meg’s malaise

You cannot optimize yourself enough that you will not die.

I think what progressives miss about mass disability from covid is it takes people out of the movement.

I canvassed, phone banked, called reps, volunteered at the polls, wrote letters, advocated locally, mentored.

Now, all I can do is… couch. From one stinking covid infxn.

The journalist who coined the phrase “the #GreatestMEdicalScandal of the 21st century” got interested in ME after this same psych lobby accused him of spreading Long Covid by writing about it. He was so taken aback by their absurdity that he investigated further:

www.theguardian.com/commentisfre...

For those lucky enough to live outside the nightmare world of Myalgic Encephalomyelitis, the man discussed here (Simon Wessely) leads a powerful psych lobby w/ a long history of gaslighting sick people—from Gulf War vets to 9/11 first responders to poisoned Iranian school girls to ME & Long Covid

A young person lies in bed in a dark room, with an eye mask over their face and earplugs in. The text reads, "The Sick Times. Severe people may hold answers to Long COVID. They must be included in research. By Sevda Sarıkaya."

"The most severely affected are not on the margins of Long COVID; they represent its truest and most revealing form. The future of Long COVID research will be measured not by how many trials are launched, but by how many lives they truly represent." - Sevda Sarıkaya, Severe people may hold answers to Long COVID. They must be included in research.

People with the most severe #LongCOVID symptoms represent the most clinically urgent population, yet they remain absent from the evidence base that guides care. They are not beyond the reach of science; they are where real progress begins.

Read more from @neurologistmom.bsky.social: bit.ly/49TMXdz

having #LongCovid means telling people “I’m not feeling well” like every other day. I’ve just stopped saying it. I can’t figure out what else to say.

I'm not going to RT the fucking Atlantic but I do want to remind everyone that one in four U.S. adults is disabled, so one in five students accessing accommodations at their uni is among the most non-story stories ever penned.

PLRC logo on the top left, large decorative PLRC logo on the white background, text in the middle on a purple background that reads, "YOUR GIFT GOES TWICE AS FAR (in white font), We're thrilled to announce that thanks to two generous donors, all donations made to PLRC will be matched up to $100K through January 1. (in black font with gold highlight), patientresearchcovid19.com/donate (at the bottom in blue)

We're thrilled to announce that thanks to two generous donors, the Silver Giving Foundation and Lunardelli-McRee family, all donations made to PLRC will be matched up to $100K through January 1 of next year!

Support our work: patientresearchcovid19.com/donate/

Sometimes I forget that normies don’t understand the “possible permanent decline” part. Yes, getting sick after basic tasks is terrible enough. But we want to LIVE. If we could assuredly recover we’d do ALL THE THINGS, get sick, recover & repeat. That alone would be life-changing. #MECFS #LongCovid

"526 (14%) did not meet criteria for Long COVID at 3 months but had increasing symptoms by 15 months"

I thought I was "finally recovering" multiple times the first year, then got much worse in year 2 and have stayed there.

i can’t believe a good thing happened we should do this more often

The landscape of this country would be entirely different if the Reconstruction Era electoral wins secured by newly freed Black folks had never been stifled by lynchings and pogroms.

The violence now, after decades of wins for queer, trans, Black, Brown, disabled, and migrant folks, same energy.

People with mild ME/Long Covid & people who have recovered, please start advocating for the most severe instead of mildwashing the disease & using your story to sell your personal projects while feeding the media narrative of “individual overcoming” 🙏

A tumblr text post from kdhumecurious. It read as follows: "I get that people don't see the damage they do by spreading covid unless the consequences hit them or someone close to them. But I do. I see suicidal ideation posts in the long covid support groups every week, often from people who have never had mental health struggles before. I hear about kids losing their childhoods, teenagers missing their youth. I hear stories from ultra marathon runners who can't get out of bed and doctors, engineers, and scientists who have to retire because of covid brain damage. When we spread covid, we ruin lives. Not some tiny percentage, but millions of lives. Possibly permanently. In the face of all this pain and damage, I cannot understand the refusal to mask in public. It makes me doubt the goodness of friends and family and people I've known all my life. Especially when I beg them to care, not just about me, but about strangers. Kids who are going to grow up in pain from damage they never should have been exposed to in the first place. Why don't they matter enough to make a change? What magic combination of words can I use to make that pain matter? Why won't you try?"

