#longcovid

Boosted by

@tomkindlon@disabled.social · 4d ago

ME Research UK: Orexin is a chemical messenger produced in the brain. Disruptions in the orexin system produce symptoms that overlap with long COVID and ME/CFS. A review discusses whether it is feasible that disruptions relating to orexin could be linked to long COVID. https://tinyurl.com/5b34px25 #mecfs #longcovid @mecfs@fedigroups.social @longcovid@fedigroups.social

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Trending Bot @trending@homestead.social

Tom Kindlon

@tomkindlon@disabled.social · Jun 09, 2026

I like many other people thought this blog post was very good "Why I Can’t Just Meet You for Dinner" https://substack.com/home/post/p-178293036 Screenshot from AMMES May 2026 Newsletter #MEcfs @longcovid@fedigroups.social #LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #PEM #PostExertionalMalaise #PwME #ME #MyalgicE @mecfs@fedigroups.social

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Wolfgang Hagen

@docjosiahboone@wien.rocks · Jun 08, 2026

Laut einer neuen, innovativen Studie ist #LongCovid häufiger, als viele vermuten. In der Studie liegt die Prävalenz bei 16 % der an #Covid19 Erkrankten. Es wird aber oft systematisch übersehen. Das hat Folgen für die Betroffenen und für das Gesundheitssystem. Mehr im Blog #AllCoronavirusesAreBastards https://allcoronavirusesarebastards.digitalpress.blog/long-covid-ist-haufiger-als-man-denkt/

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In reply to

PaulaToThePeople 😷

@PaulaToThePeople@climatejustice.social · May 25, 2026

QUESTIONS 1 My main question is for tips on how to manage orthostatic hypotension. There is a lot of discussion about what to concentrate on during training with hypotension versus hypertension, but the first question is probably: Should I even treat this as a hypotension and concentrate on getting my blood pressure up or should I rather concentrate on better regulation of blood pressure, if that is even possible. For example for burnout I learned that to reduce stress the goal is not to get the heart rate down, but to increase the heart rate variability (HRV). Is there such a thing as training for blood pressure variability/flexibility? 2 Next question is for tips on how to manage burnout and PAIS if and when I get both at the same time. My burnout management involves lots of activities ranging from light intensity long walks to sprints and high intensity interval training and strength training as well as lots of meditation, breathing exercises. I try to go for a walk for at least one hour after every meal, because (at least during a sick-leave) meals cause the most and longest lasting stress if I don't walk it out. That's why I try to eat only once a day at noon - eating in the evening can ruin my sleep. My management during an infection that feels like the start of a PAIS involves lots of sleeping without any circadian rhythm detectable and very little activity. My management of PAIS involves pacing which I'm not good at yet though. It's really hard to know what is too much and what is too little. But I guess I can't be very wrong with just lots of slow walking without too much uphill parts. 3 Now if you have any other general tips on managing any of the mentioned ailments feel free to let me know. I didn't mention everything I know already, but feel free to also mention things you assume I already know. #FollowerPower #PleaseHelp #AskFedi #question #burnout #pais #PostCovid #LongCovid #MECFS #FatigueSyndrome #fatigue #orthostasis #OrthostaticHypotension #OrthostaticDysregulation #pacing #HRV #BloodPressure #BloodPressureManagement #syncopation #BurnoutManagement #PAISManagement

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PaulaToThePeople 😷

@PaulaToThePeople@climatejustice.social · May 25, 2026

I have questions to people who have knowledge about Burnout, PAIS (post-acute infection syndromes, like Post/Long-Covid, ME/CFS, etc…), orthostatic hypotension, blood pressure management, fitness, pacing, etc.

This will be a long post and you don’t have to read all of it. Just look for the paragraph with the headline “questions” in the first reply. I’m mostly writing so much to get my own thoughts in order.

NOTICE

I’m asking this here in the Fediverse because this is the best place to reach actual people who know stuff. Before the ecocide slop boom I’d have started with internet research, but that’s no real option anymore. If an account answers me that seems like AI it will be blocked. If you answer me with what you just found on random internet sites, you will be blocked. Everybody else: Thank you! Btw you don’t have to be a formal expert on any of the subject matters. Anecdotal evidence by people affected or relatives is highly valuable too.

BACKGROUND

I’m prone to both burnout and PAIS (undiagnosed, because the health system is inadequate) but haven’t yet had both of them at the same time. This might be different now. My burnout is definitely back and I’m having an infection that feels a lot like it will turn into a PAIS. I’ve had a PAIS two times both starting in MAy of 2024 and 2025 and lasting for 3 months each. So this would be the right time to get it again. Since the last PAIS I’ve had two infections though that felt like the start of PAIS, but I probably stopped them with lots of medication, supplements and other methods. My last sick-leave was due to my first burnout for 6 weeks (obviously not long enough). I’m on sick-leave again since Wednesday because the burnout is back - the infection broke out one day later, but probably already made my body weaker before, playing a role in the burnout-relapse.

