The development of an instrument to assess post-exertional malaise in patients with myalgic encephalomyelitis and CFS (2018) Jason et al.

The DPEMQ questionnaire itself is available through the "supplemental material" link on the page linked in Cheshire's post. It's free to download, not paywalled:

http://journals.sagepub.com/doi/sup...sure_of_Post-Exertional_Malaise.8.20.2018.pdf

 

Leonard Jason's surname is Jason so the title needs to be adjusted

 

It think this is pretty good!

The questionnaire is a bit long, but maybe that was the intention - to capture all possible aspects of PEM first. Later studies might look for correlations with objective measures such as 2 day CPET or differentiation from other diseases and this might give clues on which aspects are vital and which ones aren't.

One remark I could make is that the questionnaire seems to presuppose some knowledge about ME/CFS. It asks for example about pacing without clarifying what it is. And it immediately asks about the onset of symptoms exacerbation after exertion. New ME-patients may not yet be familiar with this, and patients with other diseases might need more/clearer information what is intended here.

The questionnaire asks what activities cause symptom exacerbation after exertion, but this is an open question and patients might forget to be sufficiently specific about this. It might be more convenient to ask explicitly about symptom exacerbation after physical exertion and symptom exacerbation after cognitive exertion, as is already the case with emotional stress, positional changes and daily activities.

The type of symptoms during PEM could also be more specific. It for example only asks about flu-like symptoms, not specifically about sore throat, tender lymph nodes or photophobia (but it does ask patients to list other symptoms).

These are all minor/insignificant remarks though. Overall I’m pretty excited about the DePaul Post-Exertional Malaise Questionnaire. Many thanks to Jason et al. for coming up with this so fast and for interacting with patients.

 

Dr Jason posted a note on his Facebook page to say that the paper has just published

https://journals.sagepub.com/doi/10.1177/1359105318805819

 

I'm seeing posts on social media from researchers looking for ways to assess PEM in patients so I'd be interested in member's opinion of this.

 

Invite them here?

Reading our discussions should at least alert them to how devilishly difficult it is to ask the right questions - especially of people with permanent PEM - in order to clearly distinguish between post-exertional fatigue or plain exertion intolerance and ME-style PEM.

Also, they could be pointed towards Lily Chu (rather than Jason)?

 

Problem is they are looking for something to plug straight into their research project, rather than taking time to understand the issue for themselves.

Interesting, any particular reason for suggesting this?

 

I'm guessing it probably depends on what they want to assess it for? To model it, predict it, investigate potential causes of it, think about drugs for it, work out whether specific types of activity are more likely to cause it than others...? Different questions may need different levels of detail.

 

My impression is that Jason doesn't understand PEM based on his questionnaires and how he poses the questions.

 

To determine if someone is suffering from it, so as an assessment tool.

 

My opinion is that you need BOTH objective evidence (to demonstrate impaired functioning) and subjective self-reports...

 

A bit of an aside, but when it comes to research on what happens in the body during activity and the resulting PEM, the need to ask everyone to do the same thing always seems to be a bit of a stumbling block.

Do you reckon this is always necessary, especially as it isn't really the same (people can't enter a study with directly comparable levels of pre-existing PEM)? As long as each participant repeats the same activity for the same length of time, would some physical effects should still be measurable?

It would seem more inclusive of patients with ME of differing severities, and might help navigate some of the ethical issues. In particular, it might help gather less specialised measurements from larger groups, if it became clear that this could be useful.

 

Different severities and duration of illness. We don't have to be severe to have severe PEM.

 

Problem is, thanks to not enough good research, we still don't have anything ready to plug straight into a research project (at least nothing I'd consider good enough).

Because Jason's PEM questionnaires aren't specific enough to separate post-exertional fatigue from PEM and somehow he doesn't seem to get that point. Whereas Chu does.

https://bmjpaedsopen.bmj.com/content/post-exertional-fatigue-not-equivalent-post-exertional-malaise

 

What would be the best - and safest - way to objectively demonstrate impaired functioning?

 

Questionnaires should come after observation. Just thinking about it, ask test subjects to do something which raised their heart rate over the average they had over the past 5 days and note how long they had been ill and how they rate their severity.

Then, say, a phone app where you put in how you feel and what symptoms you have every hour or so for the next week. Recording heart rate would be good too.

If patients could have proper hospital observation who knows what they might discover.

More and more, I believe that PEM is the wrong way of looking at ME. It is a reflection of something that is going wrong in our bodies, including the problems with cellular respiration not a major symptom in itself.

Like a cough in lung cancer is just an obvious, superficial thing that is easily noted but is not the most important thing that is going on.