I'm Long COVID Researcher. And I Have Long COVID.
"The only thing we know that makes long COVID worse is getting reinfected. That means I work very hard to avoid reinfection. Since I was infected while wearing an N95 mask and being vaccinated, I know that one-way masking is insufficient protection for me"
#LongCOVID @auscovid19
Source: https://www.miragenews.com/im-long-covid-researcher-and-i-have-long-covid-1418523/
Hey did anybody hear anything yesterday to "remember" or "never forget" the day that we entered the global pandemic called #Covid?
It's been 23 years and we still get bombarded with insistence that we never forget 9/11!!
But not one rememberance of Covid.
DEATHS:
7,090,776 - Covid
2,996 - 9/11
ILLNESSES RELATED TO:
65,000,000 - #LongCovid
45,200 - 9/11
If we had a 9/11 every day since March 11, 2020, the total deaths would still not be as many as the deaths from Covid.
🚨 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
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"
"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
💙 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
🧵 "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
You can see it
And you can feel it
Hopefully now they can see it better too sometimes and actually #N95 #MaskUp
https://www.cidrap.umn.edu/covid-19/long-covid-patients-show-signs-inflammation-pet-mri-scans
Under the watchful eye of the fascist anti-vaxx regime, covid boosters are going to be restricted to those 65 and over or with “preconditions”.
Everyone needs the right to access Covid vaccines.
It’s not over. It’s still killing and disabling. And the vaccines are an important tool to keep folks out of hospital.
There’s three days left to have your say!
These folk respond to force & mass public outcry, so make your voice heard!
https://www.regulations.gov/commenton/FDA-2025-N-1146-0001
#uspoli #fascism #fda #hhs #vaccines #covidisnotover #longcovid
Doctors as Patients
(subtitled)
In this film, five medical doctors open up about living with #PAIS / #IACC conditions like ME, #longCOVID, and chronic #Lyme. [...] They speak candidly about their experiences with illness, what they were taught (or not taught) in medical school, and how that shaped their own treatment decisions—sometimes even leading to harm. They reflect on how becoming patients themselves radically changed their views on medicine, science, and what needs to change in healthcare. It’s raw, honest, and incredibly insightful—for medical professionals, researchers, politicians, and patients alike.
(YT)
https://www.youtube.com/watch?v=J0ywwLIfH_w
(Shared by @venite : who is right about many things, but especially this documentary)
“China noted a rise in outpatient cases from 7.5% to 16.2% and severe hospitalized cases from 3.3% to 6.3%”
The latest COVID variant is sweeping across Asia, causing “razor blade throat” and other concerning symptoms.
The US dismantles reporting, remove access to testing & may restrict vaccines.
Wear a well fitted respirator, it could save a life.
#covidisairborne #covidisnotover #MasksWork #longcovid #disability #ableism
"Simple blood test could provide first reliable diagnosis for ME"
https://www.thetimes.com/article/72d96202-0551-4c68-8c79-2ca903caf059
"Discovery of signature patterns of molecules in the blood of ME patients may signify a turning point in diagnosis, typically made by ruling out other illnesses"
@mecfs @longcovid
"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
Just published from my archives, an interview with KD Drackert, a local Long #Covid activist, #LGBTQIA+ performance artist and all-around fab person. They are a founder of our mask bloc/air filter lending library, Clear the Air ATX.
Read it: https://www.patreon.com/posts/lefts-forgotten-132515558
(Free! No Patreon login/membership necessary)
(📷Kit O'Connell, January 2024 at the @TexasObserver office)
#LongCovid #health #HumanRights #activism #Texas #Austin #politics #USpol #RFKJr #Trump #CovidIsNotOver #MutualAid
![Using data from the UK Biobank, they compared blood samples from 1,455 ME patients with those of more than 131,000 healthy people and identified dozens of molecules that differed in concentrations between the two, as well as different cell counts.
The changes in the ME patients, who all had mild to moderate forms of the disease, were largely related to chronic inflammation, insulin resistance and liver dysfunction. The findings were replicated in a group of American patients and healthy controls.
Professor Chris Ponting, of the university’s Institute of Genetics and Cancer, said: “For so long people with ME/CFS have been told it’s all in their head. It’s not. We see [it] in their blood.](/proxy/post_attachment/747040/dbfef65d00.png "Using data from the UK Biobank, they compared blood samples from 1,455 ME patients with those of more than 131,000 healthy people and identified dozens of molecules that differed in concentrations between the two, as well as different cell counts.
The changes in the ME patients, who all had mild to moderate forms of the disease, were largely related to chronic inflammation, insulin resistance and liver dysfunction. The findings were replicated in a group of American patients and healthy controls.
Professor Chris Ponting, of the university’s Institute of Genetics and Cancer, said: “For so long people with ME/CFS have been told it’s all in their head. It’s not. We see [it] in their blood.")