MY SYMPTOMS

For burnout my main symptoms are: tinnitus, tensions in the ear, jaw & neck area, headaches, bad sleep, fatigue, susceptibility to stress, low psychic resilience. For the PAIS its fatigue, bad sleep, brain fog, bad performance in all systems (fitness, cognition, social, etc..), malaise, some symptoms of a cold or allergy (constant tingle in my nose, running nose, sometimes coughing and sneezing, …) and bad memory that lasts longer than everything else (years instead of months).

SPECIAL SYMPTOM: ORTHOSTATIC HYPOTENSION

I’ve had bad orthostatic hypotension as a child with regular syncopations. It has gotten better (rarer) and I’ve learned how to deal with it, at least a bit. I do still have it whenever I have an illness that makes me bedridden, like infections and depressions. There are basically 4 levels: 1 (usually without positional change): I feel that something is wrong with my orthostasis. 2 (usually with some positional change, like from lying to sitting): I feel dizzy and weak, like my brain is not supplied with blood as it should be, but no signs of unconsciousness. 3 (usually when changing from lying to standing): I feel my conciseness fading, I get tunnel vision, my legs let up and I have to hold tight to make sure I don’t fall. I get the feeling of a slight dissociation, but I’m still there enough to control it and it slowly fades away giving me a warm comfortable feeling when the blood flows back to everywhere where it’s needed.

(sometimes combined with 3 and me not controlling it well, sometimes immediately after standing up too quick after lying for a while): I loose consciousness and fall down, sometimes banging my head badly. I haven’t had this level since my teenage years and my consciousness always came back immediately when I’m on the ground. Now I’ve learned that orthostatic hypotension is both a symptom and a risk factor for PAIS and since I’ve had it forever I think it might be a good idea to learn to manage it better as to not get PAIS again or at least less frequent.

#FollowerPower #PleaseHelp #AskFedi #question #burnout #pais #PostCovid #LongCovid #MECFS #FatigueSyndrome #fatigue #orthostasis #OrthostaticHypotension #OrthostaticDysregulation #pacing #HRV #BloodPressure #BloodPressureManagement #syncopation #BurnoutManagement #PAISManagement

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laen 🌿

@moonrabbit@sunny.garden · May 14, 2026

🔥 psa for anyone taking quercetin on a regular basis 🔥 this may be common knowledge and just previously unknown to me, but i've just today discovered that quercetin chelates iron/blocks iron absorption and can lead to anaemia and/or low ferritin levels. so if you're taking it regularly, please have things checked! (and if ferritin is low enough, just stopping quercetin won't be enough to bring it up and possibly neither will otc iron supplements, so please do get some numbers / help if necessary) i've just been in tears from finding this out as quercetin is one of the few things that helps me at all, and given i have no medical care, one of the few things i can access. i've been taking a decent dose daily for the past ... 13 years? but my ferritin was on the floor at my last blood test a year ago (ofc i couldn't find anyone to do anything about that). and i can't even take oral iron, not that it would help if i could, given my levels, but. yes. yay

take care people and good luck

#MCAS #POTS #hEDS #LongCovid #allergies

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JSkier

@JSkier@social.linux.pizza · May 06, 2026

Surgery is finally scheduled for this Thursday to repair a PLF. Finally. 18 months of this hell, and there is the first of a few surgeries to come. I am not sure if I'll be able to ever run beyond an elliptical again (I have a congenital bone problem), but perhaps the balance issues can be addressed once more in round two of vestibular rehab after my #thirdwindowpathology is patched and fixed to the best of modern medicine's abilities. Finally got into the LongCovid program at the Mayo (long story, the first time was a false start). #LongCovid is a hell I wish upon no one. We're all gonna die. Someday. https://music.youtube.com/watch?v=2K8I1aC32KM&si=Ifc4YUnIjhhjldb5

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Octavia Con Amore

Succubard's Library

@OctaviaConAmore@cutie.city · Jun 02, 2025

help, how do I properly take care of a brain frog?

#LongCovid #MECFS

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Over There

@oftencalledcathy@mastodon.ie · May 05, 2026

Here’s a rare thing; the Irish times reporting sensibly on #LongCovid and how it affects the heart “There is also growing evidence that Long Covid can disrupt the autonomic nervous system” - I have this issue and it’s not fun And it’s not ancient history, new people are being diagnosed every day https://www.irishtimes.com/health/your-wellness/2026/05/05/evidence-mounts-that-long-covid-is-damaging-the-hearts-of-those-affected/?utm_source=dlvr.it&utm_medium=bluesky

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David Davies-Payne

@ddp@fediscience.org · May 04, 2026

Request for #LongCovid subjects for a research study 🙋🏻‍♀️💪🏼💉🩸

Women aged 18+
In #Melbourne #Victoria Australia
1️⃣ blood sample & questionnaire

