. Is that correct?

And that children often know more about the symptoms than their parents, but that the parents often get their functional capacity more correct (children tend to overestimate how much they can do)?

In light of that, are there any adaptations for children specifically that might be necessary to make for a questionnaire that attempts to identify if PEM is present? Would the answers be less reliable if the child and parent fills it out together, compared to on their own?

Hi/ Hei
Consultation: I always greet them all, not least the parents, very friendly! Then very strict proceedings first part: You are quite correct: I always ask the first all the questions I want. Symptoms, activities/ school etc. Then parents. Then we all talk. The child/ adolescent seems to be absolutely the reliable source of symptom spectrum and severity. They often, however overestimate what they have actually done of activities. Parents seem much more precise on that. Probably that the child/ adolescent has as positive a view of life as possible, given the very tough situation. The questionnaire needs to be answered collaboratively/ discussed between patient/ close person parent.

If I have an adult couple where one has possible/ certain ME/CFS it is actually often sim liar. The close person/ spouse etc often seems to have a better overview of actual activities done - at least for some of them. But NOT symptoms!
Kristian

 

[Bivox]

Thank you for joining us, @Bivox. I agree with all you say about assessing PEM. I wonder whether we could devise a PEM questionnaire if only to stop doctors wrongly diagnosing daily fatigability as PEM.
It could be very short, much as the questions you ask your patients, and have supplementary sections asking about frequency, duration, symptom changes, function changes which may be helpful in increasing the doctor and patients understanding of how sick someone is and how well they are able to manage their activity and environment to reduce PEM, and what support they need.

Hi
There are groups of knowledgeable people now focusing on those aspects of PEM and that hopefully will result in new improved tools regarding PEM characteristics and more. I do think that including FUNCAP when charting PEM makes finding good questions like you bring forward easier to find because pressure is off trying to use PEM characteristics (including frequency and severity) as a measure of functional capacity/ disease severity.

 

[Bivox]

The symptom severity of delayed PEM for a mild/moderate patient is just as severe as severe patients, except that severe patients are more limited and may not recover from that episode while others do eventually depending on how much they exceeded their 'energy limit'

I've avoided delayed PEM for years from pacing.

Yes- that is what I see again and again..

 

[Trish]

Hi
There are groups of knowledgeable people now focusing on those aspects of PEM and that hopefully will result in new improved tools regarding PEM characteristics and more. I do think that including FUNCAP when charting PEM makes finding good questions like you bring forward easier to find because pressure is off trying to use PEM characteristics (including frequency and severity) as a measure of functional capacity/ disease severity.

That's good to hear. FUNCAP is the only ME/CFS questionnaire I trust. It would be great to have a PEM questionnaire we could trust too.

 

[Andy]

The symptom severity of delayed PEM for a mild/moderate patient is just as severe as severe patients, except that severe patients are more limited and may not recover from that episode while others do eventually depending on how much they exceeded their 'energy limit'

I've avoided delayed PEM for years from pacing.

Not in my experience. My PEM symptoms are now far more severe for me now than they were when I was mild.

 

[Mij]

I would say that my autonomic dysfunction/chest pressure has intensified over the years when I had delayed PEM. I didn't want to standup at all.

 

[Kiristar]

In comparison between now and mild. I had 3 pem symptoms centred around throats, glands and a fluey malaise when mild and I get about 20 odd now I'm severe (but not those three, which I no longer experience, I guess my immune system seems to be behaving differently now) .

 

[Simon M]

I;ve started a new thread focusing on a potential new questionnaire to identify PEM

Should we initiate development of a new, short questionnaire to identify PEM (to aid diagnosis)?​

Thanks to everyone here who has contributed to the idea, including @Trish @Kitty @ME/CFS Science Blog @Bivox

 

[bobbler]

I think a good analogy for cognitive issues in PEM is decision-making during a significant infection such as the flu or glandular fever. A lot of people can remember what that is like. There are studies of cognition during acute illness - reaction times slow, the ability to focus and hold information in short term memory decreases. Actually I think that might be a good area for us to look into - in acute illness, what aspects of cognition change, what causes it? I think there are recent studies on the biological basis of that effect.

The analogy also gets across the temporary nature of the cognitive disability. Provided someone is able to have time between episodes of PEM, it is not that the person with ME/CFS is incapable of good decision-making.

And important in underlining it isn’t a lack of capacity but requiring an adjustment might be gotten across if this point were covered really well

No one would expect to have important decisions taken out of their hands when they have flu but to work around when they feel up to it etc.

It does feel like things have very much gone backwards in the last few years of people understanding that physical exertion often causes PEM that is both physical and ‘cognitive’ (they are being taught to mix up that term with ‘mental health’ it feels deliberately too). Due to exhaustion indeed in this way they should relate to if they ever had to do a 2hour job interview in the thick of having flu.

As well of course cognitive exertion (and sensory - it’s hard to separate) causing cognitive exhaustion and … potentially PEM of a different type/set of features. But that’s a whole load of thinking trying to describe equations or estimates on how much of that causes what and how much effects. I’m not sure it’s just eg words but it might be - because the worst ones which I notice will be me not waking up the brain at all and the impact being more than just that but other symptoms too - it’s a task to remember different ones.

I don’t know if that PEM from cognitive happens in flu ?

Thing is many who ever ‘act curious’ about this one act as antagonist asking questions as if they want precise measurements on examples but then don’t actually listen to or believe the answer.

Something that could force those non me/cfs people to be asked questions about when they’ve ever been really really ill with proper flu, and then asking them to think if they could do x,y, z would be useful. I would say however that I have had to work with proper flu and do interviews. And temporarily loading up for a day with one short important thing isn’t the same thing really so that’s the risk (people remember wrongly that they just lemsipped and got on with it).

 

[Mij]

I've had delayed leg muscle exhaustion, tiredness/brain fatigue, loss of appetite during Covid infection. It was nothing like PEM.