Miranda
@crookedneighbor.bsky.social
Long Covid patient and caregiver writing about homelessness, poverty, and administrative burden in ME/CFS. (she/her)
LongCovidSafety.net
LongCovidSafety.net
Pinned
Today @thesicktimes.org: "Having a doctor who is willing and available to engage with survival admin makes the difference between being able to access necessities and going without, and can be the only lifeline against neglect."
By @crookedneighbor.bsky.social: thesicktimes.org/2025/12/09/d...
By @crookedneighbor.bsky.social: thesicktimes.org/2025/12/09/d...
Doctors who refuse to engage with administrative work are abandoning their poorest and sickest patients - The Sick Times
Having a Long COVID or ME doctor who is willing and available to engage with survival admin makes the difference between being able to access necessities and going without, and can be the only lifelin...
thesicktimes.org
My first piece for @thesicktimes.org!
In response to @brittashoot.com's reporting on LC/ME specialists opting out of insurance in order to “spend more time on patient care rather than administrative work,” I argue that administrative work IS patient care, especially for people living in poverty.
In response to @brittashoot.com's reporting on LC/ME specialists opting out of insurance in order to “spend more time on patient care rather than administrative work,” I argue that administrative work IS patient care, especially for people living in poverty.
Reposted by Miranda
We’re over halfway through our end-of-year fundraiser, and we’re not where we need to be to keep our vital work going. We have three weeks left to hit our goals of $60,000 and 200 monthly supporters.
The #LongCOVID community needs us — we need you! the-sick-times.fundjournalism.org/donate/
The #LongCOVID community needs us — we need you! the-sick-times.fundjournalism.org/donate/
December 12, 2025 at 5:39 PM
We’re over halfway through our end-of-year fundraiser, and we’re not where we need to be to keep our vital work going. We have three weeks left to hit our goals of $60,000 and 200 monthly supporters.
The #LongCOVID community needs us — we need you! the-sick-times.fundjournalism.org/donate/
The #LongCOVID community needs us — we need you! the-sick-times.fundjournalism.org/donate/
I can't stop reading the coverage, and the comments, because I know this is how people will be talking about folks that I love 💔
I knew the Reiner family tragedy would lead people to say some fucked up things about people living with addiction, but it's still hard to see that stuff. If you've lived with an addiction or loved someone who does or has, you know cruel generalizations don't help anyone or anything.
December 19, 2025 at 4:37 AM
I can't stop reading the coverage, and the comments, because I know this is how people will be talking about folks that I love 💔
Reposted by Miranda
The Health Resources and Service Administration (HRSA) has issued a proposal to stop tracking Long COVID at community health centers - making it much more difficult to track trends and identify disparities in access, diagnosis, and treatment in community health.
MEAction comment:
ow.ly/4z1j50XLH4i
MEAction comment:
ow.ly/4z1j50XLH4i
December 18, 2025 at 8:23 PM
The Health Resources and Service Administration (HRSA) has issued a proposal to stop tracking Long COVID at community health centers - making it much more difficult to track trends and identify disparities in access, diagnosis, and treatment in community health.
MEAction comment:
ow.ly/4z1j50XLH4i
MEAction comment:
ow.ly/4z1j50XLH4i
Reposted by Miranda
this is the first winter since 2016 that as a survivor i do not have an ESA dog in my life. i have no family.
my ESA dogs (one passed in 2023, and Esmé 11/30/25) helped me when no human would or could. they helped me survive over a year of homelessness beginning in 2020.
please share. i am alone.
my ESA dogs (one passed in 2023, and Esmé 11/30/25) helped me when no human would or could. they helped me survive over a year of homelessness beginning in 2020.
please share. i am alone.
December 12, 2025 at 11:13 PM
this is the first winter since 2016 that as a survivor i do not have an ESA dog in my life. i have no family.
my ESA dogs (one passed in 2023, and Esmé 11/30/25) helped me when no human would or could. they helped me survive over a year of homelessness beginning in 2020.
please share. i am alone.
my ESA dogs (one passed in 2023, and Esmé 11/30/25) helped me when no human would or could. they helped me survive over a year of homelessness beginning in 2020.
please share. i am alone.
