@ilikebigb00ks.bsky.social
Voracious reader. Mom of 2. Social worker/Therapist. Acerbic wit. Long COVID/MECFS. 😶🌫️🏳️🌈🇵🇸 🏳️⚧️
Reposted
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
🚨 BREAKING: Jackson County Board of Elections votes 3-2 to close the Western Carolina University early voting site despite it being one of the most active polling locations in the county. This is active voter suppression and we will not stand for it.
December 9, 2025 at 5:35 PM
🚨 BREAKING: Jackson County Board of Elections votes 3-2 to close the Western Carolina University early voting site despite it being one of the most active polling locations in the county. This is active voter suppression and we will not stand for it.
Reposted
New Medicaid work requirements will take effect at the end of 2026 - it will FAIL sick people and cut off their care.
Tell HHS to recognize people with #MECFS and #LongCOVID as “medically frail” so our access to Medicaid is protected.
SIGN THE LETTER: actionnetwork.org/petitions/fr...
Tell HHS to recognize people with #MECFS and #LongCOVID as “medically frail” so our access to Medicaid is protected.
SIGN THE LETTER: actionnetwork.org/petitions/fr...
December 8, 2025 at 6:37 PM
New Medicaid work requirements will take effect at the end of 2026 - it will FAIL sick people and cut off their care.
Tell HHS to recognize people with #MECFS and #LongCOVID as “medically frail” so our access to Medicaid is protected.
SIGN THE LETTER: actionnetwork.org/petitions/fr...
Tell HHS to recognize people with #MECFS and #LongCOVID as “medically frail” so our access to Medicaid is protected.
SIGN THE LETTER: actionnetwork.org/petitions/fr...
Reposted
We lost a hero.
He was also a culture critic focusing on leftist politics, film, and more. In his free time, he was an avid reader, a DJ, and an animal rescue center volunteer. In the past few years, he spread awareness about the risks of COVID-19.
#LongCovid #WearAMask #RIP
He was also a culture critic focusing on leftist politics, film, and more. In his free time, he was an avid reader, a DJ, and an animal rescue center volunteer. In the past few years, he spread awareness about the risks of COVID-19.
#LongCovid #WearAMask #RIP
Another enormous loss occurred in the #LongCOVID community last month.
Rest in peace Leslie Lee III 🕊️
thesicktimes.org/2025/12/04/l...
Rest in peace Leslie Lee III 🕊️
thesicktimes.org/2025/12/04/l...
Leslie Lee III, culture critic and Long COVID advocate, dies at 43 - The Sick Times
Leslie Lee III, an educator, critic, and Long COVID advocate, died on November 10. He was 43.
thesicktimes.org
December 4, 2025 at 8:03 PM
We lost a hero.
He was also a culture critic focusing on leftist politics, film, and more. In his free time, he was an avid reader, a DJ, and an animal rescue center volunteer. In the past few years, he spread awareness about the risks of COVID-19.
#LongCovid #WearAMask #RIP
He was also a culture critic focusing on leftist politics, film, and more. In his free time, he was an avid reader, a DJ, and an animal rescue center volunteer. In the past few years, he spread awareness about the risks of COVID-19.
#LongCovid #WearAMask #RIP
Reposted
"I'm out of office because I'm a single mom paying $3,000 for childcare with no paid leave to fall back on."
"I'm OOO in the hospital for preeclampsia but I don't qualify for FMLA because I've been at my job less than 12 months.
www.marieclaire.com/politics/out...
"I'm OOO in the hospital for preeclampsia but I don't qualify for FMLA because I've been at my job less than 12 months.
www.marieclaire.com/politics/out...
Women Are Telling the Truth in Their Out-of-Office Messages. It’s Devastating
A national campaign is delivering a radically honest wake-up call about childcare, burnout, and what it means to live in a country without paid leave.
www.marieclaire.com
November 30, 2025 at 1:22 PM
"I'm out of office because I'm a single mom paying $3,000 for childcare with no paid leave to fall back on."
"I'm OOO in the hospital for preeclampsia but I don't qualify for FMLA because I've been at my job less than 12 months.
www.marieclaire.com/politics/out...
"I'm OOO in the hospital for preeclampsia but I don't qualify for FMLA because I've been at my job less than 12 months.
www.marieclaire.com/politics/out...
