Ginger Billie
@gingerbillie.bsky.social
Red head.
Long Covid and ME/CFS since 2022.
Here for learning and talking about Long Covid.
Software engineer.
Long Covid and ME/CFS since 2022.
Here for learning and talking about Long Covid.
Software engineer.
Reposted by Ginger Billie
Nature: 'Long-COVID research just got a big funding boost: will it find new treatments?'
'The German government has committed half a billion euros for research on long COVID and other post-infection syndromes.'
By Michael Marshall
www.nature.com/articles/d41...
'The German government has committed half a billion euros for research on long COVID and other post-infection syndromes.'
By Michael Marshall
www.nature.com/articles/d41...
Long-COVID research just got a big funding boost: will it find new treatments?
The German government has committed half a billion euros for research on long COVID and other post-infection syndromes.
www.nature.com
December 8, 2025 at 4:35 PM
Nature: 'Long-COVID research just got a big funding boost: will it find new treatments?'
'The German government has committed half a billion euros for research on long COVID and other post-infection syndromes.'
By Michael Marshall
www.nature.com/articles/d41...
'The German government has committed half a billion euros for research on long COVID and other post-infection syndromes.'
By Michael Marshall
www.nature.com/articles/d41...
Reposted by Ginger Billie
For five years I've lived with long COVID and watched people push for answers without the tools they deserved.
So I'm building TrialPilot, a way to take part in real studies from home.
Any support or sharing would be deeply appreciated. ❤️
gofund.me/3f6830e8f
So I'm building TrialPilot, a way to take part in real studies from home.
Any support or sharing would be deeply appreciated. ❤️
gofund.me/3f6830e8f
Donate to Patients Deserve Faster Answers - Help Build TrialPilot, organized by Jon Douglas
Hi, I’m Jon Douglas (@atranscendedman ).
I’ve lived with long … Jon Douglas needs your support for Patients Deserve Faster Answers - Help Build TrialPilot
gofund.me
December 8, 2025 at 4:55 PM
For five years I've lived with long COVID and watched people push for answers without the tools they deserved.
So I'm building TrialPilot, a way to take part in real studies from home.
Any support or sharing would be deeply appreciated. ❤️
gofund.me/3f6830e8f
So I'm building TrialPilot, a way to take part in real studies from home.
Any support or sharing would be deeply appreciated. ❤️
gofund.me/3f6830e8f
Reposted by Ginger Billie
KQED: 'After Alice Wong’s Death, Her Friends Vow to Keep Fighting for Disability Justice'
"..McCone said, adding that folks living with long COVID need to keep sharing their stories — now more than ever"
www.kqed.org/news/1206519...
"..McCone said, adding that folks living with long COVID need to keep sharing their stories — now more than ever"
www.kqed.org/news/1206519...
After Alice Wong’s Death, Her Friends Vow to Keep Fighting for Disability Justice | KQED
Friends, activists and policy experts reflect on Alice Wong’s legacy as looming Medicaid cuts threaten critical services for disabled people in California and nationwide.
www.kqed.org
December 8, 2025 at 6:01 PM
KQED: 'After Alice Wong’s Death, Her Friends Vow to Keep Fighting for Disability Justice'
"..McCone said, adding that folks living with long COVID need to keep sharing their stories — now more than ever"
www.kqed.org/news/1206519...
"..McCone said, adding that folks living with long COVID need to keep sharing their stories — now more than ever"
www.kqed.org/news/1206519...
Reposted by Ginger Billie
Reposted by Ginger Billie
Are you a #pwME / #pwLC / #NEISvoid, desire to be involved in advocacy or community in some capacity, but unsure how to get started or where to go?
Please feel free to reach out / DM me anytime if applicable [asterisk being for US residents]
#MillionsMissing
#MyalgicEncephalomyelitis
#LongCOVID
Please feel free to reach out / DM me anytime if applicable [asterisk being for US residents]
#MillionsMissing
#MyalgicEncephalomyelitis
#LongCOVID
December 7, 2025 at 5:39 PM
Are you a #pwME / #pwLC / #NEISvoid, desire to be involved in advocacy or community in some capacity, but unsure how to get started or where to go?
