Do the poll! Are the NIH/CDC going to use the right definition of PEM in all their future research? Deadline 24 January

I really do wish that the term "Post-exertional Malaise" had not become the accepted language.

Just like "CFS", it's not emotive enough and IMO, doesn't properly reflect what patients experience.

Much better to use the term "Post-exertional Flare" (PEF) or "Post-extertional Symptom Flare" (PESF)

Perhaps there is a need for both terms (PEM and PESF) to be used - with the DePaul questionnaire being used to define the fatigue-focussed PEM and the IoM definition being used to diagnose the more immunologically severe PESF
 
Done.

And I wish a description of PEM could better reflect that the patient often is already having symptoms, and that PEM is an additional flare-up/package of symptoms on top of that.
I worry some might misunderstand and think most patients are otherwise feeling rather ok.
 
Perhaps there is a need for both terms (PEM and PESF) to be used - with the DePaul questionnaire being used to define the fatigue-focussed PEM and the IoM definition being used to diagnose the more immunologically severe PESF
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@Paul Watton, do you mean separated into two patient groups, one with fatigue focused PEM and one with severe PESF, or that both types of PEM can occur in a patient? Many thanks.
 
anniekim said:
@Paul Watton, do you mean separated into two patient groups, one with fatigue focused PEM and one with severe PESF, or that both types of PEM can occur in a patient? Many thanks.
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They describe two symptom complexes, the one being more straightforward than the other.
Logically, a patient could be diagnosed with both if they conform to both sets of criteria, but I suspect that PESF only occurs in more severe / advanced cases of the illness.

So, what I'm saying is that PESF is an immunologically more complex evolution of PEM and is only found in the more severe and longer duration patients.
 
There was also discussed at one point (in ICC maybe?) Post Exertional Neurological Exacerbation which covers it pretty well.
 
Done

I may have missed what this survey is doing.

Paul Watton said:
I really do wish that the term "Post-exertional Malaise" had not become the accepted language.

Just like "CFS", it's not emotive enough and IMO, doesn't properly reflect what patients experience.
Click to expand...
I don't know what to best call it, post exertion exhaustion, post exertion fried like a chicken?

Kalliope said:
Done.

And I wish a description of PEM could better reflect that the patient often is already having symptoms, and that PEM is an additional flare-up/package of symptoms on top of that.
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That is a very good point, i have sometimes had trouble explaining this. Hope you added this to the comments.
 
My Comments:
There is so much variation in the way people are afflicted by ME/CFS. So it is difficult to create a definition that fits everyone. Too few criteria will exclude people from a diagnosis. Having too many criteria will make the definition too broad, increasing the possibility of misdiagnosis.
 
Frogger said:
My Comments:
There is so much variation in the way people are afflicted by ME/CFS. So it is difficult to create a definition that fits everyone. Too few criteria will exclude people from a diagnosis. Having too many criteria will make the definition too broad, increasing the possibility of misdiagnosis.
Click to expand...
It is difficult, but having data on how patients view different proposed descriptions will help find the most appropriate solution.
 
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