Illness, Long Covid
Edited 267d ago
longcovid
my refresh (App for Covid Conscious Connections)
Hi! I'm Demian! Communist, non-binary, disabled, and COVID-realist from a compassionate and anti-capitalist perspective. I live with extreme chronic pain and fatigue that affects me every day.
For people interesed in connecting with me:
Signal: demian.86
Telegram: demianmasks
Discord: camaradademian
https://www.refreshconnections.com/
#MaskUp #WearAMask #CovidRealist #CovidIsAirbone #LongCovid #YallMasking #DisabledLiberation #DisabilityJustice
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Working on tomorrow's Threat Model: Covid and I just noticed that last week's was the 300th. Three hundred weekly #Covid and #LongCovid news updates. Every week, same time, same day, for 300 weeks. Wow.
Hi, I'm Sean.
I'm from the oldest incorporated city in so-called #canada, #SaintJohn - home of the #irving empire.
I am an iconoclast - staunchly #antifascist, #antiracist, #anticapitalist, somewhere on the #autism spectrum, and 3 years into punishing #LongCovid. #WearAMask!!!
I've worked the last decade as #HeadOfSound at a beautiful heritage #theatre. Before that I was in #tech for a decade doing #development and #reverseEngineering. I've also worked in #electronics and other #audio fields.
I grew up in a musical family and have played in bands since 13. I'm on around 60 albums, have toured canada and the us, and am part of what is likely the most prolific band in canada: #Slugmilk.
I run a home mixing studio and a small printshop and I have a small "datacentre" which #selfhosts this #mastodon instance.
I'm here on the #fedi to learn from everyone, and to help others learn. I will help anyone with anything I can.
I'd love to meet more like-minded friends - don't be shy!
A covid persistente existe.
O Centro Singular de Investigação em Química Biológica e Materiais Moleculares da Universidade de Santiago de Compostela (Ciqus) lidera um novo proxecto internacional centrado na covid persistente.
hola me llamo Demian y necesito ayuda debido a mi situación de discapacidad. Estoy en Málaga, las flores (cerca del centro de salud capuchinos).
en mayo 2024 tuve COVID y me ha dañado el corazón, el cerebro y literalmente de todo el cuerpo. tengo fatiga crónica y estoy viendo el procedimiento para poder pedir una silla de ruedas eléctrica porque no puedo andar más de dos minutos.
necesito ayuda para varias cuestiones
-comida. por la fatiga crónica no me puedo cocinar y necesitaría ayuda de gente que me haga la comida. Lo único que me sienta bien es pollo, pan y patatas. Le daría mi madre la comida que cocinar.
-acompañar con coche citas médicas. Ya sea a la idea o a la vuelta, lo pueda hacerse.
Entiendo que hay un trabajo detrás de cuidar, se paga tanto los gastos como la ayuda. Entender que estamos en una situación precaria pero se entiende que nada es gratis.
+34 613 06 47 40
#malaga #ayudamutua #urgente #liberaciondiscapacitada #longcovid
A research group looked at results for over 97,000,000 people, and found
COVID-19 was associated with a 49% increased risk of new-onset autoimmune-related diseases
and flat out:
SARS-CoV-2 infection increases the risk of autoimmune diseases, particularly those affecting vascular and connective tissue. Risk is amplified by severe infection and attenuated by vaccination
and it's hard to imagine a stronger proof - most countries don't have 97 million people in them!
https://pubmed.ncbi.nlm.nih.gov/41452424/
(via AJ Leonardi quoting Hannah Davis)
Edited 242d ago
Vandaag dan de officiële start van mn nieuwe leven. Einde aan 28 jaar werken. Mooie carrière, van alles gedaan, superveel geleerd, hoogte en dieptepunten. En nu onvrijwillig thuis een nieuw leven leren leven. Emotioneel heb ik het afgelopen jaar geleidelijk afscheid genomen, dus vandaag is niet extra moeilijk. Wel een mijlpaal 😏
My #LongCovid life.
Hello to all the ME/CFS and Long Covid activists out there 👋
Solve ME and #MEAction are joining forces to work on a medical education initiative for this year's Advocacy Week, March 23-27.
