Sage
@sagetoko.bsky.social
Applied Physics PhD working in industry. Chronically ill maker of things. Fiber arts, cooking, dogs. she/her. Exceedingly fond of heffalumps. 🐘❤️
#LongCovid #MECFS #EDS #POTS
#LongCovid #MECFS #EDS #POTS
Reposted by Sage
bringing this statement over from Alice’s Twitter. it appears the below was Alice’s last post before passing. I am heartbroken
November 15, 2025 at 2:37 PM
bringing this statement over from Alice’s Twitter. it appears the below was Alice’s last post before passing. I am heartbroken
Reposted by Sage
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 Sage
Oh no I just heard we lost Alice. This is terribly sad. She was an incredible, talented, powerful voice of the disability community. She stood strong for herself and for all of us. She will be missed immensely.
‘Death remains my intimate shadow partner. It has been with me since birth, always hovering close by. I understand one day we will finally waltz together into the ether. I hope when that time comes, I die with the satisfaction of a life well-lived, unapologetic, joyful, & full of love.’
—Alice Wong
—Alice Wong
November 15, 2025 at 4:33 PM
Oh no I just heard we lost Alice. This is terribly sad. She was an incredible, talented, powerful voice of the disability community. She stood strong for herself and for all of us. She will be missed immensely.
Reposted by Sage
‘Death remains my intimate shadow partner. It has been with me since birth, always hovering close by. I understand one day we will finally waltz together into the ether. I hope when that time comes, I die with the satisfaction of a life well-lived, unapologetic, joyful, & full of love.’
—Alice Wong
—Alice Wong
November 15, 2025 at 6:12 AM
‘Death remains my intimate shadow partner. It has been with me since birth, always hovering close by. I understand one day we will finally waltz together into the ether. I hope when that time comes, I die with the satisfaction of a life well-lived, unapologetic, joyful, & full of love.’
—Alice Wong
—Alice Wong
Reposted by Sage
I'd guess that 85-90% of American scientists would be ineligible for future funding under this law, maybe close to 100% in the R1 universities. So much for funding proposals based on scientific merit.
Apart from being sinophobes, the people pushing this have no clue how science or higher ed works.
Apart from being sinophobes, the people pushing this have no clue how science or higher ed works.
“The prohibited activities would include joint research, co-authorship on papers, and advising a foreign graduate student or postdoctoral fellow. The language is retroactive, meaning any interactions during the previous 5 years could make a scientist ineligible for future federal funding.”
U.S. Congress considers sweeping ban on Chinese collaborations
Researchers speak out against proposal that would bar funding for U.S. scientists working with Chinese partners or training Chinese students
www.science.org
November 14, 2025 at 11:31 AM
I'd guess that 85-90% of American scientists would be ineligible for future funding under this law, maybe close to 100% in the R1 universities. So much for funding proposals based on scientific merit.
Apart from being sinophobes, the people pushing this have no clue how science or higher ed works.
Apart from being sinophobes, the people pushing this have no clue how science or higher ed works.
WHAT
TIL that blood platelets have serotonin receptors, which is why anemia can mimic depression symptoms and that is absolutely fucking fascinating.
November 11, 2025 at 5:48 AM
WHAT
Reposted by Sage
#NEISvoid PSA
TIL patients and caregivers can get free access to Elsevier papers!
Email your request to [email protected] and include confirmation you are a patient. Turnaround is 48 hours.
#LongCovid #MECFS
TIL patients and caregivers can get free access to Elsevier papers!
Email your request to [email protected] and include confirmation you are a patient. Turnaround is 48 hours.
#LongCovid #MECFS
November 10, 2025 at 7:45 PM
#NEISvoid PSA
TIL patients and caregivers can get free access to Elsevier papers!
Email your request to [email protected] and include confirmation you are a patient. Turnaround is 48 hours.
#LongCovid #MECFS
TIL patients and caregivers can get free access to Elsevier papers!
Email your request to [email protected] and include confirmation you are a patient. Turnaround is 48 hours.
#LongCovid #MECFS
Reposted by Sage
Living with Long COVID often feels like living in a horror movie. Along with your disease comes a creepy Hive Mind refusal to acknowledge the dangers of COVID infection. In Vince Gilligan's new Apple TV show Pluribus, the Hive Mind comes to life:
www.thegauntlet.news/p/pluribus-c...
www.thegauntlet.news/p/pluribus-c...