Please feel free to reach out / DM me anytime if applicable [asterisk being for US residents]
#MillionsMissing
#MyalgicEncephalomyelitis
#LongCOVID
Please feel free to reach out / DM me anytime if applicable [asterisk being for US residents]
#MillionsMissing
#MyalgicEncephalomyelitis
#LongCOVID
My legs, feet, hands and arms all shake shake. I have it on video.
No neurologist seems to give a flying fruit cake.
No neurologist seems to give a flying fruit cake.
Université Côte d’Azur studied 30 people with post-COVID olfactory loss and found they wrote with less pressure, speed, and smoothness than healthy peers.
These fine motor changes may mimic early signs of Alzheimer’s.
www.sciencedirect.com/science/arti...
These fine motor changes may mimic early signs of Alzheimer’s.
www.sciencedirect.com/science/arti...
Kinematic handwriting impairments in olfactory dysfunction-related post-acute covid syndrome: short and long-term neurophysiological considerations
Post-Acute COVID-19 Syndrome (PACS) frequently includes persistent olfactory dysfunction (OD) and may share neurocognitive features with Alzheimer’s d…
www.sciencedirect.com
December 7, 2025 at 9:05 PM
My legs, feet, hands and arms all shake shake. I have it on video.
No neurologist seems to give a flying fruit cake.
No neurologist seems to give a flying fruit cake.
Yesterdays IV saline has brought some respite to the amplitude and frequency of leg cramps, muscle stiffness and twitching. 🦵
A very welcome side effect.
A very welcome side effect.
December 7, 2025 at 8:59 PM
Yesterdays IV saline has brought some respite to the amplitude and frequency of leg cramps, muscle stiffness and twitching. 🦵
A very welcome side effect.
A very welcome side effect.
Auditory hallucinations and Long Covid:
Mine happen at night, usually right when I’m about to wake up from an MCAS wake up (every 15 min -1 hour for me). It’s not always, but it’s right after that moment that I transition from lucid dream to wake.
However, I did have one in the middle of the day
Mine happen at night, usually right when I’m about to wake up from an MCAS wake up (every 15 min -1 hour for me). It’s not always, but it’s right after that moment that I transition from lucid dream to wake.
However, I did have one in the middle of the day
December 7, 2025 at 12:46 AM
Auditory hallucinations and Long Covid:
Mine happen at night, usually right when I’m about to wake up from an MCAS wake up (every 15 min -1 hour for me). It’s not always, but it’s right after that moment that I transition from lucid dream to wake.
However, I did have one in the middle of the day
Mine happen at night, usually right when I’m about to wake up from an MCAS wake up (every 15 min -1 hour for me). It’s not always, but it’s right after that moment that I transition from lucid dream to wake.
However, I did have one in the middle of the day
OMG I FREAKING LOVE IV SALINE.
I get my brain back for a few hours.
It’s like I’m walking through a clouded mist when I need to find words and then the sky opens and the sun shines brightly and can run find and find words quickly.
Sometimes its only hours, sometimes days but HOLY MOLY ITS NICE!
I get my brain back for a few hours.
It’s like I’m walking through a clouded mist when I need to find words and then the sky opens and the sun shines brightly and can run find and find words quickly.
Sometimes its only hours, sometimes days but HOLY MOLY ITS NICE!
December 7, 2025 at 12:38 AM
OMG I FREAKING LOVE IV SALINE.
I get my brain back for a few hours.
It’s like I’m walking through a clouded mist when I need to find words and then the sky opens and the sun shines brightly and can run find and find words quickly.
Sometimes its only hours, sometimes days but HOLY MOLY ITS NICE!
I get my brain back for a few hours.
It’s like I’m walking through a clouded mist when I need to find words and then the sky opens and the sun shines brightly and can run find and find words quickly.
Sometimes its only hours, sometimes days but HOLY MOLY ITS NICE!
@imanibarbarin.bsky.social just posted a video about why disabled adults need other disabled adult friends.
This is why I share my experience with Long Covid/MECFS and how much I appreciate when others candidly do the same.
We are stronger together.
www.instagram.com/reel/DR7rQHP...
This is why I share my experience with Long Covid/MECFS and how much I appreciate when others candidly do the same.
We are stronger together.
www.instagram.com/reel/DR7rQHP...
