The lack of info on masks has been ridiculous, and probably deadly. A video like this should have been part of the Government's public information on Covid. Instead, misinformation has spread widely. I did a lot of digging into masks online back in the day and all I found were dodgy rabbit...
This video is absolutely fascinating! It's all about how N95s don't work like sieves and the multiple and ingenious physical principles that are part of their design. Great watch! And a fun presentation.
I've been wondering what a good study would look like, because obviously it would be unblinded, so you couldn't trust subjective reports, and the only objective measure would be something like step count - but because pacing is a management tool, not a treatment intervention, success might look...
Thanks, I hadn't been aware - but is that only PwME who get this when they do a bit much or does getting a useful warning apply to other people? Do we have evidence that avoiding tachycardia helps avoid PEM? (I'm completely ignorant about this area and none of it is making intuitive sense to me!)
PwME surely go over their AT all the time as part of normal life, because Workwell suggest that for PwME, the AT threshold can be best estimated at resting heartrate plus 15 bpm, which barely allows scope to climb a few steps, or walk a few dozen yards. If there's no good theory or evidence...
I see a lot of discussion both on S4ME and all over the Internet about how PwME are using heart-rate monitors as a pacing tool. They're trying to avoid going over their aerobic threshold, on the assumption - apparently coming out of Workwell - that crossing your threshold is what leads to PEM...
Thinking about how the responders and non-responders were separated by the responders having higher NK levels, possibly indicating a subset of PwME with a mechanism that daratumumab tackles, is it weird that we haven't seen reliably raised average NK levels in PwME? Or have we?
Interesting idea!
Google Translate got this info for patients from the study description: "We give daratumumab as an injection under the skin of the abdomen three times at two-week intervals, and then twice after 24 and 26 weeks. [...] The total duration of the study from inclusion to the last...
Totally agree that doing this properly is essential, but it's entirely possible that additional resources would allow the trial to be done both properly and faster. No one here, especially not me, is arguing that we should ditch quality for speed. I just want us to be sure that reasonable...
I agree, that's a really interesting idea - I'd like us to be putting those ideas to Haukeland because they're in the best position to know whether they need more money to speed up and how to weigh that against some extra potentially very interesting analyses.
I didn't quite understand this point but that's interesting about the analyses. If we could buy them a statistician, it could speed up the writing of the paper once they've got the results.
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