"Pluribus" captures the isolation of COVID-awareness in a COVID denialist world
For years I've described having Long COVID as living in a horror movie. Now that horror movie (well, prestige Apple TV show) is here.
www.thegauntlet.news
November 10, 2025 at 6:41 PM
Living with Long COVID often feels like living in a horror movie. Along with your disease comes a creepy Hive Mind refusal to acknowledge the dangers of COVID infection. In Vince Gilligan's new Apple TV show Pluribus, the Hive Mind comes to life:
www.thegauntlet.news/p/pluribus-c...
www.thegauntlet.news/p/pluribus-c...
Reposted by Sage
When asked by Stephen Colbert why he was wearing a mask in public, Tom Hanks said..
“I’ve had Covid enough in my life I don’t need to do that again. I’m wearing this for health reasons”
More celebrities need to speak out like this.
“I’ve had Covid enough in my life I don’t need to do that again. I’m wearing this for health reasons”
More celebrities need to speak out like this.
November 5, 2025 at 9:09 AM
When asked by Stephen Colbert why he was wearing a mask in public, Tom Hanks said..
“I’ve had Covid enough in my life I don’t need to do that again. I’m wearing this for health reasons”
More celebrities need to speak out like this.
“I’ve had Covid enough in my life I don’t need to do that again. I’m wearing this for health reasons”
More celebrities need to speak out like this.
Reposted by Sage
It’s not the best that to a very large extent, disability advocacy is the only kind of civic work disabled people can access.
Altho tbh accessibility is not really my problem. I need treatment to be able to do anything I love. Tough test for the social model of disability.
Altho tbh accessibility is not really my problem. I need treatment to be able to do anything I love. Tough test for the social model of disability.
November 4, 2025 at 2:26 PM
It’s not the best that to a very large extent, disability advocacy is the only kind of civic work disabled people can access.
Altho tbh accessibility is not really my problem. I need treatment to be able to do anything I love. Tough test for the social model of disability.
Altho tbh accessibility is not really my problem. I need treatment to be able to do anything I love. Tough test for the social model of disability.
Reposted by Sage
YES YOU SHOULD VOTE IN LOCAL ELECTIONS TOMORROW EVEN IF MAMDANI IS NOT ON THE BALLOT WHERE YOU LIVE
November 3, 2025 at 9:02 PM
YES YOU SHOULD VOTE IN LOCAL ELECTIONS TOMORROW EVEN IF MAMDANI IS NOT ON THE BALLOT WHERE YOU LIVE
It was ACTIVELY DIFFICULT to get my mom’s PCP to prescribe metformin when she had her second round of acute covid a year ago - even though she was already pre-diabetic!
A year later, with more studies showing a significant benefit, it’s even more disappointing that this is still an issue.
A year later, with more studies showing a significant benefit, it’s even more disappointing that this is still an issue.
The Sick Times: 'Metformin has been shown to reduce the risk of Long COVID. Why isn’t it more widely used?'
Written by Rachel Fairbank
thesicktimes.org/2025/10/28/m...
Written by Rachel Fairbank
thesicktimes.org/2025/10/28/m...
Metformin has been shown to reduce the risk of Long COVID. Why isn’t it more widely used? - The Sick Times
Recent studies add evidence to a prior phase 3 clinical trial, suggesting that taking the diabetes drug during acute COVID-19 reduces the risk of long-term symptoms.
thesicktimes.org
October 28, 2025 at 7:37 PM
It was ACTIVELY DIFFICULT to get my mom’s PCP to prescribe metformin when she had her second round of acute covid a year ago - even though she was already pre-diabetic!
A year later, with more studies showing a significant benefit, it’s even more disappointing that this is still an issue.
A year later, with more studies showing a significant benefit, it’s even more disappointing that this is still an issue.
Reposted by Sage
"I DON'T NEED YOU TO FUCKING REWRITE WHAT I'VE JUST WRITTEN!"
October 28, 2025 at 10:46 AM
"I DON'T NEED YOU TO FUCKING REWRITE WHAT I'VE JUST WRITTEN!"
Reposted by Sage
While the feds continue to play stupid games, SNAP recipients are set to lose food aid for the next month. In the Bay Area, a growing number of restaurants are stepping up to help, and we're maintaining the list. Share with anyone who needs it. www.coyotemedia.org/these-bay-ar...
These Bay Area Restaurants Are Offering Free Food to SNAP Recipients
Amid a government shutdown that will cut off aid for 42 million Americans, local food scene folks plan to pick up the slack.
www.coyotemedia.org
October 27, 2025 at 11:52 PM
While the feds continue to play stupid games, SNAP recipients are set to lose food aid for the next month. In the Bay Area, a growing number of restaurants are stepping up to help, and we're maintaining the list. Share with anyone who needs it. www.coyotemedia.org/these-bay-ar...
