Sign in

meg’s malaise

@megclems.bsky.social
1.1K followers 613 following 2.6K posts

she/her Long COVID/ME + Dysautonomia since 2020

PostsRepliesMedia
Reposted by meg’s malaise
Dr. Lucky Tran @luckytran.com · 01/08/2026
As we recall the trauma caused by COVID in 2020, we should not forget COVID continues to harm. Many still suffer from Long COVID, people who mask are often harassed, and we haven’t scaled clean air infrastructure. If we truly acknowledge past harms, we should be working to create a better future.
131319404
Reposted by meg’s malaise
Wayside Scribbles @waysidescribbles.bsky.social · 23/07/2026
– I’m just saying you shouldn’t rule out anxiety #longcovid #ableism #satire
A cartoon of a person standing impaled by a large spear. Another person standing opposite them ignores the weapon and says, “I’M JUST SAYING YOU SHOULDN’T RULE OUT ANXIETY”.
1218256
Reposted by meg’s malaise
Kaitlin Is Just Getting Started @gothamgirlblue.com · 08/07/2026
It is an awful time arguing with my disability insurance to cover my ongoing leave due to Long COVID, so I’m asking for some help to bridge the gap until I can get paid the 4+ paychecks I am owed (I may have tried to avoid begging until it was urgent)
paypal.me
Pay Kaitlin Byrd using PayPal.Me
Go to paypal.me/gothamgirlblue and type in the amount. Since it’s PayPal, it's easy and secure. Don’t have a PayPal account? No worries.
23837
Reposted by meg’s malaise
Wayside Scribbles @waysidescribbles.bsky.social · 09/07/2026
– You see, if so many were indeed housebound, you’d expect to see them everywhere! #longcovid #ableism #satire
A cartoon with two men. The man on the left gestures as he says, "YOU SEE, IF SO MANY WERE INDEED HOUSEBOUND, YOU'D EXPECT TO SEE THEM EVERYWHERE!". 
011236
Reposted by meg’s malaise
Anna Holmes @annabookwriter.bsky.social · 05/07/2026
Right, what we are not going to do this month: Tell people they don’t count as disabled Tell people who are not ready to self ID they are disabled Claim we can reclaim the r slur Install “you must be this incapacitated to ride” signs Deny the experience of long COVID havers
312446
meg’s malaise @megclems.bsky.social · 03/07/2026
Damnnnn All Stars, I was already bummed out before I watched the episode. I’m devastated, that should’ve been a double shantay 💔💔💔 #RPDR
020
Reposted by meg’s malaise
World Health Network @thewhn.bsky.social · 23/06/2026
One infection. That's all it takes. For millions around the world, a single COVID infection led to symptoms that lasted months or years. Long COVID can affect the brain, heart, lungs, immune system, and more. (...)
Graphic from the World Health Network on a light gray background. Text reads: “whn.global. World Health Network. Science for a safer, healthier world. One COVID infection. That’s all it takes to develop Long COVID. Mask up.” The words “COVID” and “Long COVID” are highlighted in bright pink, with a pink mask icon below.
217593
Reposted by meg’s malaise
Michiel @murtoz.bsky.social · 03/06/2026
@wired.com this is what your shitty article leads to. Stop denying all of our lived experience. Stop making out like #pwME & #LongCovid aren't experts on our own bodies, our own illness. Lots of us have lived with this for decades. We KNOW what works and what doesn't. Stop publishing eugenics!
0235
Reposted by meg’s malaise
Jessica Price @delafina777.bsky.social · 01/06/2026
WIRED has decided to hide comments pointing out that the author of the “It’s your fault for having Long COVID, you have it because you’re thinking and talking about having it instead of ignoring it” article has no qualifications to be talking about disease management.
113656
Reposted by meg’s malaise
🆂🆃🅴🆅🅴🅽 🌈☕🐸 @zencoffeebreak.com · 02/06/2026
Here's a WAY better Long COVID article. After you've read this evidence-based one, the Wired article will seem very silly
rthm.com
Understanding Long COVID: Causes, Symptoms, and What the Science Says
