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
Health Rising: “A Fibromyalgia Autoimmune Subset Rears Its Head”
“Right on the heels of a long-COVID study suggesting that an autoimmune subset is present, a fibromyalgia (FM) study pops up suggesting the same thing.”
www.healthrising.org/blog/2025/11...
“Right on the heels of a long-COVID study suggesting that an autoimmune subset is present, a fibromyalgia (FM) study pops up suggesting the same thing.”
www.healthrising.org/blog/2025/11...
A Fibromyalgia Autoimmune Subset Rears Its Head - Health Rising
More evidence is presented that the most severely ill fibromyalgia patients have an autoimmune disease.
www.healthrising.org
November 26, 2025 at 11:06 PM
Health Rising: “A Fibromyalgia Autoimmune Subset Rears Its Head”
“Right on the heels of a long-COVID study suggesting that an autoimmune subset is present, a fibromyalgia (FM) study pops up suggesting the same thing.”
www.healthrising.org/blog/2025/11...
“Right on the heels of a long-COVID study suggesting that an autoimmune subset is present, a fibromyalgia (FM) study pops up suggesting the same thing.”
www.healthrising.org/blog/2025/11...
CAR-T, drugs like Anktiva or new targeted antivirals are where my currents hopes life for future treatments.
Charité University Hospital in Berlin reports that CAR-T-cell therapy has sent people with lupus and rheumatoid arthritis into remission.
They lose autoantibodies and symptoms disappear.
Researchers call it something totally new.
www.nature.com/articles/d41...
They lose autoantibodies and symptoms disappear.
Researchers call it something totally new.
www.nature.com/articles/d41...
‘They don’t have symptoms’: CAR-T therapies send autoimmune diseases into remission
Engineered T cells that have been used to treat ulcerative colitis, rheumatoid arthritis and lupus show promising results.
www.nature.com
November 26, 2025 at 8:41 PM
CAR-T, drugs like Anktiva or new targeted antivirals are where my currents hopes life for future treatments.
I get side effects from all my meds, including the ones that help.
So every now and then I’ll see if I can stop or taper down a MCAS med to relieve a side effect and let me tell you the answer yesterday from my body was a HARD NO 😂
So every now and then I’ll see if I can stop or taper down a MCAS med to relieve a side effect and let me tell you the answer yesterday from my body was a HARD NO 😂
November 26, 2025 at 8:34 PM
I get side effects from all my meds, including the ones that help.
So every now and then I’ll see if I can stop or taper down a MCAS med to relieve a side effect and let me tell you the answer yesterday from my body was a HARD NO 😂
So every now and then I’ll see if I can stop or taper down a MCAS med to relieve a side effect and let me tell you the answer yesterday from my body was a HARD NO 😂
Reposted by Ginger Billie
SELF: '7 of the Worst Things You Can Do During Cold And Flu Season'
'Dr. Steven Lamm internist & director..NYU Langone...also points out that it’s not just long COVID—people can get “long influenza” as well...they will have mental fogginess, excessive fatigue..'
www.self.com/story/cold-f...
'Dr. Steven Lamm internist & director..NYU Langone...also points out that it’s not just long COVID—people can get “long influenza” as well...they will have mental fogginess, excessive fatigue..'
www.self.com/story/cold-f...
7 of the Worst Things You Can Do During Cold And Flu Season
Plus, what doctors recommend to help safeguard your health.
www.self.com
November 25, 2025 at 10:28 PM
SELF: '7 of the Worst Things You Can Do During Cold And Flu Season'
'Dr. Steven Lamm internist & director..NYU Langone...also points out that it’s not just long COVID—people can get “long influenza” as well...they will have mental fogginess, excessive fatigue..'
www.self.com/story/cold-f...
'Dr. Steven Lamm internist & director..NYU Langone...also points out that it’s not just long COVID—people can get “long influenza” as well...they will have mental fogginess, excessive fatigue..'
www.self.com/story/cold-f...
Has anyone here done a two day CPET?
November 26, 2025 at 8:29 PM
Has anyone here done a two day CPET?
Just a reminder that anyone who posts about “fixing”, “solving” or “curing” their MECFS or Long Covid is full of shit and trying to scam you.
If you have the spoons call them out on this. We need these post capitalistic hyper individualistic snake oil scams called out.
If you have the spoons call them out on this. We need these post capitalistic hyper individualistic snake oil scams called out.