Looking for a signature in platelet microRNAs

La Trobe University team headed by: Dr Sarah Annesley Dr Daniel Missailidis Prof Stephanie Gras

Entry survey https://redcap.latrobe.edu.au/redcap/surveys/?s=XHX3CREK8Y49NTDM

Or if the initial questionnaire is not accessible, please drop an email Dr Daniel Missailidis at:

D.Missailidis@latrobe.edu.au

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Tom Kindlon

@tomkindlon@disabled.social · May 01, 2026

This was posted today by Daniel Missailidis, PhD, a sympathetic researcher. https://redcap.latrobe.edu.au/redcap/surveys/?s=XHX3CREK8Y49NTDM

He has added in other posts:

it just requires one blood draw and a short survey
We need ~25 more women with LC and ~5 more women with ME/CFS
Healthy women also needed.

#MEcfs #LongCovid @mecfs@fedigroups.social @longcovid@fedigroups.social #auscovid19

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Christina Koch

@juchti@mastodon.social · Apr 30, 2026

Auch in Österreich ist die Lage der #MEcfs und #LongCovid Erkrankten besch*ssen. Starke Recherche zu Gutachter*innenschulungen in Österreich! ⬇️ "Im Vorjahr hat unsere Recherche gezeigt: PVA-Gutachter erkennen die Diagnosen ME/CFS und Post-Covid sehr oft nicht an. Jetzt liegen ORF, DOSSIER und APA geheime Schulungs-Unterlagen für Gutachter vor, die Hinweise liefern, dass das so gewollt sein könnte." Constanze Ertl https://orf.at/stories/3428120/

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Anti. 🐘

@antiaall3s@chaos.social · Apr 25, 2026

"I often bring N95s with me to medical appointments, especially if I will be in a room with a specialist for a long time. This is not ideal for multiple reasons. It can get quite costly and I have to call reception ahead of time to check if the physician will be amenable to the request — which comes with the risk of discrimination or a blanket diagnosis of anxiety" We are meant to beg mds to wear masks and even front the cost. WTF is wrong with this system? https://thesicktimes.org/2026/04/24/we-need-masks-in-healthcare-now/ #LongCOVID

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Boosted by

Kevin Karhan @kkarhan@jorts.horse

In reply to

Christos Argyropoulos MD PhD

@ChristosArgyrop@mastodon.social · Apr 24, 2026

@kkarhan@jorts.horse I want to fine tune / train BERT on biological literature data (don't have much use for text generation). The original BioBERT model required 8 V100 and took about 20 days of training. One or two A100s would massively speed this up and could meaningfully accelerate a research project on the biology of #longcovid.

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A-Dub 🥝

@adub@beige.party · Apr 05, 2026

just got my 12th Covid vaccine 💉🚫🦠. i get a booster every six months. because their effectiveness wanes over time. #LongCovid

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hbrpgm

@hbrpgm@adalta.social · Mar 18, 2026

📺 https://peer.adalta.social/w/wPdxCBb5HxKApFCfvRMes3 🔗 🇩🇪🇺🇸🇫🇷 🔗 ℹ️

Une dysrégulation persistante de l’axe intestin-immunité constitue un mécanisme pathogénique central dans le syndrome post-COVID de longue durée.

#longcovid #postcovid #pasc #pwlc #postcovid19

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JSkier

@JSkier@social.linux.pizza · Mar 15, 2026

A heads-up I wrote for all us #longcovid peeps. https://longcovid.blog/p/warning-about-cyp3a-inhibition-paxlovid-and-corticosteroids/

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Ronja

@RonjaBiernat__dup_71568@chaos.social · Mar 15, 2026

Today is Long COVID Awareness Day and I wanted to write something positive — something like: we’re not weak, we’re fighters. But honestly, today I don’t have the energy. Sometimes the fight feels almost impossible, and the grief doesn’t go away. To everyone living with Long COVID or another PAIS: wishing you strength. And to all caregivers: a sincere thank you. @longcovid@fedigroups.social #LongCovid #PAIS #niethersteld #LevendVerdriet #CovidIsNotOver #LongCovidAwarenessDay

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Ron Chusid

@rchusid@med-mastodon.com · Mar 07, 2026

Study finds Long Covid in 42.8% of Covid patients among active duty military personnel with pulmonary complications most common in males. #COVID #LongCovid https://www.amjmedsci.org/article/S0002-9629(26)00103-5/fulltext

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JSkier

@JSkier@social.linux.pizza · Feb 26, 2026

It's easy for me to say, Not today. I have a deck of health crap that keeps getting worse. The world is in a fragile state. But today, I ran. Health stuff doesn't matter. Political bullshit doesn't matter. I'm free when I run. Fuck Trump. Fuck ICE. Fuck the GOP. Fuck LanguageTool for saying I'm starting too many sentences with fuck. And finally, fuck #longcovid. #running #runnersofmastodon

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