Login • Instagram
Welcome back to Instagram. Sign in to check out what your friends, family & interests have been capturing & sharing around the world.
www.instagram.com
December 7, 2025 at 12:09 AM
@imanibarbarin.bsky.social just posted a video about why disabled adults need other disabled adult friends.
This is why I share my experience with Long Covid/MECFS and how much I appreciate when others candidly do the same.
We are stronger together.
www.instagram.com/reel/DR7rQHP...
This is why I share my experience with Long Covid/MECFS and how much I appreciate when others candidly do the same.
We are stronger together.
www.instagram.com/reel/DR7rQHP...
I emailed as well.
And a patient union - yes, please!!🙏🏻
And a patient union - yes, please!!🙏🏻
@chromatowski.bsky.social has suggested a patient union for things like this. In the meantime we can spread the word & protect each other. Trials like these can cause real harm to participants but they also prop up an ideology that should have been put to rest long ago. Let’s not feed the zombies! 🧟
December 6, 2025 at 10:56 PM
I emailed as well.
And a patient union - yes, please!!🙏🏻
And a patient union - yes, please!!🙏🏻
Reposted by Ginger Billie
We just got published! 🥳
"Brainstem dysfunction as a potential etiology of #MECFS and #LongCovid: A mechanical basis” by Jeff Wood, @thosvarley.bsky.social @hiimjakekthx.bsky.social @artasemita.bsky.social @tessfalor.bsky.social @kaufmanmd.bsky.social
www.sciencedirect.com/science/arti...
1/6 🧵
"Brainstem dysfunction as a potential etiology of #MECFS and #LongCovid: A mechanical basis” by Jeff Wood, @thosvarley.bsky.social @hiimjakekthx.bsky.social @artasemita.bsky.social @tessfalor.bsky.social @kaufmanmd.bsky.social
www.sciencedirect.com/science/arti...
1/6 🧵
Brainstem dysfunction as a potential etiology of ME/CFS and long COVID: A mechanical basis
The underlying mechanism of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) remains poorly understood. Given the dramatic increase in case…
www.sciencedirect.com
December 6, 2025 at 10:40 PM
We just got published! 🥳
"Brainstem dysfunction as a potential etiology of #MECFS and #LongCovid: A mechanical basis” by Jeff Wood, @thosvarley.bsky.social @hiimjakekthx.bsky.social @artasemita.bsky.social @tessfalor.bsky.social @kaufmanmd.bsky.social
www.sciencedirect.com/science/arti...
1/6 🧵
"Brainstem dysfunction as a potential etiology of #MECFS and #LongCovid: A mechanical basis” by Jeff Wood, @thosvarley.bsky.social @hiimjakekthx.bsky.social @artasemita.bsky.social @tessfalor.bsky.social @kaufmanmd.bsky.social
www.sciencedirect.com/science/arti...
1/6 🧵
Reposted by Ginger Billie
Seems fine, mild even?
December 6, 2025 at 10:40 PM
Seems fine, mild even?
With treatments I feel like I’ve made all the wrong choices this year.
Nose PRP - drive to Stanford lowered baseline
Statin - ended up in ER, lowered baseline
Maraviroc - 1.5 months of extreme anxiety - lowered baseline
I don’t have much more baseline to give. Now, only focus is rest.
Nose PRP - drive to Stanford lowered baseline
Statin - ended up in ER, lowered baseline
Maraviroc - 1.5 months of extreme anxiety - lowered baseline
I don’t have much more baseline to give. Now, only focus is rest.
December 6, 2025 at 2:16 AM
With treatments I feel like I’ve made all the wrong choices this year.
Nose PRP - drive to Stanford lowered baseline
Statin - ended up in ER, lowered baseline
Maraviroc - 1.5 months of extreme anxiety - lowered baseline
I don’t have much more baseline to give. Now, only focus is rest.
Nose PRP - drive to Stanford lowered baseline
Statin - ended up in ER, lowered baseline
Maraviroc - 1.5 months of extreme anxiety - lowered baseline
I don’t have much more baseline to give. Now, only focus is rest.
Reposted by Ginger Billie
“Instead of telling patients ‘I don’t know what’s wrong,’ we should be saying, ‘This meets the criteria for Long Covid.’”
Although the info isn’t groundbreaking, hope looks like the AAMA educating medical assistants on what Long Covid is.