Reposted by Miranda
if the mta sold F/M swap merch they'd be funded for the next decade
December 18, 2025 at 3:50 AM
if the mta sold F/M swap merch they'd be funded for the next decade
I'm screaming
Is the MTA making merch with the F M Swap icon cause they should be
December 18, 2025 at 4:03 AM
I'm screaming
Reposted by Miranda
Oh hey a good annual reminder that I’ve got a Bluesky starter pack full of agents on here. Go follow away.👇🏽
December 16, 2025 at 10:36 PM
Oh hey a good annual reminder that I’ve got a Bluesky starter pack full of agents on here. Go follow away.👇🏽
Well said. Long covid folks, I know we are desperate for any kind of recognition, but please do not accept scraps from this guy who is fundamentally not on our side
this is the second time in a few months that rfk has held an event to pander to people with poorly understood chronic illnesses while taking actions that are harmful to us, the country and the world. it’s not a coincidence.
RFK, Jr.–Backed Lyme Disease Conspiracy Theory May Be Probed under New Bill
www.scientificamerican.com/article/rfk-...
President Donald Trump is expected to sign a defense bill this week that orders an investigation into whether the U.S. military bioengineered Lyme disease
www.scientificamerican.com/article/rfk-...
President Donald Trump is expected to sign a defense bill this week that orders an investigation into whether the U.S. military bioengineered Lyme disease
December 16, 2025 at 8:03 PM
Well said. Long covid folks, I know we are desperate for any kind of recognition, but please do not accept scraps from this guy who is fundamentally not on our side
Well this is deeply alarming
New Jersey is "considering a proposal to require involuntary commitment for any overdose survivors revived by law enforcement."
May "apply to anyone suspected of overdosing in the past 48 hours, even without medical confirmation."
#NewJersey #USA #Drugs #Healthcare #Incarceration #Suicide
May "apply to anyone suspected of overdosing in the past 48 hours, even without medical confirmation."
#NewJersey #USA #Drugs #Healthcare #Incarceration #Suicide
NJ May Expand Civil Commitment to Anyone Accused of Recent Overdose
New Jersey legislators are considering a proposal to require involuntary commitment for any overdose survivors revived by law enforcement.
filtermag.org
December 14, 2025 at 10:44 PM
Well this is deeply alarming
Reposted by Miranda
i can’t give blood for like 5 reasons but if you can, please do.
not only is it lifesaving in trauma situations but medicines can be made from blood, like the one that keeps me from being bedbound half the time
not only is it lifesaving in trauma situations but medicines can be made from blood, like the one that keeps me from being bedbound half the time
And also, if you can't give blood, that's fine! I am not grilling anyone about why they don't donate. If you're anemic or underweight or just have trauma around needles, you don't owe me or anyone explanations. It's just a satisfying low-effort way to help *if you can*. No judgments here.
December 14, 2025 at 1:06 AM
i can’t give blood for like 5 reasons but if you can, please do.
not only is it lifesaving in trauma situations but medicines can be made from blood, like the one that keeps me from being bedbound half the time
not only is it lifesaving in trauma situations but medicines can be made from blood, like the one that keeps me from being bedbound half the time
I didn't know Megan personally, but a caregiver friend of mine was mutuals with her and told me the news. She sounds like someone I would have liked a lot.
There have been so many ME deaths this year, and I have to assume it's like this every year and I just wasn't paying as close of attention. 💔
There have been so many ME deaths this year, and I have to assume it's like this every year and I just wasn't paying as close of attention. 💔
Sadly, ME and Long Covid have taken another bright light.
Megan was creative, spunky, intelligent, kind, and beautiful. In the end, she was barely able to exist because of severe ME and Long Covid.
Please don’t let anyone convince you that viruses are harmless
#RIPMegan🕊️
Megan was creative, spunky, intelligent, kind, and beautiful. In the end, she was barely able to exist because of severe ME and Long Covid.
Please don’t let anyone convince you that viruses are harmless
#RIPMegan🕊️
December 13, 2025 at 5:38 PM
I didn't know Megan personally, but a caregiver friend of mine was mutuals with her and told me the news. She sounds like someone I would have liked a lot.
There have been so many ME deaths this year, and I have to assume it's like this every year and I just wasn't paying as close of attention. 💔
There have been so many ME deaths this year, and I have to assume it's like this every year and I just wasn't paying as close of attention. 💔
Reposted by Miranda
I'm so angry about this. No-one with #LongCovid should be made homeless.
No compensation. More destitute as the years pass. No treatments.
@teamlabouruk.bsky.social @longcovidsos.bsky.social @ashleydaltonmp.bsky.social @joplatt.bsky.social @greensagainstcovid.bsky.social
bsky.app/profile/ston...
