Immer, wenn ich es leid bin, Maske zu tragen und draußen zu bleiben und Leuten auf die Nerven zu gehen*, lese ich ein bisschen die Hashtags #PEM #LongCovid und #MECFS, und dann geht's eigentlich wieder.
#Maskodon 
*nicht ganz konsequent, es ist immer eine Abwägung
Haven't crashed much at all from socializing yesterday, granted I did rest hard right after.
Still resting today. Feels restorative which is a nice change.
Hey! Are you in the USA? Do you (or someone you know) have any of:
which started or worsened after a bout of acute COVID-19?
Trials are open for treatments for these symptoms!
Those interested in participating in the trials can contact the clinic for screening to see if they are eligible. The team can be reached via email at covidtrialsuva@uvahealth.org, or by phone at 434-243-4008 or toll-free at 855-882-5334.
and they seem like good folks:
“We see patients coming in who are frustrated because they look fairly normal, but they cannot fully function and are not being believed,” she said. “So, for those people, I want to say this is truly a disease and you are not imagining anything.”
While UVA is in Virginia the article suggests it is a USA-wide national study.
https://news.virginia.edu/content/uva-health-takes-aim-long-covid-two-national-clinical-trials
If your doctor, or the doctor of someone you know, is still suggesting exercise therapy for CFS or fatigue in general, that recommendation has now officially had peer review label it
Outdated and misleading content; review unsuitable for clinical decisions
the full review: https://hbprojecttalk.wordpress.com/2025/03/13/iag-submission/
main author https://mastodon.online/@hildabast h/t @tomkindlon
From the Netherlands:
Wearable heart rate variability monitoring identifies autonomic dysfunction and thresholds for post-exertional malaise in Long COVID
https://www.medrxiv.org/content/10.1101/2025.03.18.25320115v1?ct=
From the latest Science for ME weekly update
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
#PEM @mecfs
#MEcfs
I don't follow sports, but this seems like he is describing Post Exertional Malaise #PEM 
SOMEONE PLEASE TELL HIM ABOUT MECFS AND PEM.
Maybe he should contact the Putrino Lab and David Putrino...
https://www.espn.com/nba/story/_/id/44270352/kristaps-porzingis-excels-return-frustrating-illness
PEM is a real bummer.
Early last night, I felt the vibe to dance for an hour while sitting on my office chair to a new favorite DJ set. At the time, it felt great to get a bit of exercise. But now, I hurt everywhere and my mental ability is almost nonexistent. Needless to say, I’m confined to bed right now.
I just hope I haven’t reduced my baseline yet again. I was being so careful for months now.
Iets ruimte gekregen in vergelijking met het laatste kwartaal 2024. Iets meer stappen op een dag en wat vaker weer rondje hondje. En vandaag met die zon is dat wel heel lekker (zonder bankjes-break EN mn hartslag onder 95 weten te houden).
Gister begonnen met LDN. Benieuwd wat dat gaat doen.
My #LongCovid life with #POTS and #PEM
Power comfort lunch, bank, yoga nidra, kleuren/puzzelen en straks naar bed. #PEM control mode ON
My #LongCovid life
En voor mij belangrijk onderdeel dat ik een bijdrage lever aan het onderzoek (al mijn data mogen ze bestuderen en met bv pcnn delen). Hoop heel erg dat er voor mij individueel en voor ons allemaal een stapje richting beter leven gezet kan worden 
Nu #EffeLiggen en de reactie gaan verwerken die ongetwijfeld de komende dagen zal komen #PEM
Me: *does too much physical stuff for three days in a row*
Me: *now can't do anything and is deep in PEM*
The teenage John Connor who lives in my head, sarcastically: Are we learning yet?
Me: No, John, after 12 years I think it's safe to say that we still haven't learnt anything about this disease and we probably never will.
Best explanation of #PEM and its impacts by @PutrinoLab
What is Post Exertional Malaise?
Fantastic rundown of current theories on causes of and possible treatments for ME/CFS, past and present avenues of research, findings new and old, trials and clinical outcomes of various drug regimens to prevent and/or treat not only for improving symptoms but towards a cure. Gets into some medical specifics requiring more knowledge than I have, but is fascinating and fills me with hope.
https://cen.acs.org/biological-chemistry/infectious-disease/Long-COVID-hunt-causes-cures/101/i30
#NowPlaying Bot 
Awe
