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

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

 

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.

 

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?

 

Done (the poll) .
Hopefully not too late (high noon local time).

 

Bump! The poll closes at 2pm today.

Now or never, guys!

 

Sorry, Sasha. I was a bit slow on the uptake on this one as I haven't been on the forum for a while.

 

Not to worry - someone posted it anyway.