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I think the exertion strain for outcomes is definitely an interesting way to look at this. Maybe it could be a useful measure. I don’t understand how that would work. For example my anecdotal experience: My RHR is about 40-45 when I’m not in PEM and 50-55 when I’m in PEM. My heart rate might...

Functional Status as a moderator and mediator of Scores on the PHQ-9 in Long COVID : False Positives and the Inadequacy of PHQ-9 for the Chronically Ill. Change a few words in how the results are interpreted and you’ve got yourself a valuable contribution to the field.

I think it’s long term longitudinal. Like they mention measurments at “10 years”. But still 6 years is a massive amount of time to wait before publishing if they think they’re publishing something that will advance the field.

This sort of endless form filling is exactly the cognitive busywork that can make clinics inaccessible for pwME. It’s basically homework for someone who’se already struggling to have the energy to survive.

Up to? So it magically gets better after 3 years? Or was that just the cutoff date for the data?

For what it’s worth. I’ve never seen a video about an ME/CFS case that’s worse than I was at my worst. And a large majority of videos on pwME are on people much healthier than me. I haven’t been able to speak in 2 years, hear a human voice, I have been wearing extremely heavy duty earmuffs and...

some extracts for those that don’t wanna click on the link BTW I heavily recommend installing an addblocker, very much a large QOL improvement on the internet.

Well that’s ironic

Families of pwME -25 yo in Brittany/Bretagne are asked to participate in interviews for a sort of mini “census” of the scene for young pwME in the region.

isn’t that bound to happen whether it works or not. with a fluctuating condition with significant natural recovery rates.

Mini update: Hard to tell if the filter works well, I guess I’ll see next time a virus spreads through the house. But the sleep mode is basically silent which is amazing.

Yeah like I’d honestly take losing all 4 of my limbs if it made me healthy again. As a very severe person I’m willing to go through very very major tradeoffs if something really works.

I think its to write to the TV channel who invited him. I’ve sent the email, I doubt it’ll do anything in the immediate but a few hundred emails might make them think twice about inviting him again.

How did they correct for the confounders of poor health/recent infection etc

New blog post from #MEA on how they plan to run the Minnesota Pilot Program (Does the pilot have a thread, couldn’t find one…) https://www.meaction.net/post/inside-our-playbook-6-strategic-choices-behind-our-minnesota-pilot

It’s notable that as for the overall incidence new cases were in large part making up for the recoveries.

How are outpatient clinics in Germany? Could this lead to some BACME type stuff?

This is so bad. And I know it will be a somewhat prominent websites patients will get sent to. I myself got sent to the FND equivalent neurosymptoms.org

It sounds constant. Like “I can never do X” What I like about energy is it conveys more the “I can sometimes do X but it depends what else I’ve done that day and…”

In my experience they tend to overstate the evidence a little. But I don’t have energy to dig up references. Of course they also do great work. But I wouldn’t uncritically assume their research summaries as true.