longcovid

115d

Direct aid for disabled comrade.
Recaudación de fondos para camarada discapacitado.

Hola, me llamo Demian, soy discapacitado con Crohn, endometriosis y Long COVID. tengo desnutrición severa y el Long COVID me ha dejado más discapacitado que nunca. Necesito ayuda para pagar los medicamentos y taxis que necesito para ir al médico al no poder apenas caminar por el Long COVID.

Hi, my name is Demian. I'm disabled with Crohn's disease, endometriosis, and Long COVID. I have severe malnutrition, and Long COVID has left me more disabled than ever. I need help paying for the medication and taxis I need to get to the doctor since I can barely walk due to Long COVID. linktr.ee camaradademian

#mutualaid #disabilityjustice #longcovid #yallmasking #covidisnotover @mutualaid @disability

https://linktr.ee/camaradademian

Hola, me llamo Demian, soy discapacitado con Crohn, endometriosis y Long COVID. tengo desnutrición severa y el Long COVID me ha dejado más discapacitado que nunca. Necesito ayuda para pagar los medicamentos y taxis que necesito para ir al médico al no poder apenas caminar por el Long COVID. Hi, my name is Demian. I'm disabled with Crohn's disease, endometriosis, and Long COVID. I have severe malnutrition, and Long COVID has left me more disabled than ever. I need help paying for the medication and taxis I need to get to the doctor since I can barely walk due to Long COVID. linktr.ee camaradademian

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258d

🚨 On May 12, International ME Awareness Day, #MEAction will be sending out an SOS for ME/CFS and Long Covid 🚨

SOS = Save our support systems. Save our science. Save our society.

A protest will be held at the Capitol in Washington, DC, and folks can also join in from home

#MEAction encourages all folks with disabilities to join!

More details / toolkits here:

https://www.meactions.org/millionsmissing2025

Please boost! ❤️

@mecfs @longcovid
@disability

#MEcfs #MillionsMissing #LongCovid #MEAwareness #Disability

Cartoon protest art with detailed, dark lines depicting the Statue of Liberty sinking to her crown in bright red liquid. She holds her torch high above an ocean of red next to the words "#Millions Missing SOS". Additional text says, "May 12, 2025, Protest - Washington, DC & From Home. 2025 #MillionsMissing" Artwork by Jessica Kaushansky.

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257d

🗣️ Help us send out a strong SOS message on May 12th, International ME/CFS Awareness Day

This video from Laurie Jones, executive director of #MEAction, invites you to join our protest in Washington, DC, or online

Please join us - we need as many folks as possible!

More details here:

https://www.meactions.org/millionsmissing2025

Thank you! ❤️

(see replies for full text of the video)

@mecfs
@longcovid
@disability

#MEcfs #PwME #LongCovid #PwLC #Disability #MillionsMissing #MEAwareness

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251d

🚨 Call to action! 🚨

#MEAction has written a letter to NIH demanding full funding for the ME/CFS Research Roadmap

And they've asked folks to sign on to this letter:

https://airtable.com/appEwdLZCdtR0xwuv/pagMvv9RZYLxZiDFe/form

From the letter:

"NIH budget for ME/CFS is $13 million for fiscal year 2024/25– the lowest in comparison to its disease burden of any disease monitored by NIH"

Even if you don't sign please boost 🙏

Thank you! ❤️

@mecfs @longcovid

#MEcfs #PwME #LongCovid #NEISVoid #ChronicIllness #Disability

Demand NIH Fund the ME/CFS Research Roadmap!

#MEAction is sending an urgent letter to the newly appointed National Institutes of Health (NIH) Director, Dr. Jay Bhattacharya, calling for the NIH to allocate $50 million to fund the ME/CFS Research Roadmap.

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244d

💙 It's May 12th, International ME/CFS Awareness Day 💙

My ME/CFS onset was in Jan 1990

🚨 Many recent ME/CFS cases have been triggered by COVID 🚨

In this thread I plan to post about 3 main things:

1. My ME/CFS story (briefly)

2. Helpful resources for patients and clinicians

3. Advocacy options for patients & allies (friends/family) - mostly US based

1/n

@mecfs @longcovid

#MEcfs #LongCovid #PostCovid #Disability #DisabilitySOS #CovidIsNotOver #MillionsMissing #MEAwareness #WorldMEDay

I am one of the 2025 Millions Missing calling out an SOS:
Save our support systems.
Save our science.
Save our society.