No compensation. More destitute as the years pass. No treatments.
@teamlabouruk.bsky.social @longcovidsos.bsky.social @ashleydaltonmp.bsky.social @joplatt.bsky.social @greensagainstcovid.bsky.social
bsky.app/profile/ston...
Threatened with repossession and homelessness because of non-payment of mortgage on my tiny studio flat.
Before 2020 I hadn't missed a single payment. But I built up debt when I got Alpha-wave #covid and couldn't work. My best mate died same time. I wonder how many of us there are out there.
Before 2020 I hadn't missed a single payment. But I built up debt when I got Alpha-wave #covid and couldn't work. My best mate died same time. I wonder how many of us there are out there.
December 13, 2025 at 9:56 AM
I'm so angry about this. No-one with #LongCovid should be made homeless.
No compensation. More destitute as the years pass. No treatments.
@teamlabouruk.bsky.social @longcovidsos.bsky.social @ashleydaltonmp.bsky.social @joplatt.bsky.social @greensagainstcovid.bsky.social
bsky.app/profile/ston...
No compensation. More destitute as the years pass. No treatments.
@teamlabouruk.bsky.social @longcovidsos.bsky.social @ashleydaltonmp.bsky.social @joplatt.bsky.social @greensagainstcovid.bsky.social
bsky.app/profile/ston...
Reposted by Miranda
California folks with ME/CFS, your input is needed!
If you have ME/CFS (even without a formal diagnosis) & live in California, I would love if you could fill out & share this survey with your friends. I am trying to prepare for a few legislative meetings I have in January w/ some old colleagues.
Responses are anonymous!
cryptpad.fr/form/#/2/for...
Responses are anonymous!
cryptpad.fr/form/#/2/for...
Encrypted Form
CryptPad: end-to-end encrypted collaboration suite
cryptpad.fr
December 12, 2025 at 9:57 PM
California folks with ME/CFS, your input is needed!
Reposted by Miranda
I'm giving a talk next week and you're invited!
✨Improving Quality of Life in ME/CFS and Infection-Associated Chronic Conditions✨
The talk is donate-as-you're-able, and 20% will support #MEAction.
You can sign up to attend here: us06web.zoom.us/meeting/regi...
✨Improving Quality of Life in ME/CFS and Infection-Associated Chronic Conditions✨
The talk is donate-as-you're-able, and 20% will support #MEAction.
You can sign up to attend here: us06web.zoom.us/meeting/regi...
December 12, 2025 at 6:23 PM
I'm giving a talk next week and you're invited!
✨Improving Quality of Life in ME/CFS and Infection-Associated Chronic Conditions✨
The talk is donate-as-you're-able, and 20% will support #MEAction.
You can sign up to attend here: us06web.zoom.us/meeting/regi...
✨Improving Quality of Life in ME/CFS and Infection-Associated Chronic Conditions✨
The talk is donate-as-you're-able, and 20% will support #MEAction.
You can sign up to attend here: us06web.zoom.us/meeting/regi...
I don't know anyone who has this much experience *and* is still well enough to work, lol. But a very cool job going if you know anyone who should apply! www.typeinvestigations.org/about/jobs/
Jobs at Type Investigations
www.typeinvestigations.org
December 12, 2025 at 5:47 PM
I don't know anyone who has this much experience *and* is still well enough to work, lol. But a very cool job going if you know anyone who should apply! www.typeinvestigations.org/about/jobs/
Reposted by Miranda
This is really a must-read account of the dire situation of so many people who are severely ill with severe ME and Long Covid.
The headline focuses on doctors, but the text makes clear it’s incumbent on all of us to put a stop to this abandonment.
The headline focuses on doctors, but the text makes clear it’s incumbent on all of us to put a stop to this abandonment.
The Sick Times: 'Doctors who refuse to engage with administrative work are abandoning their poorest and sickest patients'
Written by Miranda DeNovo
'For more than a year, I’ve been helping take care of multiple community members with very severe Long COVID & ME..'
thesicktimes.org/2025/12/09/d...
Written by Miranda DeNovo
'For more than a year, I’ve been helping take care of multiple community members with very severe Long COVID & ME..'
thesicktimes.org/2025/12/09/d...
Doctors who refuse to engage with administrative work are abandoning their poorest and sickest patients - The Sick Times
Having a Long COVID or ME doctor who is willing and available to engage with survival admin makes the difference between being able to access necessities and going without, and can be the only lifelin...
thesicktimes.org
December 9, 2025 at 10:52 PM
This is really a must-read account of the dire situation of so many people who are severely ill with severe ME and Long Covid.