More details:
https://solvecfs.org/registration-open-for-me-cfs-advocacy-week-2026/
Registration link (Google docs form):
https://docs.google.com/forms/d/e/1FAIpQLSdR4eWbC6OWn1LAFAJhFg_CFz2xOaLYTPzj6kjSDELhAu0fdg/viewform
![How can we close the knowledge gap in ME/CFS and Long COVID care?
The Ask: We will meet with state and local healthcare leaders and ask for their support for introducing questions on ME/CFS and Long COVID medical exams at the national level.
The Theory of Change: By reaching out to patient safety/regulatory agencies, State Medical Boards, and State Health Leadership/Chief Medical Officers by state, framing ME/CFS education gaps as a patient safety and standard-of-care issue, we will move IACC’s [Infection Associated Chronic Conditions] such as ME/CFS and Long COVID from “optional knowledge” to “standardized knowledge” in clinical care.
Target: State healthcare leadership and patient safety agencies.](/proxy/post_attachment/234736/43e537ca10.png "How can we close the knowledge gap in ME/CFS and Long COVID care?
The Ask: We will meet with state and local healthcare leaders and ask for their support for introducing questions on ME/CFS and Long COVID medical exams at the national level.
The Theory of Change: By reaching out to patient safety/regulatory agencies, State Medical Boards, and State Health Leadership/Chief Medical Officers by state, framing ME/CFS education gaps as a patient safety and standard-of-care issue, we will move IACC’s [Infection Associated Chronic Conditions] such as ME/CFS and Long COVID from “optional knowledge” to “standardized knowledge” in clinical care.
Target: State healthcare leadership and patient safety agencies.")
"Unbound: Illness is not the end of dance"
A short film
(about 6 1/2 minutes)
"Twenty bodies. One thread of movement. Unbound is a short dance film created by individuals living with ME/CFS and/or Long COVID, exploring the tension between constraint and expression, stillness and vitality."
https://www.youtube.com/watch?v=mxK6UKtWuLc
For blind or visually impaired viewers there's an audio track with descriptions of the movements.
1/2
This Long Covid Awareness Day let us remember the millions who've been disabled by the virus.
The people who've been forgotten and left behind.
The folks who have to hide their diagnosis because of the stigma attached to it.
You think you don't know anyone with Long Covid?
I promise, you do:
https://www.disabledginger.com/p/long-covid-awareness-day-2026
#longcovid #longcovidawarenessday #COVIDisAirborne #CovidIsNotOver #sarscpv2 #disability #ableism
RE: https://vis.social/@lia_pas/116920216340348395
Unbound is now available to watch on YouTube! https://www.youtube.com/watch?v=mxK6UKtWuLc
Looking for a way to help on Long Covid Awareness Day?
Solve ME & #MEAction are looking for volunteers for Advocacy Week 2026 (March 23-27)
US doctors often have little to no formal education about ME/CFS, Long Covid, or other infection-associated chronic conditions (IACC)
So the focus this year is on medical education. Details:
https://solvecfs.org/registration-open-for-me-cfs-advocacy-week-2026/
Registration:
https://docs.google.com/forms/d/e/1FAIpQLSdR4eWbC6OWn1LAFAJhFg_CFz2xOaLYTPzj6kjSDELhAu0fdg/viewform
If you volunteer, thank you! ❤️
Edited 186d ago
Long Covid Awareness Day post from Solve ME:
https://solvecfs.org/recognizing-long-covid-awareness-day-resources-for-you/
"Long Covid has affected people of all ages and backgrounds.
For many, it means navigating persistent symptoms that disrupt work, family life, and everyday routines.
For others, it has been the start of a much longer journey with infection-associated chronic conditions, including illnesses like ME/CFS and related disorders."
1/n
#LongCovidAwarenessDay #LongCovid #PostCovid #PASC #MEcfs #CovidIsNotOver
Edit: Volunteers must register to get a link to Monday's kickoff session!
Register here:
https://docs.google.com/forms/d/e/1FAIpQLSdR4eWbC6OWn1LAFAJhFg_CFz2xOaLYTPzj6kjSDELhAu0fdg/viewform
🗣️ ME/CFS Advocacy Week starts on Monday, March 23
First Zoom call starts at noon Pacific, 3 pm Eastern (will be recorded)
More details in the participant toolkit, see links below.