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“They’ve already produced a major hit: a study that found a potential biomarker for post-exertional malaise.
The lead author, Rob Wüst, [said] … his work would have come ‘to an almost complete stop without the Patient-Led funding’ because traditional funding sources are so agonizingly slow”
The lead author, Rob Wüst, [said] … his work would have come ‘to an almost complete stop without the Patient-Led funding’ because traditional funding sources are so agonizingly slow”
If you’re not familiar with @patientled.bsky.social’s uniquely successful model, here’s a nice write-up.
“I’ll admit that I was skeptical…Given the complexity of the science, wouldn’t the N.I.H. be better suited to this role than the patients, some of whom are very ill?
“I was wrong.”
#LongCovid
“I’ll admit that I was skeptical…Given the complexity of the science, wouldn’t the N.I.H. be better suited to this role than the patients, some of whom are very ill?
“I was wrong.”
#LongCovid
Opinion | A Great Idea for People With a Terrible Disease: Let’s Find a Cure Ourselves (Published 2024)
www.nytimes.com
December 3, 2025 at 10:30 PM
“They’ve already produced a major hit: a study that found a potential biomarker for post-exertional malaise.
The lead author, Rob Wüst, [said] … his work would have come ‘to an almost complete stop without the Patient-Led funding’ because traditional funding sources are so agonizingly slow”
The lead author, Rob Wüst, [said] … his work would have come ‘to an almost complete stop without the Patient-Led funding’ because traditional funding sources are so agonizingly slow”
Reposted
Breaking: Spain brings masks back.
Mandatory in hospitals, primary care, and long-term care—for patients, visitors, and staff.
Strong recommendation everywhere else.
Public health moving where evidence points.
Note: Really worth upgrading to respirators.
euroweeklynews.com/2025/11/28/s...
Mandatory in hospitals, primary care, and long-term care—for patients, visitors, and staff.
Strong recommendation everywhere else.
Public health moving where evidence points.
Note: Really worth upgrading to respirators.
euroweeklynews.com/2025/11/28/s...
December 2, 2025 at 1:33 PM
Breaking: Spain brings masks back.
Mandatory in hospitals, primary care, and long-term care—for patients, visitors, and staff.
Strong recommendation everywhere else.
Public health moving where evidence points.
Note: Really worth upgrading to respirators.
euroweeklynews.com/2025/11/28/s...
Mandatory in hospitals, primary care, and long-term care—for patients, visitors, and staff.
Strong recommendation everywhere else.
Public health moving where evidence points.
Note: Really worth upgrading to respirators.
euroweeklynews.com/2025/11/28/s...
Reposted
CHRISTMAS GIVEAWAY.
If you’d like to gift a copy of Who Wants Normal? to someone who needs it this Christmas (but can’t afford it), I’m giving away my last author copy I just found. I’ll sign and dedicate it.
RT and I’ll pick an account at random. Ends Wednesday 3rd December 8pm. U.K. only.
If you’d like to gift a copy of Who Wants Normal? to someone who needs it this Christmas (but can’t afford it), I’m giving away my last author copy I just found. I’ll sign and dedicate it.
RT and I’ll pick an account at random. Ends Wednesday 3rd December 8pm. U.K. only.
December 2, 2025 at 11:02 AM
CHRISTMAS GIVEAWAY.
If you’d like to gift a copy of Who Wants Normal? to someone who needs it this Christmas (but can’t afford it), I’m giving away my last author copy I just found. I’ll sign and dedicate it.
RT and I’ll pick an account at random. Ends Wednesday 3rd December 8pm. U.K. only.
If you’d like to gift a copy of Who Wants Normal? to someone who needs it this Christmas (but can’t afford it), I’m giving away my last author copy I just found. I’ll sign and dedicate it.
RT and I’ll pick an account at random. Ends Wednesday 3rd December 8pm. U.K. only.
Reposted
The Sick Times is doing SUCH valuable work. Can you signal boost or donate??
It's #GivingTuesday. At @thesicktimes.org, our end-of-year fundraiser has been lagging behind; we're hoping to raise $10k today to get back on track.
Here are a few recent stories that demonstrate our unique role serving the Long COVID community. the-sick-times.fundjournalism.org/donate/ (1/10)
Here are a few recent stories that demonstrate our unique role serving the Long COVID community. the-sick-times.fundjournalism.org/donate/ (1/10)
December 2, 2025 at 4:57 PM
The Sick Times is doing SUCH valuable work. Can you signal boost or donate??