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245d

🧵 "Two Households, Both Alike in Indignity: An Interview with Anne Ursu"

https://lithub.com/two-households-both-alike-in-indignity-an-interview-with-anne-ursu/

Anne Ursu is the author of Not Quite a Ghost, a middle grade novel about "an eleven-year-old, Violet, who comes down with a post-viral illness"

I'll post a few quotes in the replies.

1/n

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC #ChronicIllness #PostCovid #PostViral #MedEd

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241d

si eres activista deberías llevar mascarilla

me gustaría que pienses en cuáles eran las razones por las que utilizabas mascarilla estos últimos años y que es lo que te ha hecho el dejar de utilizarla

seguramente ni siquiera hubo un punto donde realmente te preguntaste si era completamente seguro dejar de utilizarla, sino que simplemente seguiste con la normalidad impuesta por el estado

a lo mejor te hiciste en algún momento alguna pregunta, pero no pudiste acceder a realmente información verificable sobre el daño que se hace cuando se normalizan y banalizan infecciones

· El 50% de las infecciones son asintomáticos.
· Mínimo 10% de las infecciones acaban en COVID persistente.
· Las reinfecciones nos destrozan.
· El COVID se propaga y mueve como el humo de un cigarro, piensa en las personas de tu alrededor y en ti como personas que están todo el día fumando, se hace más visual entender cómo se mueve el COVID.
· En las infecciones con síntomas se tarda un par de días en dar los síntomas lo que quiere decir que estás por lo menos un par de días infectando sin saberlo.
· Las vacunas no son suficientes y además, no las están actualizando en base a las nuevas variantes. Los niveles de anticuerpos producidos disminuyen significativamente en los meses posteriores a la vacunación. Las vacunas no están evitando reinfecciones, ni el contagio, ni las secuelas persistentes del COVID.
· Eres infeccioso de COVID por lo menos 10 días.
· Desde el comienzo de la pandemia ha habido una gran propaganda en torno a la normalización de la enfermedad y una forma meritocrática de entender la inmunidad (el mejor es que nunca se verá afectado, el débil es que ‘tendrá que morir’ por la prosperidad).

https://comunistadisca.substack.com/p/activista-que-no-usa-mascarilla-o

#CovidPersistente #LlevaMascarilla #RealistaCovid #AutoDefensaSanitaria #CovidSonAerosoles #birdflu #gripeaviar
#MaskUp #WearAMask #CovidRealist #CovidIsAirbone #LongCovid

si eres activista contra las opresiones y no utilizas mascarilla: o no sabes realmente el daño que estás causando o estás decidiendo ignorar a las personas discapacitadas, esta es una explicación

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223d

Artikel behandelopties PostCovid netwerk Nederland
https://www.postcovidnl.nl/nieuws/pcnn-post-covid-behandelopties-voor-specifieke-klachten

Info voor professionals en patiënten C-support - Nl talig
https://www.c-support.nu/

Info NL patientenorganisaties
https://longcovidnederland.com/
https://mecvs.nl/

Info Nederlands LC onderzoek
https://www.stichtinglongcovid.nl/

Info voor professionals met links naar YouTube
https://batemanhornecenter.org/education/top-resources/

Overzichtsartikel
https://health.mountsinai.org/blog/five-years-post-pandemic-heres-what-weve-learned-about-long-covid/

Filmpjesreeks LongCovid Physio UK
https://youtube.com/playlist?list=PLzyLGd4jQxQ-zNjmOUR43ha53AjXHU3HH

#LongCovid #postcovid

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49d

"Why I Can’t Just Meet You for Dinner"

https://substack.com/home/post/p-178293036

A description of PEM (post-exertional malaise) along with some tips for how to explain it to loved ones.

"Post-exertional malaise (PEM for those of us who live with it intimately) is not tiredness. It’s not even exhaustion.