Reposted by Sage
I wrote about how RFK Jr is making health worse for millions of Americans. He's slashed research and healthcare, and replaced them with "hAvE yOu TrIeD YoGa?"
Link & free link in thread. There are impeachment/removal proposals in both the House and Senate. Tell your electeds to boot this guy out!
Link & free link in thread. There are impeachment/removal proposals in both the House and Senate. Tell your electeds to boot this guy out!
San Francisco Chronicle: 'RFK Jr. has betrayed millions of Americans like me who suffer from chronic illness'
'Like millions of Americans, I live with a virally triggered chronic illness called myalgic encephalomyelitis...'
By Effie Seiberg
www.sfchronicle.com/opinion/open...
'Like millions of Americans, I live with a virally triggered chronic illness called myalgic encephalomyelitis...'
By Effie Seiberg
www.sfchronicle.com/opinion/open...
RFK Jr. has betrayed millions of Americans like me who suffer from chronic illness
OPINION: “According to research published by the CDC, 3 in 4 Americans have a chronic illness. That’s nearly 200 million people, and Kennedy is helping none of us,” Effie Seiberg writes.
www.sfchronicle.com
October 27, 2025 at 5:52 PM
I wrote about how RFK Jr is making health worse for millions of Americans. He's slashed research and healthcare, and replaced them with "hAvE yOu TrIeD YoGa?"
Link & free link in thread. There are impeachment/removal proposals in both the House and Senate. Tell your electeds to boot this guy out!
Link & free link in thread. There are impeachment/removal proposals in both the House and Senate. Tell your electeds to boot this guy out!
Reposted by Sage
i really resent the continued assertion that there’s so much anger on both sides, as if the causes of the anger are equally legitimate. we’re angry because masked maniacs are violently snatching our family and neighbors off the street, and they’re angry because we’re calling them out for it.
October 25, 2025 at 5:57 PM
i really resent the continued assertion that there’s so much anger on both sides, as if the causes of the anger are equally legitimate. we’re angry because masked maniacs are violently snatching our family and neighbors off the street, and they’re angry because we’re calling them out for it.
Reposted by Sage
Dismantling the Institutional Review Board (IRB), that oversees all human subjects research, is bad. Really bad.
The entire HR department at the CDC is gone. Everyone at the IRB, which makes sure studies are conducted ethically and rigorously, and the ethics office, which oversee conflicts of interest for CDC leaders and advisory committee members, were also let go.
www.theguardian.com/us-news/2025...
www.theguardian.com/us-news/2025...
‘Instability and confusion’ as CDC slashes 1,300 jobs before reinstating half
Trump administration says 700 notices were sent in error, while top CDC officer says ‘they didn’t think through what they were doing’
www.theguardian.com
October 19, 2025 at 4:00 PM
Dismantling the Institutional Review Board (IRB), that oversees all human subjects research, is bad. Really bad.
Reposted by Sage
I think one of the saddest things about being a millennial is remembering a time when technology was advancing in a way that made life better and easier and more exciting instead of actively, intentionally worse
July 9, 2025 at 7:18 PM
I think one of the saddest things about being a millennial is remembering a time when technology was advancing in a way that made life better and easier and more exciting instead of actively, intentionally worse
Reposted by Sage
I think this is a generally good article but there is no discussion at all about prevention or the fact that most kids are getting sick *at school* in the first place.
like yes we need to talk about accommodations & absenteeism, but we also really really need to talk about clean air standards.
like yes we need to talk about accommodations & absenteeism, but we also really really need to talk about clean air standards.
Long Covid Is Real — And It’s Changing an Entire Generation
Hundreds of thousands of kids in America are struggling with an illness that many doctors and schools refuse to recognize.e
Feature: www.rollingstone.com/culture/cult...
Hundreds of thousands of kids in America are struggling with an illness that many doctors and schools refuse to recognize.e
Feature: www.rollingstone.com/culture/cult...
October 17, 2025 at 4:45 PM
I think this is a generally good article but there is no discussion at all about prevention or the fact that most kids are getting sick *at school* in the first place.
like yes we need to talk about accommodations & absenteeism, but we also really really need to talk about clean air standards.
like yes we need to talk about accommodations & absenteeism, but we also really really need to talk about clean air standards.
“We always want more, even as gains are made.”
I’m lucky to have made gains recently in my Long Covid/ME experience. And still - still, I am ruled by my body’s limitations. As long as that’s true, it will never feel like enough.