Plus offering CEUs.
www.aama-ntl.org/docs/default...
Although the info isn’t groundbreaking, hope looks like the AAMA educating medical assistants on what Long Covid is.
Plus offering CEUs.
www.aama-ntl.org/docs/default...
December 6, 2025 at 1:09 AM
“Instead of telling patients ‘I don’t know what’s wrong,’ we should be saying, ‘This meets the criteria for Long Covid.’”
Although the info isn’t groundbreaking, hope looks like the AAMA educating medical assistants on what Long Covid is.
Plus offering CEUs.
www.aama-ntl.org/docs/default...
Although the info isn’t groundbreaking, hope looks like the AAMA educating medical assistants on what Long Covid is.
Plus offering CEUs.
www.aama-ntl.org/docs/default...
Reposted by Ginger Billie
"You seem fine to me."
Thanks. It's called acting.
Thanks. It's called acting.
December 5, 2025 at 12:31 PM
"You seem fine to me."
Thanks. It's called acting.
Thanks. It's called acting.
Has anyone had luck with any HRT to alleviate some long covid symptoms?
Are there any papers on this?
Are there any papers on this?
December 5, 2025 at 8:34 PM
Has anyone had luck with any HRT to alleviate some long covid symptoms?
Are there any papers on this?
Are there any papers on this?
Reposted by Ginger Billie
Grateful to these folks (headed up by patient researchers!) for getting the #MESpine / mechanical basis hypothesis for ME into the scientific literature 🙏 I’m currently pursuing CCI treatment & hoping it will help alleviate my ME
www.sciencedirect.com/science/arti...
www.sciencedirect.com/science/arti...
Brainstem dysfunction as a potential etiology of ME/CFS and long COVID: A mechanical basis
The underlying mechanism of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) remains poorly understood. Given the dramatic increase in case…
www.sciencedirect.com
December 5, 2025 at 6:20 PM
Grateful to these folks (headed up by patient researchers!) for getting the #MESpine / mechanical basis hypothesis for ME into the scientific literature 🙏 I’m currently pursuing CCI treatment & hoping it will help alleviate my ME
www.sciencedirect.com/science/arti...
www.sciencedirect.com/science/arti...
Heat intolerance from dysautonomia means it’s 40 degrees out, yet I have every window open, I’m in a shirt and I’m still sweating 🥵
December 5, 2025 at 7:25 PM
Heat intolerance from dysautonomia means it’s 40 degrees out, yet I have every window open, I’m in a shirt and I’m still sweating 🥵
No sleep at all last night.
Stuck in wired phase.
Took a lorazepam (I only do this when I’m desperate bc I feel awful as it wears off) and slept for 1.5 hours.
Felt a bit better just from that.
Did I mention how much I hate Long Covid?
Stuck in wired phase.
Took a lorazepam (I only do this when I’m desperate bc I feel awful as it wears off) and slept for 1.5 hours.
Felt a bit better just from that.
Did I mention how much I hate Long Covid?
December 5, 2025 at 7:24 PM
No sleep at all last night.
Stuck in wired phase.
Took a lorazepam (I only do this when I’m desperate bc I feel awful as it wears off) and slept for 1.5 hours.
Felt a bit better just from that.
Did I mention how much I hate Long Covid?
Stuck in wired phase.
Took a lorazepam (I only do this when I’m desperate bc I feel awful as it wears off) and slept for 1.5 hours.
Felt a bit better just from that.
Did I mention how much I hate Long Covid?
Reposted by Ginger Billie
Yale scientists reviewed 100 years of records and found that Long COVID is part of a larger pattern.
Viruses like polio, SARS, and EBV have long caused lasting illness in some people, often through immune dysfunction
www.cell.com/trends/immun...
Viruses like polio, SARS, and EBV have long caused lasting illness in some people, often through immune dysfunction
www.cell.com/trends/immun...
The lingering shadow of epidemics: post-acute sequelae across history
The SARS-CoV-2 pandemic has drawn global attention to post-acute infection syndromes
(PAIS), with millions affected by post-acute sequelae of COVID-19 (PASC, or Long COVID).
While Long COVID is newly ...
www.cell.com
December 4, 2025 at 4:07 PM
Yale scientists reviewed 100 years of records and found that Long COVID is part of a larger pattern.