The headline focuses on doctors, but the text makes clear it’s incumbent on all of us to put a stop to this abandonment.
The headline focuses on doctors, but the text makes clear it’s incumbent on all of us to put a stop to this abandonment.
Reposted by Miranda
Read this from brilliant comrade @crookedneighbor.bsky.social and then immediately logged into mychart to handle provider messages <3
Today @thesicktimes.org: "Having a doctor who is willing and available to engage with survival admin makes the difference between being able to access necessities and going without, and can be the only lifeline against neglect."
By @crookedneighbor.bsky.social: thesicktimes.org/2025/12/09/d...
By @crookedneighbor.bsky.social: thesicktimes.org/2025/12/09/d...
Doctors who refuse to engage with administrative work are abandoning their poorest and sickest patients - The Sick Times
Having a Long COVID or ME doctor who is willing and available to engage with survival admin makes the difference between being able to access necessities and going without, and can be the only lifelin...
thesicktimes.org
December 9, 2025 at 10:44 PM
Read this from brilliant comrade @crookedneighbor.bsky.social and then immediately logged into mychart to handle provider messages <3
My first piece for @thesicktimes.org!
In response to @brittashoot.com's reporting on LC/ME specialists opting out of insurance in order to “spend more time on patient care rather than administrative work,” I argue that administrative work IS patient care, especially for people living in poverty.
In response to @brittashoot.com's reporting on LC/ME specialists opting out of insurance in order to “spend more time on patient care rather than administrative work,” I argue that administrative work IS patient care, especially for people living in poverty.
Today @thesicktimes.org: "Having a doctor who is willing and available to engage with survival admin makes the difference between being able to access necessities and going without, and can be the only lifeline against neglect."
By @crookedneighbor.bsky.social: thesicktimes.org/2025/12/09/d...
By @crookedneighbor.bsky.social: thesicktimes.org/2025/12/09/d...
Doctors who refuse to engage with administrative work are abandoning their poorest and sickest patients - The Sick Times
Having a Long COVID or ME doctor who is willing and available to engage with survival admin makes the difference between being able to access necessities and going without, and can be the only lifelin...
thesicktimes.org
December 10, 2025 at 6:35 PM
My first piece for @thesicktimes.org!
In response to @brittashoot.com's reporting on LC/ME specialists opting out of insurance in order to “spend more time on patient care rather than administrative work,” I argue that administrative work IS patient care, especially for people living in poverty.
In response to @brittashoot.com's reporting on LC/ME specialists opting out of insurance in order to “spend more time on patient care rather than administrative work,” I argue that administrative work IS patient care, especially for people living in poverty.
Sharing from a long-time organizing comrade. Their friend is housing insecure and trying to make it back to NYC within the next month for stable housing. Please support if you can!
December 8, 2025 at 11:24 PM
Sharing from a long-time organizing comrade. Their friend is housing insecure and trying to make it back to NYC within the next month for stable housing. Please support if you can!
Reposted by Miranda
If every one of my 3000+ followers could give Désirée $2, she'd exceed her goal for getting safe housing. I know that everyone won't see this, but if you do see it and have $5 or a bit more to spare, please consider it.
gofund.me/cfd069ce3
gofund.me/cfd069ce3
Donate to Help First Gen Immigrant Get Documents, Survive Homelessness, organized by Sam Dylan Finch
Dear community,
The story of what my friend has endured i… Sam Dylan Finch needs your support for Help First Gen Immigrant Get Documents, Survive Homelessness
gofund.me
November 1, 2025 at 4:42 AM
If every one of my 3000+ followers could give Désirée $2, she'd exceed her goal for getting safe housing. I know that everyone won't see this, but if you do see it and have $5 or a bit more to spare, please consider it.
gofund.me/cfd069ce3
gofund.me/cfd069ce3
I desperately want the shingles vax even though I'm "too young." Had chicken pox at 14 (unvaccinated--it was so rare at the time that the doctor called all their staff over to see what it looked like). Got a staph infection because of the open wounds. Staph infection gave me permanent nerve damage.