Can confirm. It's stupid expensive to live with Long Covid, plus i've lost most of my income.
#LongCovid #NEisVoid #ChronicIllness
#LongCovid #NEisVoid #ChronicIllness
'Long COVID patients face more than double the healthcare costs after diagnosis'
'"Long COVID is a debilitating disease for patients, presenting in a myriad of ways, with far-reaching implications for those affected."
www.news-medical.net/news/2025120...
'"Long COVID is a debilitating disease for patients, presenting in a myriad of ways, with far-reaching implications for those affected."
www.news-medical.net/news/2025120...
Long COVID patients face more than double the healthcare costs after diagnosis
People with Long COVID use the health service significantly more than they did before their diagnosis. These patients need to use GP, outpatient, inpatient and emergency department services more than ...
www.news-medical.net
December 2, 2025 at 8:10 PM
Can confirm. It's stupid expensive to live with Long Covid, plus i've lost most of my income.
#LongCovid #NEisVoid #ChronicIllness
#LongCovid #NEisVoid #ChronicIllness
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This morning, we published a detailed feature by @lauralew105.bsky.social examining how upcoming cuts and changes to Medicaid under Trump will harm people with Long COVID. It includes suggestions for how people can push back against these policies. (2/10)
The future of Medicaid is “really scary” for people with Long COVID - The Sick Times
The deep cuts to Medicaid funding in the Trump administration’s spending bill of almost $1 trillion — as well as new requirements making Medicaid more difficult to obtain and maintain — will hit disad...
thesicktimes.org
December 2, 2025 at 4:52 PM
This morning, we published a detailed feature by @lauralew105.bsky.social examining how upcoming cuts and changes to Medicaid under Trump will harm people with Long COVID. It includes suggestions for how people can push back against these policies. (2/10)
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Remember that the real Macy’s Parade action doesn’t begin until the sun goes down
November 27, 2025 at 9:07 PM
Remember that the real Macy’s Parade action doesn’t begin until the sun goes down
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Headline should read: Antivax-led FDA attributes 10 child deaths to COVID shots, offers no proof
November 29, 2025 at 9:02 PM
Headline should read: Antivax-led FDA attributes 10 child deaths to COVID shots, offers no proof
Reposted
🧠 Daily Feed of Brain Damage 🧠
Tell me again that Cövid doesn't effect children 🤬‼️
www.nature.com/articles/s41...
Tell me again that Cövid doesn't effect children 🤬‼️
www.nature.com/articles/s41...
Fatigue in children and young people up to 24 months after infection with SARS-CoV-2 - Scientific Reports
Scientific Reports - Fatigue in children and young people up to 24 months after infection with SARS-CoV-2
www.nature.com
November 29, 2025 at 7:29 PM
🧠 Daily Feed of Brain Damage 🧠
Tell me again that Cövid doesn't effect children 🤬‼️
www.nature.com/articles/s41...
Tell me again that Cövid doesn't effect children 🤬‼️
www.nature.com/articles/s41...
Reposted
“Long COVID has shattered every aspect of my life,” says Ella, who contracted COVID in 2021 at 19 and had to move home. Once active and social, she now spends days in a dark room with “debilitating fatigue,” exercise intolerance, brain fog, nerve pain, breathlessness and many other symptoms.
November 29, 2025 at 6:23 AM
“Long COVID has shattered every aspect of my life,” says Ella, who contracted COVID in 2021 at 19 and had to move home. Once active and social, she now spends days in a dark room with “debilitating fatigue,” exercise intolerance, brain fog, nerve pain, breathlessness and many other symptoms.
Reposted
The policy implications are clear. We need:
✅ Clean Air in schools so kids don't catch #Covid several times a year
✅ To direct JCVI to look again at the costs & benefits of vaccinating kids, including #LongCovid risks
✅ Free vax access
✅ Honest communication of real & serious risks to kids.
✅ Clean Air in schools so kids don't catch #Covid several times a year
✅ To direct JCVI to look again at the costs & benefits of vaccinating kids, including #LongCovid risks
✅ Free vax access
✅ Honest communication of real & serious risks to kids.
