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

Sasha said:
A small group of ME/CFS patients with an interest in research, including Simon McGrath, Graham McPhee, Carly Maryhew and others, are asking for the help of fellow ME/CFS patients with an important issue that will affect biomedical research in the US and elsewhere for years to come.

The NIH/CDC are looking for feedback on how they propose researchers should measure aspects of ME/CFS patients’ health in all future research – including on how to determine whether a person experiences post-exertional malaise (PEM) and is therefore an ME/CFS patient.

However, there may be serious problems with the proposed method. Your views are needed - hence the poll.

The poll is here. The deadline is Wednesday 24 January.

And please spread the poll on social media. The more responses, the more accurate the poll and the more weight it will carry with the NIH/CDC.

So, do the poll! Spread the poll! This is important! :)
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does broadly mean we kind of take a gestalt? or am i too fogged to be using a computer?

it could partly be severity-related? it seems possible that an almost asymptomatic or very mild sufferer [e.g. able to work and get to doctors but no ability to socialize or cook more than a bowl of noodles] could feel a bit of resonance with de paul, then progress to moderate [e.g. housebound] and then feel resonance with iom [and then wonder if de paul is measuring sleep apnea].

or maybe i'm totally off? just thought i'd throw it through the fog just in case.
 
Broadly is a deliberately-generous term. So if you think it’s not quite right, but generally covers it, that’s broadly and a Yes. If you think not really, or definitely not, then it’s a No.
 
Simon M said:
We made it to 760 responses, which is an incredible results. Thanks to everyone who completed the survey or shared. Paul closes tomorrow, early, at 2 PM GMT.

This is the link if anyone wants to share.
https://www.surveymonkey.com/r/7VXQSL2
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Do we really want the post exposure to things that trigger an exacerbation of ME/CFS symptoms to be called post exertional malaise or does this just reinforce the idea that the disease is trivial and people feel a big off and out of sorts? Post Exertional Neuroimmune Exhaustion PENE as per the ICC didn't really take off. Crash is pretty accurate but NOT too medical sounding. Just wondering once PEM is in the common data elements we have it for ever most liekly?
 
good question. i also wonder at "exertion". it's also exposure. to light noise stress etc. and bad sleep can produce the same effects. do we have evidence that this should be limited to exertion?
 
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