It’s a systemic crash that occurs after physical, cognitive, or emotional exertion that exceeds your body’s brutally reduced energy envelope."

@mecfs @longcovid

#MEcfs #LongCovid #PEM #ChronicIllness

Here’s what most people don’t understand: PEM isn’t just a temporary setback. Frequent PEM crashes have compounding effects.

Every time you push through PEM (every time you ignore the warning signs and keep going because you have to work, or because someone is visiting, or because you’re trying to maintain some semblance of a normal life) you’re not just paying the price in the moment. You’re potentially worsening your baseline function permanently.

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300d

It's my birthday today, and I wrote this thing on my blog about how I experienced the last year: https://www.johannesjaeger.eu/blog/living-with-fatigue-and-a-society-that-does-not-care.

I really needed to get this out of my system.
Millions are missing, and nobody seems to care.
#MECFS #MCAS #LongCOVID

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203d

collaborative and community blog to leave our mark around the love of care and the fight against eugenics

https://masksarecommunity.substack.com/about

about this blog:
hello, my name is demian, i have been thinking for a few months about starting a collaborative blog, i have my own blogs where i upload my reflections, but i think it would be interesting to have a common space where i could publish and have the freedom to publish with or without a name and have it all in one blog, one of hope, love and radicalism.
the struggle against eugenics, like other radical struggles, feels very lonely. especially when the state and the system have put so much money in individualistic propaganda both before the pandemic and especially after the beginning of the pandemic.
having compassionate common spaces of love for the care of the masks and the fight against eugenics is key to be able to continue the fight. that is what this blog is for. if you would like to participate and/or help with the management of this blog, you can communicate through:
mvione@proton.me
https://t.me/demianmasks
signal: demian.67

#CovidPersistente #LlevaMascarilla #RealistaCovid #AutoDefensaSanitaria

#MaskUp #WearAMask #CovidRealist #CovidIsAirbone #LongCovid

collaborative and community blog to leave our mark around the love of care and the fight against eugenics

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283d

News from #MEAction - planning for #MillionsMissing 2025 (May 12)

"If you are interested in organizing a protest, gathering in a park as a community or making art, please join one of our protest organizing meetings on Thursday, April 10"

Meeting 1: Thursday, 4/10, 12pm PT/3pm ET
https://us06web.zoom.us/meeting/register/EHwZzzubSpqIi31vM1VRNQ#/registration

Meeting 2: Thursday, 4/10, 3pm PT/6pm ET
https://us06web.zoom.us/meeting/register/2hriH4c1RU6VbSGbEBrjHA#/registration

Details:
https://www.meaction.net/2025/04/02/millionsmissing-2025-sending-out-an-sos/

@mecfs

#MEcfs #PwME #LongCovid #PwLC #MEAwareness #May12 #MyalgicEncephalomyelitis

Join Us for Millions Missing 2025

- (USA) Join the protest at the Capitol in Washington, D.C.
- Host your own #MillionsMissing protest or gathering
- Show up on social media on May 12th
- Get creative—create SOS art with messages directed at your government/elected officials
- Check out UK’s #MillionsMissing campaign—coming soon!

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183d

"Power, Progress, and Patient-Led Change"

An overiew of Advocacy Week 2025 from Solve ME:

https://solvecfs.org/advocacy-week-2025-power-progress-and-patient-led-change/

"In a single week, the Solve M.E. community took part in 187 congressional meetings—sharing powerful personal stories, urgent data, and clear policy goals with Senate and House offices."

@mecfs @longcovid

1/n

#USPol #MEcfs #LongCovid #POTS #Congress #Senate #Advocacy #SolveME

What We Did Together:

- 187 total meetings with congressional offices

- 226 attendees from across 36 states and D.C.