Explore a comprehensive, science-backed guide to Long COVID. Learn about biological causes, common symptoms like brain fog and PEM, diagnosis, and management.
0167
Reposted by meg’s malaise
Putrino Lab @putrinolab.bsky.social · 28/05/2026
Wonderful day for a new #LongCOVID paper! Thanks to an incredible collaboration with @VirusesImmunity and brilliant work done by @keylas3, we studied the effects of injecting antibodies taken from people with LC into mice compared with what happened www.sciencedirect.com/science/arti... 1/
Graphical abstract of the new paper highlighting the following key concepts:
• Long COVID features autoantibodies targeting neural and
vascular tissues
• Patients’ IgG shows increased ADCP activity against MED20
• Passive transfer of IgG induces pain and fatigue-like
phenotypes in mice
• Mouse pain behavior after IgG transfer correlates with patient-reported chronic pain
615258
Reposted by meg’s malaise
valebodi.bsky.social @valebodi.bsky.social · 23/05/2026
Having #ME/CFS MEans waking up feeling worse than when you went to sleep, no matter how long you’ve managed to sleep. It also means that your day ends almost at the same time that it’s started. Our bodies not only cannot recharge, but they are trapped inside multiple broken physiological cycles.
1233
Reposted by meg’s malaise
Hayley @writagal.bsky.social · 17/04/2026
Just observing that parties who consistently say they back vulnerable communities now have an opportunity to actually back that up in practice by loudly committing to policy to support those impacted by Long Covid, if elected - this is what aligning to the values you say you have actually means 💡🤔
14623
Reposted by meg’s malaise
New Scientist @newscientist.com · 15/04/2026
The immune system going rogue and attacking healthy tissue seems to behind some cases of long covid, a discovery that could open doors towards treatments
newscientist.com
Attacks from our immune system are a cause of long covid
The immune system going rogue and attacking healthy tissue seems to behind some cases of long covid, a discovery that could open doors towards treatments
0176
Reposted by meg’s malaise
borderless @borderless.bsky.social · 03/04/2026
People really memory holed-covid, due to a huge far right propaganda effort. That's why all you hear about is lockdowns, and not: - hospitals out of capacity - Skype calls with family members in quarantine as they died - bodies stored in freezer trailors - mass graves in NYC
351257480
Reposted by meg’s malaise
C.H. Romatowski @chromatowski.bsky.social · 28/03/2026
Some #LongCovid news—Rep. Valerie Foushee has introduced a resolution to recognize Long Covid Awareness Month! 🧵 on how you can support this resolution—and help pave the way for further action!
24013
Reposted by meg’s malaise
Congresswoman Valerie Foushee @foushee.house.gov · 26/03/2026
I introduced a resolution to recognize March as Long COVID Awareness Month to raise awareness about the millions of people living with persisting symptoms after a COVID-19 infection. www.congress.gov/bill/119th-c...
congress.gov
136419
meg’s malaise @megclems.bsky.social · 01/04/2026
Friends with ME/CFS who have had an upper scope & colonoscopy - did it (including the prep) set off PEM for you, and how badly?
221
Reposted by meg’s malaise
Emma 🛏️♿🌱☮️♻️🍉 @veganmua.bsky.social · 01/04/2026
Please donate & share to help a #pwME who has been involuntarily committed to psychiatric ward - #MECFS is not psychological! whydonate.com/fundraising/...
whydonate.com
Fundraiser by Viktoriia Herasymenko | Help unjustly hospitalised in psych ward ME/CFS patient
Viktoriia Herasymenko Needs Your Help | This fundraiser is dedicated to Mateusz Kaczmarek, a severely ill ME/CFS patient and ME/CFS researcher (author of https://journals.plos.org/plosone/article?i...
055
meg’s malaise @megclems.bsky.social · 31/03/2026
Important piece of the article -
Text reading: 

