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

[Adrian]

Cannot properly identify with what she means here. Although much of PEM is subjective, not all of it is. And although it is right to be very wary of trying to measure subjective parameters, to dismiss them altogether seems silly; how else could you evaluate someone's perception of their pain for instance, whatever the underlying condition?

I think I would prefer an approach using activity monitoring I assume PEM would show as a dip in activity. But then if that could be coupled with other symptom data such as cognitive tests, measures of pain etc then may be that would help.

 

[Invisible Woman]

I think I would prefer an approach using activity monitoring I assume PEM would show as a dip in activity. But then if that could be coupled with other symptom data such as cognitive tests, measures of pain etc then may be that would help.

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.

 

[Adrian]

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.

Nor me but I did wonder about things like looking at computer activity.

 

[Invisible Woman]

Nor me but I did wonder about things like looking at computer activity.

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

 

[Hoopoe]

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.

 

[Barry]

Ellen Gouldsmit 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.

 

[Andy]

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.