Canva version:
https://www.canva.com/design/DAHDA3p0_NY/oTfLyW-lmGZIlbDdQfqmoA/view
PDF version:
#USPol #MEcfs #PwME #LongCovid #PwLC #PostCovid #MedEd #ChronicIllness
Edited 180d ago
🧵 Info on #MEAction's Millions Missing 2026 campaign!
https://www.meaction.net/millionsmissing26
International ME/CFS Awareness Day is coming soon - May 12!
ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and Long Covid are disabling chronic illnesses that get far less funding for research than they deserve based on disease burden.
You can find some basic facts about ME/CFS here:
https://www.meaction.net/learn/what-is-me
1/5
Edited 163d ago
Hello 👋
I need your help! We need as many signatures on this community letter as possible! Anyone in the USA can sign! Allies needed!
Solve ME & #MEAction are asking State Medical Boards to add ME/CFS questions to national licensing exams.
Doctors need to learn about ME/CFS!
Please sign here:
https://docs.google.com/forms/d/e/1FAIpQLSdXIoHN1Ej7qadY4fhGF7BZB8dtX7zWul0jugb4sh75Ybl2RA/viewform
There are a few pages (scroll down to click next) but it doesn't take long.
Boosts appreciated!
Thank you ❤️
Thread with a message from Solve ME:
"A proposed federal rule could let the government cancel active ME/CFS research mid-study when political priorities change.
The public comment window closes July 13.
Here's what you can do."
1/5
Edited 95d ago
I think I am noticing a pattern wrt recovering from pem.
I do too much, eg a hospital visit.
I know it's too much beforehand so I plan empty days afterwards to stay home and rest.
After a few days I think I feel okay so I go out for the smallest errand.
The next day I am even more tired than the day after my hospital visit.
I'm confused about this and I don't know how to handle it. Does it mean I have to rest longer? Does it mean that I have rested too much?
People with pem, any advice?
(people without pem, stfu)
I'm continuing to offer my latest album for free for #DisabilityPrideMonth!
I live with #longCOVID, #fibromyalgia, and #MECFS.
I'm also autistic and suffer major depression.
I wrote this song grappling with what resistance and activism might look like given the limits my disabilities impose. I hope it may offer you some respite as we fight an increasingly cruel system.
https://arendleejessurun.bandcamp.com/track/youre-not-the-only-one-atlas-song
Today, the Dutch Long COVID Foundation announced a new national research and innovation center for long COVID and other forms of post-acute infectious syndrome (PAIS).
https://www.stichtinglongcovid.nl/nieuws/research-innovation-center-long-covid
Great news! But funding remains a major bottleneck.
So please help, which you can do via my Amsterdam marathon fund raiser, targeting €50,- for each of my 42K:
https://supporta.com/htg9/6mynzkh7vh.
Thanks!
#longcovid #stichtinglongcovid #cfs #mecfs #mecvs #islc #islcpais #runnersofmastodon
What if movement didn't have to be big to matter? Unbound is a film woven from 20 bodies, 20 stories, and 1 thread of connection.
Join us for the premiere on July 29th at 6:30 PM ET. https://www.eventbrite.com/e/unbound-global-premiere-live-qa-tickets-1990987249459
A reflection on my process for this film on my blog: https://liapas.com/2026/07/11/unbound-a-dance-film/
Dear Fediverse, can you please help me find the overlap between these three groups?
A: people willing and eager to wear a respirator indoors
B: people interested in board games
C: people living in or close to berlin
I can't be the only one, right? Boosts would be highly appreciated, maybe you know someone who knows someone...? Thank you!
#stillmasking
#maskup
#wearamask
#covidisnotover
#longcovid
#chronicillness
#berlin
#boardgames
#brettspiel
#venndiagram
Question for people who have both PTSD and also [that basket of diseases that comprises ME/CFS, MCAS, dysautonomia, hEDS, Neuropathy etm.]
Edited 13d ago
"Why Is No One Talking About Long COVID?
— Attention has waned but patients are still suffering"
https://www.medpagetoday.com/opinion/second-opinions/122902
Pretty good basic info, but sadly ME/CFS is not mentioned even though COVID infections can trigger ME/CFS. The number of ME/CFS cases have increased since the pandemic.
See this Bateman Horne blog post ("COVID-19 Triggers ME/CFS") for more: