loscharlos
@loscharlos.bsky.social
😎🌁🎷 #LongCovid March 2020 😵💫
Reposted by loscharlos
“I felt like I lived a double life. How could this sick side of me be so central, so enormous, yet so unseen by those who knew and loved me?”please read this beautiful essay in @thesicktimes.org: thesicktimes.org/2025/11/28/y...
You know someone with Long COVID. They need you to ask about it genuinely. - The Sick Times
If community-building is a bulwark against autocracy, then asking after one another might be a good place to start.
thesicktimes.org
November 29, 2025 at 2:41 PM
“I felt like I lived a double life. How could this sick side of me be so central, so enormous, yet so unseen by those who knew and loved me?”please read this beautiful essay in @thesicktimes.org: thesicktimes.org/2025/11/28/y...
Reposted by loscharlos
"The problem with Long COVID is that most of society would rather not see it. We want to believe the pandemic was just a bad dream we awoke from years ago. (When I hear someone say during COVID, in the past tense, I want to flip a table.)"
#LongCOVID
Source: archive.md/7Rer1
#LongCOVID
Source: archive.md/7Rer1
November 29, 2025 at 5:56 AM
"The problem with Long COVID is that most of society would rather not see it. We want to believe the pandemic was just a bad dream we awoke from years ago. (When I hear someone say during COVID, in the past tense, I want to flip a table.)"
#LongCOVID
Source: archive.md/7Rer1
#LongCOVID
Source: archive.md/7Rer1
Reposted by loscharlos
A beautifully written account: it reflects my own experience of what it's like to live with Long Covid.
Thank you for sharing.
Thank you for sharing.
November 28, 2025 at 9:11 PM
A beautifully written account: it reflects my own experience of what it's like to live with Long Covid.
Thank you for sharing.
Thank you for sharing.
Reposted by loscharlos
“There are two kinds of people in the world: those who upon seeing someone else suffering think, That could happen to me, and those who think, That will never happen to me. The first kind of people help us to endure, the second kind make life hell.”
November 28, 2025 at 7:43 PM
“There are two kinds of people in the world: those who upon seeing someone else suffering think, That could happen to me, and those who think, That will never happen to me. The first kind of people help us to endure, the second kind make life hell.”
“When people asked, Why do you think it hit you so hard? it seemed to carry a tinge of suspicion. I must have done something wrong to bring #LongCovid upon myself as opposed to it being the cosmic car accident that illness so often is”
@philipandrewhoover.bsky.social thesicktimes.org/2025/11/28/y...
@philipandrewhoover.bsky.social thesicktimes.org/2025/11/28/y...
You know someone with Long COVID. They need you to ask about it genuinely. - The Sick Times
If community-building is a bulwark against autocracy, then asking after one another might be a good place to start.
thesicktimes.org
November 28, 2025 at 7:06 PM
“When people asked, Why do you think it hit you so hard? it seemed to carry a tinge of suspicion. I must have done something wrong to bring #LongCovid upon myself as opposed to it being the cosmic car accident that illness so often is”
@philipandrewhoover.bsky.social thesicktimes.org/2025/11/28/y...
@philipandrewhoover.bsky.social thesicktimes.org/2025/11/28/y...
Reposted by loscharlos
There are >800 LoCITT-T participants, & >200 people who are eligible & just need to take one more step to claim their spot.
There's time for new folks to join!
We're particularly hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...
There's time for new folks to join!
We're particularly hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...
November 26, 2025 at 6:40 PM
There are >800 LoCITT-T participants, & >200 people who are eligible & just need to take one more step to claim their spot.
There's time for new folks to join!
We're particularly hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...
There's time for new folks to join!
We're particularly hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...
Reposted by loscharlos
Up to ~800! 200 to go!! Let's get this out of our normal networks, find people in Puerto Rico, North Dakota, and Mississippi, and make this happen!!!
There are >800 LoCITT-T participants, & >200 people who are eligible & just need to take one more step to claim their spot.
There's time for new folks to join!
We're particularly hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...
There's time for new folks to join!
We're particularly hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...
November 26, 2025 at 6:45 PM
Up to ~800! 200 to go!! Let's get this out of our normal networks, find people in Puerto Rico, North Dakota, and Mississippi, and make this happen!!!
Reposted by loscharlos
We are up to 688 LoCITT participants!
If we could enroll all 1,000 participants within a month of launch (by 11/30), it would send a powerful message about the demand for remote Long COVID clinical trials.
We appreciate the community's help to spread the word:
longcovid.scripps.edu/locitt-t/?ut...
If we could enroll all 1,000 participants within a month of launch (by 11/30), it would send a powerful message about the demand for remote Long COVID clinical trials.
