take care people and good luck 
#MCAS #POTS #hEDS #LongCovid #allergies
@moonrabbit@sunny.garden
·
3d ago
laen 🌿
@moonrabbit@sunny.garden
ceramicist making shinto + shamanic raku sculpture to help save the world. i love nature and cats and get v upset about the state of everything. from wales/ie, in france for now. autism + agender + not very human + hEDS, autoimmune inflammatory arthritis, lupus/sjögrens, MVP, dysautonomia, POTS, MCAS, etc. 😷 sculptures: https://www.driftingspirits.art provide tea: https://ko-fi.com/moon_bun take care out there hoomans 
free 🇵🇸 🔥🌍💔 ffs people just be decent
sunny.garden
🔥 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
take care people and good luck
#MCAS #POTS #hEDS #LongCovid #allergies
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@JSkier@social.linux.pizza
·
May 06, 2026
JSkier 
@JSkier@social.linux.pizza
#ArchLinux, #FreeBSD, auto, and pi tinkerer. #InfoSec by day. Python, home automation, & occasional OSS contributor. Atypical geek, #runner, #cyclist, & outdoor enthusiast. Husband & father, #veds ❤️🩹 (Vascular Ehlers-Danlos Syndrome) caregiver & supporter. Music lover – just about everything, especially #punk #country #hiphop Here mostly for tech & humor, misc interest, and light politics. Stay #punk; it's always a good day to put a fascist in their place #athiest #adhd #longcovid
social.linux.pizza
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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@OctaviaConAmore@cutie.city
·
Jun 02, 2025
Octavia Con Amore 
Succubard's Library
Succubard's Library
@OctaviaConAmore@cutie.city
A queer little succubus bard using her voice to enchant and soothe people~ 
--------------- 
Pronouns: She/Her 
Languages: JP/EN (both native) 
Age: my violin career could legally drink 
Extra notes: 
Please do not interact with my nsfw posts if you're a minor 
Oh, and don't be afraid to DM if you'd like to ask questions or just chat~ --------------- mastodon.lol → tech.lgbt → vulpine.club → cutie.city If you'd like to help me have food to eat: Ko-fi: https://ko-fi.com/octaviaconamore Patreon: https://www.patreon.com/c/octaviaconamore Every bit helps me survive to play another day 
cutie.city
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@oftencalledcathy@mastodon.ie
·
May 05, 2026
Over There
@oftencalledcathy@mastodon.ie
@c_oreilly on #IrishTwitter Socially awkward, demand avoidant, lone parent to 3, unpaid carer to 2 (1 profoundly disabled, 1 autistic), 1 still living at home Old leftie with #LongCovid. She/her 😷 “I feel all thin, sort of stretched, if you know what I mean: like butter that has been scraped over too much bread.”
mastodon.ie
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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@ddp@fediscience.org
·
May 04, 2026
David Davies-Payne
@ddp@fediscience.org
Paediatric Radiologist, Aotearoa New Zealand 75% #LongCOVID #MECFS 20% #MacDev #iOSdev #SwiftLang 5% #Radiology Born at 322.0 ppm
fediscience.org
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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@tomkindlon@disabled.social
·
May 01, 2026
Tom Kindlon
@tomkindlon@disabled.social
95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness. With ME/CFS 37 years, severely affected 31 years. Health has deteriorated post Covid (March 2022). Irish ME/CFS Association* trustee 29 years. 26 publications in peer-reviewed journals. MEpedia entry which has links to my social media accounts (among other things): https://me-pedia.org/wiki/Tom_Kindlon #ChronicFatigueSyndrome #MECFS #PwME #fedi22 *IrishMECFSAssociation@mastodon.ie
disabled.social
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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@juchti@mastodon.social
·
Apr 30, 2026
Christina Koch
@juchti@mastodon.social
Der Stil ist die Physiognomie des Geistes. (Schopenhauer) Köpenickerin, jetzt im Rheingau. Lehrerin. Antifaschistin. LGBTQIA+ Ally. Seit August 2023 schwer an ME/CFS, POTS, MCAS und CCI erkrankt und 23h/Tag bettlägerig. Ein ❤️ für Prog und die Liebe. Nur der 1. FC Union Berlin #SchönerEisernOhneNazis #fcunion #eisern #bildung #fediLZ #progressiverock #wandern #mecfs #longcovid #mekills #chronicillness
mastodon.social
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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@antiaall3s@chaos.social
·
Apr 25, 2026
Anti. 🐘
@antiaall3s@chaos.social
★ Es gibt nix Gutes, ausser 😷 toot es ★ Boosted means boss move ★ Weckt mich wenn Revolution ist ★ Alpaca 🦙 Ozelot 🐆 Axolotl 🦎 ★ Allen alles ★ Auf allen Spektren "hard to like" Community care for mental health, mutual aid for all. Life is difficult in these times, feel free to ask me for help. write: D/E/F/ read: Sp/It/Port #Muskodus #Twexit #LongCovid #UrbanLoveWarrior #TootFinder #FamilyAbolitionist
chaos.social
"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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@ChristosArgyrop@mastodon.social
·
Apr 24, 2026
Christos Argyropoulos MD PhD
@ChristosArgyrop@mastodon.social
Division Chief, Nephrology, University of New Mexico Posts: Kidney Disease, Diabetes, Transplant, COVID19, Data Science, Bioinformatics, Computing, Statistics Hobbies: Reading about stuff, Sequencing Stuff, Programming Stuff #COVID19IsBad #FlozinatorInChief #RNAsequencing #Nanopore #GLMMs #Rstats #Bayesian #Perl #HPC #Statistics #KidneyDisease #Transplantation #MedEd #ButlerianJihad 🇺🇸
mastodon.social
@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.
