S4ME: Submission to the public review on Common Data Elements for ME/CFS: Concerns with the proposed measure of post-exertional malaise

I agree...but, for me at any rate, pushing cognitively (by taking a test) when I am in PEM, would be as problematic as physical exertion when in PEM. Cognitive dysfunction is as, if not more, disabling for me as physical or bodily symptoms and will also trigger the physical type PEM.

I don't know how you could measure this without pushing the patient further into PEM.

 

In what way? If a users activity drops, or some sort of logging system?

 

Ellen Goudsmit seems to misunderstand a few things. She says "malaise is not the key characteristic of the illness" and that "an association between symptoms and minimal exertion is". Nobody is disagreeing with any of that! The term PEM does not refer to malaise only and we are not pushing for such a definition of PEM. According to our discussions and the poll, patients find the description of PEM by the NAM report to be more accurate and it doesn't revolve around malaise but is defined as

1. Exacerbation of some or all of an individual study participant's ME/CFS
symptoms. Symptoms exacerbated can include physical fatigue, cognitive
fatigue, problems thinking (e.g. slowed information processing speed,
memory, concentration), unrefreshing sleep, muscle pain, joint pain,
headaches, weakness/instability, light-headedness, flu-like symptoms, sore
throat, nausea, and other symptoms. Study participants can experience new or
non-typical symptoms as well as exacerbation of their more typical symptoms.

2. Loss of stamina and/or functional capacity

3. An onset that can be immediate or delayed after the exertional stimulus by hours or days but the exact timing is not well understood.

4. A prolonged, unpredictable recovery period that may last days, weeks, or even
months.

5. Severity and duration of symptoms that is often out of proportion to the type,
intensity, frequency, and/or duration of the exertion. For some study participants, even basic activities of daily living such as toileting, bathing, dressing, communicating, and reading can trigger PEM.

 

I think there may be another complicating factor going on here. I seem to recall Charles Shepherd once saying on PR that he is one of those PwME who does not experience PEM, and I think on another thread here in S4ME some others have said the same. Ellen Goudsmit (no 'L' in her surname note) may have worries that an important subgroup of PwME might be excluded if PEM is insisted upon as part of a diagnosis. My feeling is that if defined according to the criteria in the NAM report above, then that subgroup might not be excluded anyway, but I'm not qualified to really know that one way or the other.

Edit: Either way, I do object to her tone.

 

But given the vast majority of us do, surely it is better for research if those (seemingly) few who don't experience PEM are excluded, as opposed to not having PEM as a requirement and including many people who are (seemingly) unlikely to have ME? Or if not excluded, at least recognised and kept separate as a sub-group. Either way, you need a way that is as accurate as possible to determine if someone suffers PEM or not, so the submission still stands in my opinion.