We appreciate the community's help to spread the word:
longcovid.scripps.edu/locitt-t/?ut...
LoCITT-T - Long COVID Treatment Trial
The Long COVID Treatment Trial-Tirzepatide (LoCITT-T) is investigating the efficacy of repurposing this drug to treat Long COVID.
longcovid.scripps.edu
November 21, 2025 at 7:59 PM
We are up to 688 LoCITT participants!
If we could enroll all 1,000 participants within a month of launch (by 11/30), it would send a powerful message about the demand for remote Long COVID clinical trials.
We appreciate the community's help to spread the word:
longcovid.scripps.edu/locitt-t/?ut...
If we could enroll all 1,000 participants within a month of launch (by 11/30), it would send a powerful message about the demand for remote Long COVID clinical trials.
We appreciate the community's help to spread the word:
longcovid.scripps.edu/locitt-t/?ut...
Reposted by loscharlos
The Long COVID Treatment Trial – Tirzepatide (LoCITT-T) is now open for enrollment for people with Long COVID in all states but Hawaii (due to concerns about maintaining temperature control in shipping), DC, and PR:
longcovid.scripps.edu/locitt-t/?ut...
longcovid.scripps.edu/locitt-t/?ut...
October 31, 2025 at 2:49 PM
The Long COVID Treatment Trial – Tirzepatide (LoCITT-T) is now open for enrollment for people with Long COVID in all states but Hawaii (due to concerns about maintaining temperature control in shipping), DC, and PR:
longcovid.scripps.edu/locitt-t/?ut...
longcovid.scripps.edu/locitt-t/?ut...
Reposted by loscharlos
really cool trial of Larazotide at Mass General now expanded and open to both pediatric AND adult participants. rally.massgeneralbrigham.org/study/pediat...
Rally | Long COVID Clinical Trial (7 to 50 year-olds)
Do you or your child have Long COVID? We are studying to see if Larazotide improves symptoms in 7-50 years old. There will be 2 visits at MGH and 4 virtual visits over 8 weeks. Compensation for blood ...
rally.massgeneralbrigham.org
November 14, 2025 at 7:29 PM
really cool trial of Larazotide at Mass General now expanded and open to both pediatric AND adult participants. rally.massgeneralbrigham.org/study/pediat...
Reposted by loscharlos
Beautiful tribute to Alice 💔
Remembering Alice Wong: Writer, Advocate, Friend
Though we were in frequent conversation for a decade, I only got to meet my friend Alice Wong in person just once. And when I did, I was a bundle of nerves—and that was before she cussed me out wi…
lithub.com
November 18, 2025 at 3:49 AM
Beautiful tribute to Alice 💔
Reposted by loscharlos
An honest, heartwarming, and full of laughs tribute to Alice Wong by @thrasherxy.bsky.social.
"giving pleasure, joy, affirmation and care to people you only meet once—or who you might never meet all, such as all the Palestinians Alice cared for these last two years—is the very meaning of love."
"giving pleasure, joy, affirmation and care to people you only meet once—or who you might never meet all, such as all the Palestinians Alice cared for these last two years—is the very meaning of love."
"Remembering Alice Wong: Writer, Advocate, Friend"
Steven W. Thrasher on Meeting and Collaborating with the Outspoken Founder of the Disability Visibility Project
published by @literaryhub.bsky.social | art by @mollycrabapple.bsky.social lithub.com/remembering-...
Steven W. Thrasher on Meeting and Collaborating with the Outspoken Founder of the Disability Visibility Project
published by @literaryhub.bsky.social | art by @mollycrabapple.bsky.social lithub.com/remembering-...
Remembering Alice Wong: Writer, Advocate, Friend
Though we were in frequent conversation for a decade, I only got to meet my friend Alice Wong in person just once. And when I did, I was a bundle of nerves—and that was before she cussed me out wi…
lithub.com
November 17, 2025 at 10:14 PM
An honest, heartwarming, and full of laughs tribute to Alice Wong by @thrasherxy.bsky.social.
"giving pleasure, joy, affirmation and care to people you only meet once—or who you might never meet all, such as all the Palestinians Alice cared for these last two years—is the very meaning of love."
"giving pleasure, joy, affirmation and care to people you only meet once—or who you might never meet all, such as all the Palestinians Alice cared for these last two years—is the very meaning of love."
Reposted by loscharlos
"Remembering Alice Wong: Writer, Advocate, Friend"
Steven W. Thrasher on Meeting and Collaborating with the Outspoken Founder of the Disability Visibility Project
published by @literaryhub.bsky.social | art by @mollycrabapple.bsky.social lithub.com/remembering-...
