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.
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#pem
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Hey! Are you in the USA? Do you (or someone you know) have any of:
- hypersomnia
- complex sleep disturbances
- postural orthostatic tachycardia syndrome, or POTS
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
UVA Today · UVA Health Takes Aim at Long COVID in Two National Clinical TrialsAn estimated 50 million Americans may be living with symptoms of varying severity.
'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.’"
www.medischcontact.nl‘Steeds meer huisartsen schrijven offlabel naltrexon bij postcovidpatienten voor’Huisartsen schrijven postcovidpatiënten met postexertionele malaise (PEM) steeds vaker, off-label, een lage dosering naltrexon voor. Dat vertelden Jojanneke Kant en longarts Merel Hellemons (ErasmusMC, onder meer werkzaam bij postcovidkliniek) op het recent gehouden ‘long covid symposium’.
Replied to Tom Kindlon
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
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.
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!"
Continued thread
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
#MEAction NetworkStop. Rest. Pace.If you are new to Long COVID or ME/CFS, it is important to learn how to #StopRestPace.
Continued thread
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
@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.
NatureReply to: Should we be careful with exercise in post-exertional malaise after Long COVID? - Nature Communications
Replied to Tom Kindlon
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.
Continued thread
2/
"The objective of this article is to describe the challenges and opportunities of the PEM questions of the DePaul Symptom Questionnaires (DSQ)"
I have to celebrate a small win for my sensory sensitive disabled self.
It’s taken me four years but I believe I have finally won the battle with Concord Hospital over the abusive level of the hold music the call center uses.
It would give me #PEM every time I had to call my doctor. And if I send a message through the portal it takes three days for them to get back to me so that’s not always practical.
They didn’t care when I complained that it hurt because of #MECFS, they didn’t care when I asked them how #autistic people who have more sensory issues than I do even call their doctor, they didn’t care when I told them that everyone on their staff in the clinical locations hates the call center as much as I do, but they did care when I accused them of trying to trigger #migraines so that they can admit me and bill #Medicare $25,000.
But you know what actually did it? I found out there was a civil rights division at Concord Hospital and I complained to them instead of patient relations. When I started talking about the rehabilitation act of 1974 (or 1973 idk) patient relations didn’t care, but the civil rights department did.
And I’m still dying to know who owns that call center because it’s the same call center used by NH #DHHS if you have to call the welfare office. So I suspect it’s someone related to Chris Sununu and they’re locked into some awful contract. The food stamp workers hate the call center too. I’ve been talking to people about this for four years.
I finally won. It’s been a good week for me here in New Hampshire.
From the Solve ME/CFS Initiative
Check out our summary of new research finding new animal models to study ME/CFS–related muscle fatigue and #PEM. @AvikRoy74969264 @ggottschalkPhD
@RedefiningMECFS
Continued thread
Auf Viruspersistenz + EBV-Reaktivierung als aktive Pathomechanismen beim chronifizierten Post-Covid-Syndrom gab es KEINE Hinweise. Doch organische Befunde ließen sich objektivieren. Kern: #LongCovid ist ursächlich nicht psychosomatisch.
Der EPILOC-Studienleiter meint: Dass Haus- und Fachärzte keine aussagekräftigen Befunde erhalten, liegt auch an falschen Untersuchungsmethoden. Dadurch sei #PEM zu wenig in der Diagnostik berücksichtigt. #MESCF
EPILOC zeigte: Bei 2/3 der Patienten mit Post-Covid-Syndrom gab es im Verlauf von 2 Jahren keine signifikante Verbesserung. Je länger Beschwerden dauern, umso geringer die Chance auf Spontanheilung. 
From The Sick Times:
“Really pissed off”: Cochrane receives backlash from advocates and experts after abandoning ME/CFS review
“I think patients are disappointed but not surprised, because they’re pretty used to being given the run-around by the authorities"
