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

Cheshire

Cheshire

Senior Member (Voting Rights)
Post-exertional malaise, or a variation of this term, is a key symptom of myalgic encephalomyelitis and chronic fatigue syndrome, as this symptom is mentioned in almost all myalgic encephalomyelitis and chronic fatigue syndrome case definitions. Until now there has not been a comprehensive questionnaire to assess post-exertional malaise. To rectify this situation, in this article we describe the development of a new questionnaire, called the DePaul Post-Exertional Malaise Questionnaire, which was based on input from hundreds of patients. Preliminary validation was provided by the findings of significant and predictable relationships between different domains of this post-exertional malaise questionnaire and physical functioning.
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http://journals.sagepub.com/doi/abs/10.1177/1359105318805819?journalCode=hpqa
 
Article said:
Clearly, there are other more biological ways to measure PEM than self-report instruments such as the DPEMQ. However, cardiopulmonary exercise assessments can be expensive, and 2-day exercise challenge cannot be assessed for those who are most impaired. Therefore, inexpensive and easy to administer self-report scales have several benefits, however, there is still a need to validate such scales with more objective and biological markers of ME and CFS.
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Article said:
The creation of this PEM instrument relied heavily on input from hundreds of patients, and this type of research is within the rubric of community-based participatory research.

This type of participatory work has infrequently occurred in the ME and CFS fields, where names given to the illness, case definitions, and treatment modalities have generally been determined by federal agencies or scientists, with minimal input from patients or patient organizations.

However, there are multiple benefits from engaging in research that is more participatory and collaborative (Jason, 2012), as patients often have a unique experience base that is not available to those who have not directly experienced the illness, and particularly for symptoms like PEM that are so different from what occurs among healthy individuals or many other chronic illnesses.
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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.
 
Andy said:
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.
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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)?
 
Ravn said:
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.
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Problem is they are looking for something to plug straight into their research project, rather than taking time to understand the issue for themselves.

Ravn said:
Also, they could be pointed towards Lily Chu (rather than Jason)?
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Interesting, any particular reason for suggesting this?
 
Andy said:
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.
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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.
 
Ravn said:
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)?
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My impression is that Jason doesn't understand PEM based on his questionnaires and how he poses the questions.
 
Kitty said:
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.
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To determine if someone is suffering from it, so as an assessment tool.
 
Snow Leopard said:
My opinion is that you need BOTH objective evidence (to demonstrate impaired functioning) and subjective self-reports...
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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.
 
Andy said:
Problem is they are looking for something to plug straight into their research project, rather than taking time to understand the issue for themselves.
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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).
Andy said:
Ravn said: ↑
Also, they could be pointed towards Lily Chu (rather than Jason)?
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Interesting, any particular reason for suggesting this?
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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.
I wish to re-emphasize that post-exertional fatigue is not equivalent to post-exertional malaise. As described in the NAM report, PEM is not only increased fatigue following activity but also involves exacerbation of other symptoms, like muscle/joint pain, problems sleeping, headaches, cognitive dysfunction, sore throats, tender lymph nodes, and flu-like feelings (1). Furthermore, PEM can be delayed by hours to days relative to the triggering event and last hours, days, and even longer. In a recent survey (4) of almost 800 patients, over 90% endorsed the NAM’s description of PEM. In contrast, almost 70% felt that Dr. Jason’s conception of PEM, with its focus on fatigue (5) and lack of time-related characteristics, did not match their experiences. If PEM is conceived of as only post-exertional fatigue and chronological traits are not accounted for, study participants who do not actually experience PEM may be mis-classified as fitting the SEID criteria. The NAM report recognized that, currently, no short, accurate questionnaire exists for identifying PEM and strongly urged development of one.
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https://bmjpaedsopen.bmj.com/content/post-exertional-fatigue-not-equivalent-post-exertional-malaise
 
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.
 
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