1
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@adub@beige.party
·
Apr 05, 2026
A-Dub 🥝
@adub@beige.party
pākehā New Zealander settler & educator-scientist living & working in Dish With One Spoon territory. trans, queer, disabled, autistic, 50-something, covid-cautious, anti-fascist, anti-capitalist, anarchism-curious, working to do & be better. fled twitter in early 2023. background: breaking ocean wave, in shades of teal/blue. avatar: light gray slightly tousled hair, matching short goatee, navy rectangular glasses, light skin, teal shirt, expressive blue eyes, friendly smile #NoBots #NoAI
beige.party
just got my 12th Covid vaccine 💉🚫🦠.
i get a booster every six months. because their effectiveness wanes over time.
#LongCovid
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📺 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.
0
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@JSkier@social.linux.pizza
·
Mar 15, 2026
JSkier
@JSkier@social.linux.pizza
#ArchLinux, #FreeBSD, auto, and pi tinkerer. #InfoSec by day. Python, home automation, & occasional OSS contributor. Atypical geek, #runner, #cyclist, & outdoor enthusiast. Husband & father, #veds ❤️🩹 (Vascular Ehlers-Danlos Syndrome) caregiver & supporter. Music lover – just about everything, especially #punk #country #hiphop Here mostly for tech & humor, misc interest, and light politics. Stay #punk; it's always a good day to put a fascist in their place #athiest #adhd #longcovid
social.linux.pizza
A heads-up I wrote for all us #longcovid peeps.
https://longcovid.blog/p/warning-about-cyp3a-inhibition-paxlovid-and-corticosteroids/
1
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@RonjaBiernat__dup_71568@chaos.social
·
Mar 15, 2026
Ronja
@RonjaBiernat__dup_71568@chaos.social
* Love listening to audio dramas; * Addicted to graphic novels; * Committed to freedom of movement, access to information and queering science; * Interested in social movements, libraries, history and vegan food; and * Into edible plants and cycling. #podcasts #luistertips #Hörspiel #books #boeken #Bücher #audiobooks #luisterboeken #Hörbücher #library #GraphicNovel #FreedomOfMovement #AccessToInformation #Activism #Queer #Feminism #fedi22 #chillies #gardening
chaos.social
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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@rchusid@med-mastodon.com
·
Mar 07, 2026
Ron Chusid 
@rchusid@med-mastodon.com
Private Practice in Internal Medicine Covid Is Not Over Vax, Mask Up & Clean Indoor Air Medicare For All End all arms shipments to Israel Eliminate ICE Oppose both branches of the war party
med-mastodon.com
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@social.linux.pizza
·
Feb 26, 2026
JSkier
@JSkier@social.linux.pizza
#ArchLinux, #FreeBSD, auto, and pi tinkerer. #InfoSec by day. Python, home automation, & occasional OSS contributor. Atypical geek, #runner, #cyclist, & outdoor enthusiast. Husband & father, #veds ❤️🩹 (Vascular Ehlers-Danlos Syndrome) caregiver & supporter. Music lover – just about everything, especially #punk #country #hiphop Here mostly for tech & humor, misc interest, and light politics. Stay #punk; it's always a good day to put a fascist in their place #athiest #adhd #longcovid
social.linux.pizza
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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📺 https://peer.adalta.social/w/kqRH8K2ZTgjShFoaNHUR1g 🔗 🇩🇪🇺🇸🇫🇷 🔗 ℹ️
La publication d’un plan de soins spécialisé marque un tournant dans la prise en charge de ces pathologies invalidantes.