Steven W. Thrasher on Meeting and Collaborating with the Outspoken Founder of the Disability Visibility Project
published by @literaryhub.bsky.social | art by @mollycrabapple.bsky.social lithub.com/remembering-...
Remembering Alice Wong: Writer, Advocate, Friend
Though we were in frequent conversation for a decade, I only got to meet my friend Alice Wong in person just once. And when I did, I was a bundle of nerves—and that was before she cussed me out wi…
lithub.com
November 17, 2025 at 8:22 PM
"Remembering Alice Wong: Writer, Advocate, Friend"
Steven W. Thrasher on Meeting and Collaborating with the Outspoken Founder of the Disability Visibility Project
published by @literaryhub.bsky.social | art by @mollycrabapple.bsky.social lithub.com/remembering-...
Steven W. Thrasher on Meeting and Collaborating with the Outspoken Founder of the Disability Visibility Project
published by @literaryhub.bsky.social | art by @mollycrabapple.bsky.social lithub.com/remembering-...
Reposted by loscharlos
Oh my goodness please don't do this
I see a lot of people speculating about how Alice died and I am asking you to...please not do that. If her family wants to share information about that on their own time, they will, but the speculation and sometimes outright conspiracy theories are actually really upsetting for them to see.
November 17, 2025 at 4:44 PM
Oh my goodness please don't do this
Reposted by loscharlos
I especially appreciated that Miles’s obituary recorded how much Alice did for people with Long Covid.
November 17, 2025 at 7:22 AM
I especially appreciated that Miles’s obituary recorded how much Alice did for people with Long Covid.
Reposted by loscharlos
I regret I never told her how much it meant to me personally to be included, and how grateful I am for what she did for our movement.
Thank you Alice. For this and so much more, I am so grateful.
4/4
Thank you Alice. For this and so much more, I am so grateful.
4/4
November 16, 2025 at 9:03 PM
I regret I never told her how much it meant to me personally to be included, and how grateful I am for what she did for our movement.
Thank you Alice. For this and so much more, I am so grateful.
4/4
Thank you Alice. For this and so much more, I am so grateful.
4/4
Reposted by loscharlos
When I was first diagnosed w/ME/CFS 8 years ago, we were pretty split off from disability organizing as a result.
But Alice insisted our disabled experiences were just as valid as any other, and through this created space for coalition that has greatly strengthened chronic illness organizing.
3/
But Alice insisted our disabled experiences were just as valid as any other, and through this created space for coalition that has greatly strengthened chronic illness organizing.
3/
November 16, 2025 at 9:03 PM
When I was first diagnosed w/ME/CFS 8 years ago, we were pretty split off from disability organizing as a result.
But Alice insisted our disabled experiences were just as valid as any other, and through this created space for coalition that has greatly strengthened chronic illness organizing.
3/
But Alice insisted our disabled experiences were just as valid as any other, and through this created space for coalition that has greatly strengthened chronic illness organizing.
3/
Reposted by loscharlos
Chronic illness, especially those of us militating for better treatment options, can be an uncomfortable fit w/contemporary US disability activism often premised on the idea that inaccessible society, not our medical conditions, is what disables us (known as the social model of disability).
2/
2/
November 16, 2025 at 9:03 PM
Chronic illness, especially those of us militating for better treatment options, can be an uncomfortable fit w/contemporary US disability activism often premised on the idea that inaccessible society, not our medical conditions, is what disables us (known as the social model of disability).
2/
2/
Reposted by loscharlos
I feel especially grateful for how warmly Alice welcomed chronically ill people into the broader disability community.
1/ #NEISvoid
1/ #NEISvoid
Alice Wong reminded us that community space matters;
"Community is magic. Community is power. Community is resistance."
May Alice’s memory live on in our shared work, our collective flourishing, and our commitment to freedom and dignity for all.
www.thrivingautistic.org/solidarity/
"Community is magic. Community is power. Community is resistance."
May Alice’s memory live on in our shared work, our collective flourishing, and our commitment to freedom and dignity for all.
www.thrivingautistic.org/solidarity/
November 16, 2025 at 9:03 PM
I feel especially grateful for how warmly Alice welcomed chronically ill people into the broader disability community.
1/ #NEISvoid
1/ #NEISvoid
Reposted by loscharlos
This is a great obit, and I appreciated Alice’s fight for Palestinians in Gaza being highlighted. I also want to give a shout out to Miles for asking permission to cite my post when technically you don’t have to do that re media law but still an ethical thing to do.
November 16, 2025 at 10:38 PM
This is a great obit, and I appreciated Alice’s fight for Palestinians in Gaza being highlighted. I also want to give a shout out to Miles for asking permission to cite my post when technically you don’t have to do that re media law but still an ethical thing to do.
