#postcovid

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Tom Kindlon @tomkindlon@disabled.social · 6d ago
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From the Netherlands Wearable Heart Rate Variability Monitoring, Autonomic Dysfunction and Post-exertional Malaise in Long COVID: An Observational Study https://link.springer.com/article/10.1007/s40279-026-02487-4 Screenshot from latest Science for ME weekly update @longcovid@fedigroups.social #LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #HRV #MEcfs #PwME #CFS #ME #MyalgicE @mecfs@fedigroups.social
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Ichinin :verified: :verified_paw: ✅🎯🙄 @Ichinin@infosec.exchange · Aug 06, 2026
Every morning now: After pouring a gallon of eye drops and rubbing my eyes for 15 minutes. #postcovid
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Tom Kindlon @tomkindlon@disabled.social · Jul 30, 2026
From Germany 🇩🇪 Cerebral gray matter volumes in long-term post-COVID patients are associated with peripheral kynurenine pathway metabolites and the severity of depressive symptoms https://www.sciencedirect.com/science/article/abs/pii/S0889159126006665 Screenshot from Science for ME weekly update #LongCovid #COVIDBrain #NeuroPASC #postcovid #PASC #PwLC #postcovid19 #PostCovidSyndrome @longcovid@fedigroups.social
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Gilgwath @gilgwath@social.tchncs.de · Jul 27, 2026
Hello Fedi! My employer went through my #PostCovid time with me. Now that I'm back to work full time, they suddenly decided to let me go. 🤷‍♀️ I'm a #pentester with 5 years of experience in the field, before that 3 years of software dev in the #infosec field as well. Got a Bsc. in Computer Sience with emphasis on infosec and networke systems. In my #homelab I'm selfhosting on #proxmox and #k8s. I've been daily driving #linux for the past 20 years, first #gentoo, then #fedora. I'm pretty good with it, but no certs. I'm looking to continue in #offensivesecurity, but would be happy to pivot into infra/network or any other adventure given it's interessting or a good cause. Happy to invest in my skillset. Hybrid in north-eastern #Switzerland fully remote anywhere else. #getfedihired #fedihired
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Omega_Scribet @Omega_Scribet@mementomori.social · Jul 18, 2026
Boosted by Gerrit 🇪🇺🌍🍉🔻 @gvenema@fairmove.net
'‘Geweldig nieuws’ voor postcovidpatiënten: expertisecentra blijven toch jaar langer open' "Sluiting van de centra dreigde, maar het kabinet heeft toch nog geld gevonden om ze in ieder geval een jaar langer open te houden." "Hoewel Hermans schrijft dat het ‘voortbestaan van de centra’ voor 2027 ‘geborgd’ is, is er volgens een woordvoerder van de minister geen garantie dat alle zes centra volgend jaar open zullen blijven." https://www.volkskrant.nl/politiek/geweldig-nieuws-voor-postcovidpatienten-expertisecentra-blijven-toch-jaar-langer-open~b463ec0b/ https://archive.ph/0M7Aa @longcovid@fedigroups.social #zorg #LongCOVID #PostCovid #expertisecentra
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Tom Kindlon @tomkindlon@disabled.social · Jul 14, 2026
From Italy 🇮🇹 Vagal cholinergic denervation of the gastric mucosa in Long-COVID-19: in vivo evidence of structural autonomic dysfunction https://www.ijidonline.com/article/S1201-9712(26)00608-9/abstract Screenshot from latest Science for ME weekly update Hashtags: @longcovid@fedigroups.social #LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers
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Tom Kindlon @tomkindlon@disabled.social · Jul 05, 2026
Boosted by Trending Bot @trending@homestead.social
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joene 🏴 @joenepraat@todon.nl · Jul 03, 2026
🆘 Een vriendin van mij heeft hoogstwaarschijnlijk ook post/long-covid met POTS en PEM. Ze wordt van het kastje naar de muur gestuurd en als er al hulp is (zoals een kliniek), dan kan ze dat bij lange na niet betalen (want armoede). Van al dat geregel is ze elke keer dagen van slag. De hittegolf van laatst voelde voor haar alsof ze aan het doodgaan was. Ze kan het huis ook niet koel krijgen, wat ze ook doet (incl. airco). Mogelijk nieuwe hittegolf kan echt fataal worden. Ze vraagt nu vooral iemand die met haar kan nadenken over wat te doen. Ik zelf heb er geen verstand van en kan alleen praktische dingen doen. Dus als mensen ideeën hebben, laat het me weten. Ja dit is een hulpvraag. 😢 🙏🏻 Volkskrant: *Nergens plek voor ernstig zieke postcovidpatiënten: ‘Ik voel me een onbestelbaar postpakketje’* "Linda Nugteren (39) en Nicole van Keulen (45) hebben allebei al ruim vijf jaar ernstige postcovid. Ze hebben 24 uur per dag zorg nodig, maar er is nergens plek omdat hun ziekte formeel niet blijvend is." https://www.volkskrant.nl/kijkverder/v/2026/postcovid-longcovid-patienten-revalidatie-ziekenhuis~v3102909 (🆓 https://archive.is/hIzqm) #PostCovid #LongCovid #Covid #POTS #PEM #MutualAid #Hulpvraag