Viruses like polio, SARS, and EBV have long caused lasting illness in some people, often through immune dysfunction
www.cell.com/trends/immun...
Viruses like polio, SARS, and EBV have long caused lasting illness in some people, often through immune dysfunction
www.cell.com/trends/immun...
This is a creative idea that I think could be incredibly cathartic.
Writing letters to loved ones who’ve passed:
www.postalserviceforthedead.com
Writing letters to loved ones who’ve passed:
www.postalserviceforthedead.com
Postal Service for the Dead
www.postalserviceforthedead.com
December 5, 2025 at 2:19 AM
This is a creative idea that I think could be incredibly cathartic.
Writing letters to loved ones who’ve passed:
www.postalserviceforthedead.com
Writing letters to loved ones who’ve passed:
www.postalserviceforthedead.com
I was diagnosed with COPD two years into my long covid journey.
Both the pulmonologist and other docs have said, “ArE YoU SuRe YoU’vE NeVer SmOkED?”
But I keep seeing all these damn papers on lung inflammation and COPD post covid.
Like are ya’all not keeping up with the literature? 🤨
Both the pulmonologist and other docs have said, “ArE YoU SuRe YoU’vE NeVer SmOkED?”
But I keep seeing all these damn papers on lung inflammation and COPD post covid.
Like are ya’all not keeping up with the literature? 🤨
December 5, 2025 at 2:08 AM
I was diagnosed with COPD two years into my long covid journey.
Both the pulmonologist and other docs have said, “ArE YoU SuRe YoU’vE NeVer SmOkED?”
But I keep seeing all these damn papers on lung inflammation and COPD post covid.
Like are ya’all not keeping up with the literature? 🤨
Both the pulmonologist and other docs have said, “ArE YoU SuRe YoU’vE NeVer SmOkED?”
But I keep seeing all these damn papers on lung inflammation and COPD post covid.
Like are ya’all not keeping up with the literature? 🤨
THIS!
Nothing prepares you for the "goes on walks for mental health" to "short walks make my brain fogy" chronic illness pipeline
December 5, 2025 at 2:05 AM
THIS!
Reposted by Ginger Billie
“Long COVID is real. It's wrecking lives.”
Continue to share your stories of how Long COVID wrecked your life to keep COVID in the forefront of people’s minds and hopefully stop others from suffering the same fate.
My story: www.sueponcin.com
Continue to share your stories of how Long COVID wrecked your life to keep COVID in the forefront of people’s minds and hopefully stop others from suffering the same fate.
My story: www.sueponcin.com
“I haven’t thought about COVID in a long time.”
For a lot of people, that’s the whole story: if they bounced back, it feels like the crisis is over. But for those living with Long COVID, life never went back to normal, and that gap between realities is its own kind of wound.
For a lot of people, that’s the whole story: if they bounced back, it feels like the crisis is over. But for those living with Long COVID, life never went back to normal, and that gap between realities is its own kind of wound.
![Visual: Black background; a white 3M N95 mask with yellow straps appears at the lower left.
Text:
whn.global (top left) • whn.global/long-covid-my-brother-in-law (top right)
For people living with Long COVID, that gap is brutal. They’re “watching people [they] love act like none of it matters, while [their] life is barely functioning.”
Brasure links this to “identity-protective cognition”: we believe what keeps us in good standing with our community. Doctors and friends “folded” not because they don’t care, but because they’re tired, want normal, and are protecting their place in the tribe.
But, as he writes, “reality doesn’t care about tribes.”
Footer: The World Health Network is a network devoted to global compassion—working together to inspire collective action through science for a safer, healthier world.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:jj3szqwfglmbzrzuj7m6rhhz/bafkreiek3qmplnwpzvhes3uceqrteac563y7xrkbsg7y5a5rhtr2axmldq@jpeg)
December 5, 2025 at 12:41 AM
“Long COVID is real. It's wrecking lives.”
Continue to share your stories of how Long COVID wrecked your life to keep COVID in the forefront of people’s minds and hopefully stop others from suffering the same fate.
My story: www.sueponcin.com
Continue to share your stories of how Long COVID wrecked your life to keep COVID in the forefront of people’s minds and hopefully stop others from suffering the same fate.
My story: www.sueponcin.com