All over my FB people talking about their bad experiences with shingles vax and dissuading each other from getting it! We need to give people real info on how to mitigate the symtoms caused by vaccines because vaccines are always better than meeting a virus unprepared. Yet drs aren't coaching ppl
December 8, 2025 at 7:04 PM
I desperately want the shingles vax even though I'm "too young." Had chicken pox at 14 (unvaccinated--it was so rare at the time that the doctor called all their staff over to see what it looked like). Got a staph infection because of the open wounds. Staph infection gave me permanent nerve damage.
Reposted by Miranda
I'll be writing about #LongCOVID trials in kids for
@thesicktimes.org.
With the protocol for the LDN trial now available for public comment. I wanted to hear from parents and researchers about their thoughts on the protocol. DM me to get in touch.
recovercovid.org/news/recover...
@thesicktimes.org.
With the protocol for the LDN trial now available for public comment. I wanted to hear from parents and researchers about their thoughts on the protocol. DM me to get in touch.
recovercovid.org/news/recover...
RECOVER: Researching COVID to Enhance Recovery
The long-term effects of COVID are real. Join the NIH in the search for answers.
recovercovid.org
December 5, 2025 at 2:16 PM
I'll be writing about #LongCOVID trials in kids for
@thesicktimes.org.
With the protocol for the LDN trial now available for public comment. I wanted to hear from parents and researchers about their thoughts on the protocol. DM me to get in touch.
recovercovid.org/news/recover...
@thesicktimes.org.
With the protocol for the LDN trial now available for public comment. I wanted to hear from parents and researchers about their thoughts on the protocol. DM me to get in touch.
recovercovid.org/news/recover...
Reposted by Miranda
The white & classist oppression of many "COVID-cautious" people also helped push a mask bloc cofounder into houselessness. It's been almost a year & things haven't improved.
They could use financial support ($ app: $PoetJaleane) if you're willing to share.
bsky.app/profile/wort...
They could use financial support ($ app: $PoetJaleane) if you're willing to share.
bsky.app/profile/wort...
The Black, trans, disabled cofounder of a mask bloc is houseless & isolated. They've been sleeping in freezing cold for over a week & are running out of options.
Below is a link to a non-amazon wishlist that also has methods for donating $. Are you willing to share/boost?
tinyurl.com/supportDiJ
Below is a link to a non-amazon wishlist that also has methods for donating $. Are you willing to share/boost?
tinyurl.com/supportDiJ
DiJ they/them's List - Support DiJ in Being on Giftster
Shop DiJ they/them's public wish list registry, named Support DiJ in Being, last updated December 5, 2025 on Giftster
tinyurl.com
December 8, 2025 at 1:54 AM
The white & classist oppression of many "COVID-cautious" people also helped push a mask bloc cofounder into houselessness. It's been almost a year & things haven't improved.
They could use financial support ($ app: $PoetJaleane) if you're willing to share.
bsky.app/profile/wort...
They could use financial support ($ app: $PoetJaleane) if you're willing to share.
bsky.app/profile/wort...
Reposted by Miranda
As people support me & @lizzietask.bsky.social w mutual aid — I can’t help think people haven’t been as generous w another survivor w a now over-the-rainbow bridge pup. The obvious difference is I’m white — naming that
As someone inside because of mutual aid, I’m asking you to share (the post & $)
As someone inside because of mutual aid, I’m asking you to share (the post & $)
i'll be on the streets tmrw.
it's snowing outside.
my ESA dog & only family died a few days ago.
i can't live in a car sans title (takes at least 8 wks to arrive).
i have no delusions that i'll be able to raise enough to pay for an indoor stay thru Dec by 12/5.
but if you can help, i'd be thankful.
it's snowing outside.
my ESA dog & only family died a few days ago.
i can't live in a car sans title (takes at least 8 wks to arrive).
i have no delusions that i'll be able to raise enough to pay for an indoor stay thru Dec by 12/5.
but if you can help, i'd be thankful.
December 7, 2025 at 9:17 AM
As people support me & @lizzietask.bsky.social w mutual aid — I can’t help think people haven’t been as generous w another survivor w a now over-the-rainbow bridge pup. The obvious difference is I’m white — naming that
As someone inside because of mutual aid, I’m asking you to share (the post & $)
As someone inside because of mutual aid, I’m asking you to share (the post & $)
Reposted by Miranda
This man did a photo opp of himself destroying homeless people's last possessions.
California Governor Gavin Newsom said on Thursday that the Democratic Party needed to be “more culturally normal” and “less judgmental.”
December 7, 2025 at 1:36 AM
This man did a photo opp of himself destroying homeless people's last possessions.