New Data Shows COVID-19 Infection Much Worse For Children Than the Vaccine
"The risk following vaccination is substantially lower than the risk following infection".
www.zmescience.com
November 29, 2025 at 8:02 PM
The policy implications are clear. We need:
✅ Clean Air in schools so kids don't catch #Covid several times a year
✅ To direct JCVI to look again at the costs & benefits of vaccinating kids, including #LongCovid risks
✅ Free vax access
✅ Honest communication of real & serious risks to kids.
✅ Clean Air in schools so kids don't catch #Covid several times a year
✅ To direct JCVI to look again at the costs & benefits of vaccinating kids, including #LongCovid risks
✅ Free vax access
✅ Honest communication of real & serious risks to kids.
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Anyone know of orgs that give free covid tests to libraries? Asking for a librarian.
November 29, 2025 at 10:43 PM
Anyone know of orgs that give free covid tests to libraries? Asking for a librarian.
Reposted
The magnitude of the change over time is striking.
www.nbcnews.com/health/healt...
www.nbcnews.com/health/healt...
November 28, 2025 at 3:50 PM
The magnitude of the change over time is striking.
www.nbcnews.com/health/healt...
www.nbcnews.com/health/healt...
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They shelved women's bodies. Fuck women, who cares about them anyway?
Just watch her. And then share. And then tell your friends.
Just watch her. And then share. And then tell your friends.
Hang on, WHAT?!?!? #sabv #science #female #reproductive #research #drugs #insane #humantrials #trump
YouTube video by Hawk's Podcasts / mdg650hawk
youtube.com
November 26, 2025 at 8:15 PM
They shelved women's bodies. Fuck women, who cares about them anyway?
Just watch her. And then share. And then tell your friends.
Just watch her. And then share. And then tell your friends.
Reposted
November 26, 2025 at 2:21 PM
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Big step for people with #mecfs & #LongCovid in Germany: the BMFTR announces a “National Decade on Post-Infectious Diseases” with long-term research funding and a focus on diagnostics & treatments. #mecfsresearch #research
November 14, 2025 at 3:10 PM
Big step for people with #mecfs & #LongCovid in Germany: the BMFTR announces a “National Decade on Post-Infectious Diseases” with long-term research funding and a focus on diagnostics & treatments. #mecfsresearch #research
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"The US government will not be commemorating World AIDS day this year".
Silence = Death
There are 1.1 million people living with HIV in the United States, 40 million globally
Silence = Death
There are 1.1 million people living with HIV in the United States, 40 million globally
November 25, 2025 at 8:09 PM
"The US government will not be commemorating World AIDS day this year".
Silence = Death
There are 1.1 million people living with HIV in the United States, 40 million globally
Silence = Death
There are 1.1 million people living with HIV in the United States, 40 million globally
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100% this. Take care of yourself and your loved ones and #MaskUp.
Otherwise, it's possible that those few weeks of sick time could lead to #longCOVID or #MECFS, the gifts that go on giving, well after the holiays. On and on, with no end in sight.
#disability #healthcare #chronicillness
Otherwise, it's possible that those few weeks of sick time could lead to #longCOVID or #MECFS, the gifts that go on giving, well after the holiays. On and on, with no end in sight.
#disability #healthcare #chronicillness
We always see a surge of infectious disease, including COVID, RSV, etc etc around Thanksgiving and Christmas. Unless you want to gift your fam with a few weeks sick this year, mask up as you travel!
November 24, 2025 at 12:32 AM
100% this. Take care of yourself and your loved ones and #MaskUp.
Otherwise, it's possible that those few weeks of sick time could lead to #longCOVID or #MECFS, the gifts that go on giving, well after the holiays. On and on, with no end in sight.
#disability #healthcare #chronicillness
Otherwise, it's possible that those few weeks of sick time could lead to #longCOVID or #MECFS, the gifts that go on giving, well after the holiays. On and on, with no end in sight.
#disability #healthcare #chronicillness
Reposted
Congress, pay attention. We the People decide where our money goes — not the President. And we are demanding full support for Ukraine, with everything they need to win. Trump does not hold the power of the purse. The American people do. Act accordingly.
November 22, 2025 at 2:21 AM
Congress, pay attention. We the People decide where our money goes — not the President. And we are demanding full support for Ukraine, with everything they need to win. Trump does not hold the power of the purse. The American people do. Act accordingly.