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PaulaToThePeople 😷 @PaulaToThePeople@climatejustice.social · Jun 27, 2026
Sometimes hope really is a pain. The last two years I had a PAIS (post-accute infection syndrome like Post COVID or ME/CFS) all summer long. The rest of the year (usually my least favorite 7-9 months) I only had other health issues. Instead of using those 7-9 months of having some energy to get a proper diagnosis and treatment, I spent all my money on supplements and hoped it wouldn't come back again. Now this summer I have my PAIS plus burnout and I have to try to finally get a diagnosis at hellish temperatures. While there still is no place to go to get a PAIS diagnosed, because nobody learns about them while studying medicine. Wish me a miracle. #PAIS #PostCOVID #MECFS #burnout
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Tom Kindlon @tomkindlon@disabled.social · Jun 19, 2026
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Tom Kindlon @tomkindlon@disabled.social · Jun 09, 2026
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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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PaulaToThePeople 😷 @PaulaToThePeople@climatejustice.social · Jun 09, 2026
post covid + burnout = bad combination. 0/5 stars. would not recommend. #PostCovid #PAIS #burnout #pacing
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PaulaToThePeople 😷 @PaulaToThePeople@climatejustice.social · Jun 07, 2026
Energy transition, but for my body. My energy doesn't seem to be renewable. #burnout #PostCovid #exhaustion #fatigue #sleepless #NotJustTired
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PaulaToThePeople 😷 @PaulaToThePeople@climatejustice.social · May 25, 2026
Replying to @PaulaToThePeople@climatejustice.social
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. 4. (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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Omega_Scribet @Omega_Scribet__dup_34300@mementomori.social · Feb 25, 2026
'Inspectie onderzoekt postcovidbehandeling door pijnkliniek' "De Inspectie Gezondheidszorg en Jeugd (IGJ) onderzoekt of een kliniek in Velsen-Noord de regels voor medisch-wetenschappelijk onderzoek heeft overtreden door mensen met postcovidklachten te behandelen met het middel lidocaïne. Een woordvoerster van de inspectie bevestigt dat na berichtgeving door Follow the Money.[*] "Omdat er geen controlegroep is, kan niet vastgesteld worden wat het normale beloop van klachten zou zijn geweest zonder behandeling, of als deelnemers een placebo hadden gehad" "Het onderzoek kent fundamentele methodologische tekortkomingen”, concludeerden reviewers van het vakblad. Volgens hen waren deelnemers met betere uitkomsten oververtegenwoordigd in de onderzoeksresultaten. Ze waarschuwden voor “valse hoop”." "Dat de IGJ onderzoek doet, betekent “dat er vragen zijn gerezen en wij verlenen alle medewerking aan de beantwoording van die vragen”, laat de kliniek weten." https://www.skipr.nl/nieuws/inspectie-onderzoekt-postcovidbehandeling-door-pijnkliniek/ *Artikel Follow the Money: https://www.ftm.nl/artikelen/postcovid-patienten-proefkonijnen-in-experiment-lidocaine #zorg #Inspectie #IGJ #PostCovid #LongCovid #lidocaine #ExcellentCareClinics
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Omega_Scribet @Omega_Scribet__dup_34300@mementomori.social · Jan 29, 2026
'15 duizend covidpatiënten arbeidsongeschikt' "Bijna zes jaar na aanvang van de coronapandemie zijn ruim 15.000 postcovid-patiënten zo ernstig ziek dat ze geheel of gedeeltelijk arbeidsongeschikt zijn verklaard. Dat blijkt uit cijfers die UWV aan de Volkskrant heeft verstrekt. De zorg voor deze groep patiënten schiet ernstig tekort en daarom trekt de provincie Noord-Brabant nu zelf geld uit voor een behandelcentrum. De ontoereikende zorg is een van de onderwerpen die vanavond aan bod komen in het langverwachte Kamerdebat over postcovid." "C-support, de organisatie die postcovidpatiënten ondersteunt, krijgt daar volgend jaar geen geld meer voor van het ministerie." @longcovid@fedigroups.social https://www.skipr.nl/nieuws/cpb-15-duizend-covid-patienten-arbeidsongeschikt/ #gezondheid #zorg #UWV #LongCovid #PostCovid #arbeidsongeschiktheid
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