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#pem
Hey! Are you in the USA, near-ish to Virginia? Do you (or someone you know) have any of:
- hypersomnia
- complex sleep disturbances
- postural orthostatic tachycardia syndrome, or POTS?
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.”
'Steeds meer huisartsen schrijven off-label naltrexon bij postcovidpatienten voor’
"lage dosis naltrexon van maximaal 5 mg per dag, een middel dat off-label al langer gebruikt bij onder meer ME/chronisch vermoeidheidsyndroom (cvs). Achterliggende hypothese is dat deze lage dosering leidt tot pijnvermindering en een anti-inflammatoir effect. "
"Naltrexon in hoge dosering (25mg) is geregistreerd voor alcohol- en opioidenverslaving, doordat het de werking van morfine blokkeert."
"het opbouwschema van naltrexon op haar Instagram account gezet"
"Daarnaast zijn er nog andere (niet-)medicamenteuze stappen die je als huisarts kunt zetten, zoals nagaan of de pacing goed wordt uitgevoerd. En bij posturaal orthostatisch tachycardiesyndroom (POTS) drie liter water per dag en zout adviseren, en eventueel een steunpanty.’"
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Outdated and misleading content; review unsuitable for clinical decisions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
#NowPlaying Bot 
Awe
Sammlung mit Forschungsarbeiten der meist heruntergeladenen Paper aus 2024 auf @nature zum Thema "Health Science".
Auf Platz 1 Dr. Rob Wüsts Veröffentlichung "Muscle abnormalities worsen after post-exertional malaise in long COVID" ("Muskelanomalien verschlimmern sich nach Post-Exertional Malaise bei Long COVID").
#MECFS #LongCovid #PEM #MECFSFachtagung
1/2
Dr. Rob Wüst war Referent auf der ME/CFS-Fachtagung des Fatigatio e.V. in 2024.
Ein deutschsprachiges Skript seines Vortrags "Veränderungen der Skelettmuskulatur bei Long-COVID und ME/CFS" kann hier eingesehen werden: https://www.fatigatio.de/fileadmin/Projects/07_fatigatio/user_upload/Fachtagung_2024/Uebersetzung_Wuest_final.pdf
Auf unserem YouTube-Kanal steht sein gesamter Beitrag im Original mit Untertiteln zur Verfügung (ca. 25 min.): https://youtu.be/UikSrMFn2DM?si=U-60gr45VmVWbo42
#MECFS #LongCovid #PEM #MECFSFachtagung #ME #Fatigatio
2/2
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.
Wenn ich schlechtere Tage habe, dann es einen Tag etwas besser ist, dann ist mein emotionalen Erwartung immer noch von grippalen Infekten geprägt:
Ich erwarte, dass der nächste dann Tag noch besser wird (und ein paar Tage später dann alles wieder super).
Mit #PostCovid hingegen das aber anders.
Die Baseline ist nämlich woanders und schon rein statistisch durch Regression-to-the-Mean ist es sehr wahrscheinlich am nächsten Tag wieder schlechter.
1/
My cat is great for fighting PEM. He gets angry anytime I try to wipe things down in the house and proceeds to attack or maybe he's trying to help?
Video from SciShow:
"Exercise Actually Makes Chronic Fatigue Syndrome Worse"
https://www.youtube.com/watch?v=wxSwYUennBA
"ME/CFS, or myalgic encephalomyelitis/chronic fatigue syndrome, is way more than being tired at the end of the day. And, contrary to situations like that, exercise is the last thing you'd want to do."
"If you haven’t heard of the condition, maybe that’s because some researchers estimate that around 90% of people with it are undiagnosed!"
I do hope that this research on subtypes somehow leads to better diagnosis and treatment! (It's all a bit beyond me)
But it seems like this data also emphasies that regardless of subtype most Long Covid patients need to pace themselves and avoid exertion as much as possible. Difficult to do, but necessary for most patients so they can avoid getting even worse.
Some resources here:
https://www.meaction.net/stoprestpace/
3/n
The subtypes seem rather confusing to me.
At first I thought they'd put all the patients with PEM (post-exertional malaise) into one subtype.
But when I looked at the chart showing symptoms (see attached image) there were high levels of PEM (94, 99, 99 or 92 percent of patients) in 4 of the 5 subtypes.
And 53 percent of patients in subtype 1 had PEM.
Link to paper:
2/n
[Перевод] SSL и SSL-сертификаты для новичков
Представляю вашему вниманию перевод статьи SSL and SSL Certificates Explained For Beginners . Я долго разбирался с SSL, сертификатами, центрами сертификации - это единственная статья, после которой у меня что-то отложилось в голове :) Поэтому возникла идея перевести ее и донести до широких масс.
Volle dag vandaag... Half uurtje strijken, uurtje kleine snoei, drie kwartier aan de foon met collega en dan zo een kleine kookactie. #PEM stresstestje met de nieuwe dosis LDN. Energiebudget van 2 uur naar 3 uur?
@Med58ll op X schreef:
Nederlands onderzoek waarschuwt dat lichaamsbeweging post-exertionele malaise (#PEM) bij #LongCovid kan verergeren.
PEM is niet alleen een manier om je conditie te verminderen, en intensieve activiteit is geen remedie.
Know someone who has "crash days" in the days after exertion?
@tomkindlon foregrounds a tough lesson for some Long COVID sufferers:
The minutes and hours immediately following heavy exertion might pass almost normally.
The next day might be when the crash starts.
It makes it harder to link cause and effect. Delayed onset muscle soreness (DOMS) follows a similar pattern, not occurring until a day or two later, and no athlete denies DOMS because the muscles that are sore are the ones that were exercised.
The systemic exhaustion after exertion is harder to intuitively associate, the longer the gap between exercise and malaise.