Reposted by loscharlos
So uh.
I've spent the last five years working on a book about grief, mourning, who is allowed to grieve and how, and where we go from here, and...
you can now preorder it!
I've spent the last five years working on a book about grief, mourning, who is allowed to grieve and how, and where we go from here, and...
you can now preorder it!
All My Dead Cats and Other Losses: Practicing Good Grief in a Culture That Fears Mourning
Practicing Good Grief in a Culture That Fears Mourning
bookshop.org
November 5, 2025 at 3:59 PM
So uh.
I've spent the last five years working on a book about grief, mourning, who is allowed to grieve and how, and where we go from here, and...
you can now preorder it!
I've spent the last five years working on a book about grief, mourning, who is allowed to grieve and how, and where we go from here, and...
you can now preorder it!
Reposted by loscharlos
500 enrollees in *less than two weeks*! So many clinical trials would take months, or even years, to enroll this number of people.
This is what happens when you plan a trial that meets participants where they are, is not overly onerous, and tests something people think is worth trying.
This is what happens when you plan a trial that meets participants where they are, is not overly onerous, and tests something people think is worth trying.
Our randomized, placebo-controlled trial of tirzepatide (Zepbound) for #LongCovid has already enrolled 500 participants of 1000 planned in less than 2 weeks!
longcovid.scripps.edu/locitt-t/
longcovid.scripps.edu/locitt-t/
LoCITT-T - Long COVID Treatment Trial
The Long COVID Treatment Trial-Tirzepatide (LoCITT-T) is investigating the efficacy of repurposing this drug to treat Long COVID.
longcovid.scripps.edu
November 16, 2025 at 4:49 AM
500 enrollees in *less than two weeks*! So many clinical trials would take months, or even years, to enroll this number of people.
This is what happens when you plan a trial that meets participants where they are, is not overly onerous, and tests something people think is worth trying.
This is what happens when you plan a trial that meets participants where they are, is not overly onerous, and tests something people think is worth trying.
Reposted by loscharlos
Alice Wong, a writer and activist who was born with muscular dystrophy and who fought relentlessly for equal rights and access for people with disabilities, died on Friday. She was 51. nyti.ms/4r9WqEr
November 15, 2025 at 9:33 PM
Alice Wong, a writer and activist who was born with muscular dystrophy and who fought relentlessly for equal rights and access for people with disabilities, died on Friday. She was 51. nyti.ms/4r9WqEr
Reposted by loscharlos
Respect Alice Wong’s call here:
“When I am in public spaces and see most people unmasked either because they think the virus is a hoax, that masking is virtue signaling & a sign of weakness, aren't thinking about it, or that they simply don’t care, I feel like an expendable burden not worth saving.”
“When I am in public spaces and see most people unmasked either because they think the virus is a hoax, that masking is virtue signaling & a sign of weakness, aren't thinking about it, or that they simply don’t care, I feel like an expendable burden not worth saving.”
COVID Isn’t Going Anywhere. Masking Up Could Save My Life.
"When I am in public spaces and see most people unmasked, I feel like an expendable burden not worth saving."
www.teenvogue.com
November 15, 2025 at 5:09 PM
Respect Alice Wong’s call here:
“When I am in public spaces and see most people unmasked either because they think the virus is a hoax, that masking is virtue signaling & a sign of weakness, aren't thinking about it, or that they simply don’t care, I feel like an expendable burden not worth saving.”
“When I am in public spaces and see most people unmasked either because they think the virus is a hoax, that masking is virtue signaling & a sign of weakness, aren't thinking about it, or that they simply don’t care, I feel like an expendable burden not worth saving.”
Reposted by loscharlos
If you don't know who Alice Wong was, please take a moment to read a little about her. And please consider ways you can reduce the ableism she fought against.
Respect Alice Wong’s call here:
“When I am in public spaces and see most people unmasked either because they think the virus is a hoax, that masking is virtue signaling & a sign of weakness, aren't thinking about it, or that they simply don’t care, I feel like an expendable burden not worth saving.”
“When I am in public spaces and see most people unmasked either because they think the virus is a hoax, that masking is virtue signaling & a sign of weakness, aren't thinking about it, or that they simply don’t care, I feel like an expendable burden not worth saving.”
COVID Isn’t Going Anywhere. Masking Up Could Save My Life.
"When I am in public spaces and see most people unmasked, I feel like an expendable burden not worth saving."
www.teenvogue.com
November 15, 2025 at 10:36 PM
If you don't know who Alice Wong was, please take a moment to read a little about her. And please consider ways you can reduce the ableism she fought against.