- Met with 67 Senate and 120 House offices (116 Democratic, 69 Republican, 2 Independent)

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272d

I think I've already posted this but it's worth re-posting:

"Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again"

https://www.salon.com/2025/04/01/admins-on-chronic-disease-research-abandons-long-and-mecfs-patients-again/

"Budget cuts and the dismantling of federal agencies are making it harder for patients with long COVID and ME/CFS"

@mecfs @longcovid

Edit: added hashtag

#USPol #LongCovid #MEcfs #Research

Dr. W. Ian Lipkin, director of the Center for Infection and Immunity at Columbia University, has spent more than two decades studying a debilitating chronic illness that is often misunderstood and stigmatized, known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Lipkin's work faces an uncertain future after grants from the federal government were terminated last week, stripping patients with this chronic disease of one of the few sources of research endeavoring to understand their condition and find treatments, he said.

The Center for Solutions for ME/CFS is one of a few centers across the country dedicated to studying this condition, but it can no longer remain operational, Lipkin said. It was receiving funding from the National Institutes of Health, but the Trump Administration cut about $250 million in grants to Columbia, which the agency said occurred due to the university's "continued inaction in the face of persistent harassment of Jewish students.”

Edited 272d ago

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267d

Estudios en 14 países muestran una tasa de COVID persistente del 25% al 30%

https://www.cidrap.umn.edu/covid-19/studies-across-14-nations-show-25-30-rate-long-covid

https://autodefesasanitaria.substack.com/p/estudios-en-14-paises-muestran-una

#MaskUp #WearAMask #CovidRealist #CovidIsAirbone

#LlevaMascarilla #RealistaCovid #CovidSonAerosoles #birdflu #gripeaviar #LongCovid

Estudios en 14 países muestran una tasa de COVID persistente del 25% al 30%

Un nuevo estudio publicado en BMJ Global Health, realizado en 13 países de ingresos medios y altos, revela que el 25% de los pacientes reportaron síntomas de COVID persistente después de haber tenido COVID-19 sintomático. Además, el COVID persistente es significativamente más prevalente en personas de países con menores recursos y en pacientes de origen árabe o norteafricano. Un segundo estudio, publicado en BMC Public Health, mostró que, entre 3.693 pacientes con COVID-19 en China, el 30,2% reportó al menos un síntoma persistente de COVID prolongado, y el 10,7% indicó que los síntomas afectaban su vida diaria.

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271d

Peeps with long Covid who live in and around NYC

Mount Sinai is taking applications for a long covid clinical trial using low-dose rapamycin.

#LongCovid @longcovid #rapamycin #Sirolimus #NYC #NY #NJ #CT

Flyer for the clinical trial mentioned in my post.

Icahn School of Medicine at Mount Sinai
Participants Needed for Long COVID Clinical Trial
What we are investigating:
We are investigating the effects of a 12-week protocol of low-dose Sirolimus (rapamycin) compared to a placebo in adults with Long COVID.

Areyou eligible?
You need to:
1. Have a confirmed diagnosis of Long COVID and a documented positive COVID test
2. Be 18 years or older
3. Live inthe NYC area

What to expect if you pass the screening process:
1. There are five (5) required in-person study visits over a 6-month period.
2. This study involves in-person visits, blood draws, saliva
collection, and completion of online surveys.
3. You will receive the study drug or placebo for 12 weeks in an increasing dose.

Compensation: Up to $150
If you are interested, please email: CoreResearch@mountsinai.org

STUDY 24-01366
Principal Investigator: Dr. David Putrino, PT, PhD
Icahn School of Medicine at Mount Sinai

Effective Date: 2/11/2025
End Date:1/13/2026

Edited 271d ago

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42d

¿Será esta la ola de COVID que me acabará matando?
Viendo los nuevos contagios, como a las nuevas variantes, pienso ¿es aquí donde me convierto en uno de los números que dicen daños colaterales?

¿Será aquí donde se diga que hay pocas personas que mueren por coronavirus y que sienten mi muerte pero que a veces pasa? ¿Es aquí donde desarrollo enfermedades y discapacidades más terribles como consecuencia de otra infección por COVID? ¿Es aquí donde mi COVID persistente empeorará?

¿Será aquí donde nuevas enfermedades serán utilizadas como una excusa para la violencia por parte de algunos médicos? ¿Es aquí donde un nuevo episodio de debilidad transformará mi vida y me hará ver de nuevo las personas que realmente están dispuestas a cuidarme y las que tienen demasiado ego para ello?