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@Omega_Scribet__dup_34300@mementomori.social
·
Feb 25, 2026
Omega_Scribet
@Omega_Scribet__dup_34300@mementomori.social
Weinig Covid. Links. Vegan. Biologisch. Atheist. Republikein. Houtrookvrij. Freedom internet. ↕️ Dutch. Leftist. Vegan. Organic. Atheist. Anti-monarchist. Clean Air. #CovidIsAirborne 😷 💉 Toots/boosts mostly about #health #gezondheid Posts > 6 months will be deleted. Avatar = a part of my shadow. Banner = garden plants, species: Betony Hummelo (Stachys off. Hummelo). The photo shows the pink/purple flowers (that attract many bees and butterflies). Started in the Fediverse in January 2023
mementomori.social
'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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@gypsyvegan@sfba.social
·
Feb 20, 2026
gypsyvegan
@gypsyvegan@sfba.social
Covid/pandemicene · public health · data privacy · cybersecurity · technofascism · disinformation · systems of power · collapse/preparedness · combatant in the eternal war against normalcy bias · upholder of the precautionary principle #CovidIsNotOver #covidcompetentcommunity #maskup #wekeepussafe #cassandrabrigade #reimaginepossible Note -- if you're here to yell at me about my user name, please educate yourself https://www.gypsy-traveller.org/about-us/frequently-asked-questions/
sfba.social
THREAT MODEL: COVID for Feb. 19th, 2026 by independent journalist @violetblue@mastodon.social
-
#CovidCautious Olympian wins Gold and breaks record
-
#NIAID staffers ordered to remove #biodefense, #pandemic preparedness language on website
-
The musicians making concerts safer with Covid precautions ( #Deerhoof! )
-
#FDA reverses stance to review Moderna #mRNA flu shot application
-
Study: Covid in 39% of hospital air samples during outbreaks
-
France sees its first court case over death from Covid caught in hospital
-
Footballer #JariLitmanen on battling #LongCovid
-
It’s time to take Long Covid pacing seriously
-
Tucson pilot wins Long Covid fight against #FAA
-
The long US surge continues
…and much more.
✨ THREAT MODEL is free to read – please help keep it accessible to all by becoming a patron, even $1 a month makes a difference! ✨
https://www.patreon.com/posts/covid-february-151134668
#ThreatModel #ThreatModelCovid #ThreatModelNewsletters #VioletBlue #COVIDnews #PublicHealth #CovidIsNotOver
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@docjosiahboone__dup_45560@wien.rocks
·
Feb 22, 2026
Wolfgang Hagen
@docjosiahboone__dup_45560@wien.rocks
:: Internist mit Interesse an COVID-19. Kein Virologe :: Obsession: John Coltrane & Rapid Wien :: WienLiebe :: Stadtradler :: #COVID19 #COVID19at #LongCovid #Medizin #MedizinBrennt #SKRapid #WienLiebe #Fahrrad #KlimaWende
wien.rocks
Der schwerst an #LongCovid #MECFS erkrankte Samuel wählte an seinem 21. Geburtstag den assistierten Suizid. Im Sinne seines letzten Wunsches, dass sein Tod "nicht umsonst" gewesen sein solle, erzählen seine Mutter und sein behandelnder Arzt über ihn und über die Versorgungsmängel bei ME/CFS.
https://on.orf.at/video/14311920/hinter-den-schlagzeilen-mutter-von-me-cfs-opfer-sein-tod-soll-nicht-umsonst-sein
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@JSkier@social.linux.pizza
·
Feb 02, 2026
JSkier
@JSkier@social.linux.pizza
#ArchLinux, #FreeBSD, auto, and pi tinkerer. #InfoSec by day. Python, home automation, & occasional OSS contributor. Atypical geek, #runner, #cyclist, & outdoor enthusiast. Husband & father, #veds ❤️🩹 (Vascular Ehlers-Danlos Syndrome) caregiver & supporter. Music lover – just about everything, especially #punk #country #hiphop Here mostly for tech & humor, misc interest, and light politics. Stay #punk; it's always a good day to put a fascist in their place #athiest #adhd #longcovid
social.linux.pizza
Blood pressure has been up (150 / 90s) the past several weeks (I take daily guanfacine too). I know I'm under a lot of justified stress (fascist regime and all). I haven't been protesting but am doing food, security, and other runs for immigrants in the cities. Likewise, I started taking the propranolol I had this morning, and it's already helping.
I probably have POTS, but I haven't seen a cardiologist yet, nor did I go to the Mayo yet for #LongCovid. PCP is out a few weeks. Does anyone else have elevated BP constantly with #LongCovid? What helped?
In addition to guanfacine, I do cardio 3-5 days a week (most likely have some degree of PEM, but I plow through it). Strangely, my pulse is low (RHR 40 bpm); I'm not sure if that is the cardio working there or something else.
14 months later, still dealing with #LongCovid. It really sucks 🙄
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