I’m lucky to have made gains recently in my Long Covid/ME experience. And still - still, I am ruled by my body’s limitations. As long as that’s true, it will never feel like enough.
of suffering and limitations. We always want more, even as gains are made. We are always aware of what we’ve lost. And we generally feel like hot garbage. Yes, even on good days. Degrees of hot garbage.
- Finally, there is NO WAY this is harder on you than it is on us. Not a chance. Don’t go there
- Finally, there is NO WAY this is harder on you than it is on us. Not a chance. Don’t go there
October 16, 2025 at 8:38 PM
“We always want more, even as gains are made.”
I’m lucky to have made gains recently in my Long Covid/ME experience. And still - still, I am ruled by my body’s limitations. As long as that’s true, it will never feel like enough.
I’m lucky to have made gains recently in my Long Covid/ME experience. And still - still, I am ruled by my body’s limitations. As long as that’s true, it will never feel like enough.
Reposted by Sage
I was sick for so long before 90% of my friends noticed. Like a year and a half. Would’ve gone even longer if I hadn’t had to explain my absence from a college reunion. “Uh yeah so I’ve been too sick to leave the house for 18 months…” People were shocked. I was shocked it was so easy to disappear.
If you gave up masking long ago, you can start anytime. “But none of my friends do.” Think back: did some of your friends “just disappear” in 2021 and stop planning hang outs with you?
October 15, 2025 at 7:09 PM
I was sick for so long before 90% of my friends noticed. Like a year and a half. Would’ve gone even longer if I hadn’t had to explain my absence from a college reunion. “Uh yeah so I’ve been too sick to leave the house for 18 months…” People were shocked. I was shocked it was so easy to disappear.
Reposted by Sage
"Medical gaslighting as a service" is not a use case I anticipated! Doctors seem to enjoy that part of the job so much, why would they outsource it to an app?
Pain does not work like this.
Nothing works like this. There's a reason lie detectors are inadmissible bullshit machines.
But even if it did, those thermometers mentioned in the first sentence? They don't work properly on Black skin. Same with pulse oximeters: they don't work on melanin, either.
Nothing works like this. There's a reason lie detectors are inadmissible bullshit machines.
But even if it did, those thermometers mentioned in the first sentence? They don't work properly on Black skin. Same with pulse oximeters: they don't work on melanin, either.
Facial expressions common to all humans! 🙃
October 15, 2025 at 6:13 PM
"Medical gaslighting as a service" is not a use case I anticipated! Doctors seem to enjoy that part of the job so much, why would they outsource it to an app?
Reposted by Sage
The editors of the CDC’s Morbidity and Mortality Weekly Report (MMWR) were apparently fired today.
The precursor to MMWR began in 1878 to address emerging public health threats rapidly.
We are not “great” without it. We are vulnerable to threats from sporadic foodborne illness to bioterrorism.
The precursor to MMWR began in 1878 to address emerging public health threats rapidly.
We are not “great” without it. We are vulnerable to threats from sporadic foodborne illness to bioterrorism.
October 11, 2025 at 4:09 AM
The editors of the CDC’s Morbidity and Mortality Weekly Report (MMWR) were apparently fired today.
The precursor to MMWR began in 1878 to address emerging public health threats rapidly.
We are not “great” without it. We are vulnerable to threats from sporadic foodborne illness to bioterrorism.
The precursor to MMWR began in 1878 to address emerging public health threats rapidly.
We are not “great” without it. We are vulnerable to threats from sporadic foodborne illness to bioterrorism.
Reposted by Sage
NEW: 53 participants involved in the Vyvgart trial for Long COVID are calling on the government to fund research for the drug after they saw significant improvements that the study didn’t capture.
thesicktimes.org/2025/10/10/v...
thesicktimes.org/2025/10/10/v...
Vyvgart brought us back to life, but the Long COVID trial was canceled. We are calling on the NIH and HHS to study the drug. - The Sick Times
We are a group of 53 individuals with Long COVID from across the U.S. In 2023, we joined a Long COVID clinical trial for Vyvgart (efgartigimod), a drug approved by the Food and Drug Administration (FD...
thesicktimes.org
October 10, 2025 at 5:05 PM
NEW: 53 participants involved in the Vyvgart trial for Long COVID are calling on the government to fund research for the drug after they saw significant improvements that the study didn’t capture.
thesicktimes.org/2025/10/10/v...
thesicktimes.org/2025/10/10/v...
Reposted by Sage
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.
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.
September 9, 2025 at 6:49 PM
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.
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.