El COVID no es azaroso ni inevitable; es pura matemática, y cualquier forma de reducción de daños, cualquier manera de romper la cadena de transmisión, marca la diferencia. No dejes que el sistema te diga qué palabras usar ni qué significados darles. Las vidas de las personas con discapacidad o de las personas categorizadas como débiles no son desechables, y debemos luchar contra esa idea.

En 2020 estuve muy cerca de mi muerte y recuerdo que cuando sentía que iba a irme, me sobrecogió recuerdos reconfortantes, personas había amado o amaba, eventos que me hacían sentir fuerza.

Quiero que toda persona Consciente del COVID sepa que es gracias a vuestro cuidado comunitario que respiro ahora, y ni hasta mi último respiro olvidaré esto.

#CovidPersistente #LlevaMascarilla #RealistaCovid #CovidSonAerosoles #birdflu #gripeaviar

#MaskUp #WearAMask #CovidRealist #CovidIsAirbone #LongCovid

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145d

Not a single mask in sight. Very disappointing to see this, especially as we're in a COVID uptick. The number of people in photo 1 who have their hands up is probably roughly equal to how many will leave this conference with COVID or some other respiratory illness.

https://fosstodon.org/users/scala_lang/statuses/115056704676502452

#dev #tech #coding #conference #scala #ScalaDays #CovidIsNotOver #CovidIsAirborne #LongCovid #MaskUp #accessibility

Edited 145d ago

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137d

🚨 Call to action!

Help protect key ME/CFS language in the House Appropriations process.

The Senate included several major wins for the ME/CFS community in its FY26 funding bills. We need the House to ensure this language makes it all way through committee votes, full floor votes and the reconciliations process.

Please contact your house representative! You can use this automated toolkit to send email or call:

https://solvecfs.quorum.us/campaign/136258/

@mecfs @longcovid

#MEcfs #LongCovid #USPol

Call to Action!
Ask House Committee Members to ensure the Senate language on ME/CFS makes it through the reconciliations process.
Solve M.E. Advocacy

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110d

Happy to see that Violet Affleck is still doing advocacy work for Long Covid! Many thanks to The Sick Times for this story ❤️

"Violet Affleck advocates for children with Long COVID, masks, and clean indoor air at United Nations event"

https://thesicktimes.org/2025/09/23/violet-affleck-advocates-for-children-with-long-covid-masks-and-clean-indoor-air-at-united-nations-event/

“It is neglect of the highest order to look children in the eyes and say, ‘We knew how to protect you, and we didn’t do it" 💯

@longcovid
@mecfs

#COVID #LongCovid #PASC #MEcfs #CovidIsNotOver #AirQuality #MaskUp

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19d

Illness, Long Covid

Edited 19d ago

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10d

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

.

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.

I want to have calls/videocalls! In general, my limits regarding the phone are to prioritize calls because I have very little human contact (due to ableism and my Long COVID) and I also don't like to spend too much time with messages because they make me feel very dissociated and not connected to people (and in English is much difficult because its my third language).

I believe in humanity. I believe in organization. It is not true that most people are selfish, bad, stupid, ignorant, or unwilling to learn about COVID. Most people do not know what is going on, or feel powerless to stop it, or both. I don’t blame people for not masking, I ask myself how can I organize a collective response to this eugenic.

Spanish, Italian and English.

Job: being my own advocate against ableist doctors
Politics:
communist, liberation by all means necessary (yes, including violence)
Hometown:
italy,
Gender and Sexuality:
transmasc
Covid Behaviors
I am living with Long Covid
I'm immunocompromised/have a high-risk health condition
I only leave home/outdoors for medically necessary reasons

Let's Talk About
Freetime:
watching sitcoms, reading radical theory, doing online events for our community!
Something we could do together chatting or seeing a serie together!
Hobbies:
coloring, cooking
Talents:
i loooove organizing
All-time favorites:
Book:
soledad brother by george jackson
Movie:
en guerre
TV Show:
lost, parcs and recs

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95d

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.

https://www.patreon.com/posts/covid-october-2-140250567

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96d

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!

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92d

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

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