“Limited enthusiasm for fluvoxamine.
Azola said she hasn’t seen much benefit from fluvoxamine in her patients.

“I don’t want to be pessimistic, but that particular intervention is not something that is getting me excited,” Azola said. “Overall, the findings suggest a potential modest benefit.”

People need to be careful how they interpret the study’s results, Azola said. Researchers also need to do “further work” to clarify how improvements in fatigue on a seven-point scale mean for patients in their everyday lives.

Researchers have studied SSRIs in people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a condition also marked by exhaustion and other symptoms, since the 1990s without much success, Azola said. Many researchers consider long COVID to be a form of ME/CFS. Testing SSRIs against long COVID feels like trying to “reinvent the wheel,” Azola said.

“One of the things that has held back long-COVID research is not learning about what's been done and building from that knowledge learned decades ago,” she said.”
0195
Reposted by meg’s malaise
Kirsty Hall @kirstyhall.bsky.social · 28/03/2026
I sometimes wonder if people think we’re exaggerating when we say ‘there’s no medical help for ME/cfs’ but there’s genuinely almost nothing. One fairly useless course (exercises, condescending ‘advice' and CBT) and maybe some low dose amitriptyline, which did fuck all for me.
42913
meg’s malaise @megclems.bsky.social · 25/03/2026
Desperately needed this little sliver of hope today
140
Reposted by meg’s malaise
Robbie Corey-Boulet @rcoreyb.bsky.social · 24/03/2026
Ghana's President John Dramani Mahama, speaking in ​New York on Tuesday, criticised the U.S. administration for what he described as normalising ‌the erasure of Black history, warning such policies could have ripple effects elsewhere. www.reuters.com/world/africa...
reuters.com
Ghana's president, in New York, says US 'normalising' erasure of Black history
Ghana's President John Dramani Mahama, speaking in ​New York on Tuesday, criticised the U.S. administration for what he described as normalising ‌the erasure of Black history, warning such policies co...
0166
meg’s malaise @megclems.bsky.social · 24/03/2026
The irony of me being in a PEM flare from the mental exertion of trying to find answers about PEM… 😞
0141
Reposted by meg’s malaise
#MEAction Network @meactnet.bsky.social · 23/03/2026
ME/CFS Advocacy Week 2026 starts today and it's not too late to join! Solve M.E. & #MEAction Network are building the case to make ME/CFS part of standardized medical education. Register: tinyurl.com/MEActionAdvo2026 Virtual kickoff call today at 12 pm PT/ 3 pm ET! #MECFS #pwME #MedEd
Announcement for ME/CFS Advocacy Week 2026 starting March 23-27 with a virtual kickoff call on March 23 at 12 pm PT/3 pm ET. Register at tinyurl.com/MEActionAdvo2026. Text-based graphic with a megaphone in top corner, text in center, and logos in bottom corners.
01712
meg’s malaise @megclems.bsky.social · 24/03/2026
I’m seeing more and more people claiming to have PEM but not ME/CFS. Is there some new study or something I missed? Is it not pathognomonic?
7130
Reposted by meg’s malaise
Adrenalynn (she/her) @adrenalyn.bsky.social · 04/03/2026
"there is no cure for long Covid" Also no supports while you recover - financial, physical, mental health
06727
Reposted by meg’s malaise
Pandemic 𓅃. Index @panaccindex.bsky.social · 04/03/2026
The “long covid is going away on its own“ myth was started by an influencer named “Health Nerd” who is an Australian epidemiologist who thinks US kids shouldn’t be vaccinated against COVID-19 (cuz AUS/UK don’t) and that NYC should have ran unethical RCTs on hospital visitation in 2020. Not science.
54712
Reposted by meg’s malaise
Martha Smith @mostlymartha.bsky.social · 20/01/2026
You cannot optimize yourself enough that you will not die.
24710
Reposted by meg’s malaise
emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 19/01/2026
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...
theguardian.com
‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot
The notion that this illness is psychosomatic is having devastating effects, says Guardian columnist George Monbiot
412645
Reposted by meg’s malaise
emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 18/01/2026
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
17619
Reposted by meg’s malaise
The Sick Times @thesicktimes.org · 14/01/2026
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
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.
07131
Reposted by meg’s malaise
Tiany✨ @atiany.bsky.social · 17/12/2025
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.
1234
Reposted by meg’s malaise
Marianne Dhenin @mariannedhe.bsky.social · 02/12/2025
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.
114542
Reposted by meg’s malaise
Patient-Led Research Collaborative @patientled.bsky.social · 02/12/2025
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/
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)
13124
Reposted by meg’s malaise
Alexis M. 🎃 @turnoftheshrew.bsky.social · 21/11/2025
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
17029
Reposted by meg’s malaise
Sebastian (they/them) @sickseb.bsky.social · 17/11/2025
"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.
1113
Reposted by meg’s malaise
jenn m. jackson @jennmjacksonphd.bsky.social · 04/10/2025
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.
319447
Reposted by meg’s malaise
emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 27/09/2025
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” 🙏
12416113
Reposted by meg’s malaise
Edania L. @edania.bsky.social · 21/09/2025
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?"
24118
Reposted by meg’s malaise
Tom Kindlon @tomkindlon.bsky.social · 11/09/2025
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
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.
25626
Reposted by meg’s malaise
Roxane Gay @roxanegay.bsky.social · 11/09/2025
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.
15195112796
Reposted by meg’s malaise
mamamoo @thelovelymc.bsky.social · 11/09/2025
I don't mourn white supremacists
514739
Reposted by meg’s malaise
emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 11/09/2025
Thinking more about the quiet violence & deaths than the loud ones 💙🕯️
0271
Reposted by meg’s malaise
Ida Bae Wells @nhannahjones.bsky.social · 10/09/2025
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.
13914115310197