PEM warrants recognition as a neurological pathology resulting from metabolic and immune dysregulation (3). Approximately 48 hr after a triggering event—physical, cognitive, or emotional—patients experience what is colloquially termed a “crash.” This involves a surge in neurological symptoms that may render them unable to function: profound fatigue, cognitive slowing, hypersomnia, photophobia, phonophobia, tinnitus, nausea, headaches, migraines, executive dysfunction, word-finding difficulties, working memory impairment, pain, and worsening dysautonomia with orthostatic intolerance, mood disorders. Although these symptoms may be present at baseline, they rapidly escalate in the disabling cacophony of the “crash”. Many patients report diurnal variation, with symptoms peaking midday and easing somewhat towards night, repeating daily until resolution, suggesting a neuroimmune process with a circadian rhythm. Patients often experience disablement until the episode resolves over days or weeks.

Great to see a UK GP writing a BMJ e-letter like this:

"Research must consider Post Exertional Malaise as a neurological event underpinning fluctuating cognitive dysfunction in Long Covid"

www.bmj.com/content/390/...

#PEM #LongCovid

It’s an absolute shame that DC fired Gretchen Felker- Martin for exercising free speech and then @bsky.app suspended her account. Every writer here should be decrying this because we have to stand up for each other! This is ridiculous.

I don't mourn white supremacists

Thinking more about the quiet violence & deaths than the loud ones 💙🕯️

The MSNBC commentator saying that most political violence has historically come from the left just once again showed how we suffer from failing to learn history. Lynching, pogroms, race riots, the political violence that ended Reconstruction, and against the Civil Rights Movement. Come on.

At least 2 students injured after shooting at a Denver-area high school, officials say | CNN At least two students are in critical condition after a shooting at Evergreen High School in Evergreen, Colorado, where more than 100 law enforcement officers cleared the school “room by room” as it w...

Two students & the shooter are in critical condition after a shooting at Evergreen High School in Evergreen, Colorado. The shooting happened outside the school.
This is the 47th shooting that took place at a school in the US so far this year 23 were on K-12 school grounds
www.cnn.com/2025/09/10/u...

Shooting at Evergreen High School in Colorado leaves several students hurt; suspect among those injured Three students were critically wounded on Wednesday in a shooting at Evergreen High School in the Colorado foothills. The Jefferson County Sheriff's Office says one of those students is the shooting s...

Save any empathy you were about to give Charlie Kirk, the TPUSA founder, double it, and send it towards Evergreen High School instead.

Three kids in critical condition….

www.cbsnews.com/colorado/new...

Three high schoolers, who likely didn't make a career out of enabling and encouraging fascism, were shot in Colorado today.

🤞🤞

Framing of the Trial Long COVID-associated cognitive impairment is a type of ADRD Studying Long COVID-associated cognitive impairment will provide better insight into factors that drive ADRD, especially in younger previously healthy people Long COVID-associated cognitive impairment may be reversible if we target these factors REVERSE LC

Michael Peluso slide from the RECOVER-TLC conference today.

ADRD = "Alzheimer's Disease and Related Dementias"

As someone affected, I am actually relieved to hear someone be straight about this: Long Covid "brain fog" is dementia. Enough soft-pedaling; it's a crisis.

Wow, well that’s validating 😳 scary, but validating

people are always telling me that we just have to wait for olds to die off & then everything will be fine.

i usually respond with, "the woman who lied about emmett till whistling & got him lynched was 21. the murderers were 24 & 35. there's more to do than wait.”

there will always be hitler youth.

Need this to get national attention, this is such a massive victory for people in Atlanta.