November 26, 2025 at 8:27 PM
Just a reminder that anyone who posts about “fixing”, “solving” or “curing” their MECFS or Long Covid is full of shit and trying to scam you.
If you have the spoons call them out on this. We need these post capitalistic hyper individualistic snake oil scams called out.
If you have the spoons call them out on this. We need these post capitalistic hyper individualistic snake oil scams called out.
Reposted by Ginger Billie
From Asan Medical Center, studying 278 people about a year after mild COVID, researchers found those with long COVID-related cognitive issues had signs of brain injury, iron buildup, and neurodegenerative changes not seen in other patients.
www.nature.com/articles/s41...
www.nature.com/articles/s41...
Distinct brain alterations and neurodegenerative processes in cognitive impairment associated with post-acute sequelae of COVID-19 - Nature Communications
Post-acute sequelae of SARS-CoV-2 (PASC) have been linked to brain alterations, but association with cognitive problems are not well understood. Here, the authors analyze blood proteins and brain MRI ...
www.nature.com
November 26, 2025 at 2:24 PM
From Asan Medical Center, studying 278 people about a year after mild COVID, researchers found those with long COVID-related cognitive issues had signs of brain injury, iron buildup, and neurodegenerative changes not seen in other patients.
www.nature.com/articles/s41...
www.nature.com/articles/s41...
Reposted by Ginger Billie
1) In this new @OpenMedF video, Dr. Chris Armstrong explains his main hypothesis of ME/CFS.
He suspects there is an inefficiency in producing ATP (energy), but this isn’t only about mitochondria (the engines), but also about the fuel they get...
He suspects there is an inefficiency in producing ATP (energy), but this isn’t only about mitochondria (the engines), but also about the fuel they get...
November 26, 2025 at 9:33 AM
1) In this new @OpenMedF video, Dr. Chris Armstrong explains his main hypothesis of ME/CFS.
He suspects there is an inefficiency in producing ATP (energy), but this isn’t only about mitochondria (the engines), but also about the fuel they get...
He suspects there is an inefficiency in producing ATP (energy), but this isn’t only about mitochondria (the engines), but also about the fuel they get...
Show recommendation for folks where ingesting sight/sound can be hard:
Pluribus on Apple TV is a good show bc the shots are slow and it does not have a lot of music.
However, it IS suspenseful. I temper this by reading the plot of the episode before I watch it.
tv.apple.com/us/show/plur...
Pluribus on Apple TV is a good show bc the shots are slow and it does not have a lot of music.
However, it IS suspenseful. I temper this by reading the plot of the episode before I watch it.
tv.apple.com/us/show/plur...
Watch Pluribus - Apple TV
The most miserable person on Earth must save the world from happiness.
tv.apple.com
November 26, 2025 at 12:00 AM
Show recommendation for folks where ingesting sight/sound can be hard:
Pluribus on Apple TV is a good show bc the shots are slow and it does not have a lot of music.
However, it IS suspenseful. I temper this by reading the plot of the episode before I watch it.
tv.apple.com/us/show/plur...
Pluribus on Apple TV is a good show bc the shots are slow and it does not have a lot of music.
However, it IS suspenseful. I temper this by reading the plot of the episode before I watch it.
tv.apple.com/us/show/plur...
Heart symptoms that I would have gone to the ER for years ago are now just part of the daily.
Chest pain, palpitations, HR > 100 at standing rest, shortness of breath. All things I have gotten “used” to.
Chest pain, palpitations, HR > 100 at standing rest, shortness of breath. All things I have gotten “used” to.
Australia's Heart Foundation just launched an info campaign on the harms of COVID to cardiovascular health - good to see!
But current vaccines only reduce risk of heart damage, they do not eliminate it. We need masking, clean indoor air, better prevention & next gen vaccines
But current vaccines only reduce risk of heart damage, they do not eliminate it. We need masking, clean indoor air, better prevention & next gen vaccines
November 25, 2025 at 9:18 PM
Heart symptoms that I would have gone to the ER for years ago are now just part of the daily.
Chest pain, palpitations, HR > 100 at standing rest, shortness of breath. All things I have gotten “used” to.
Chest pain, palpitations, HR > 100 at standing rest, shortness of breath. All things I have gotten “used” to.
Being horizontal consistently (less up and down) has helped alleviate the intense coat hanger pain from last week, but I also think having a heat pack on the area has helped a lot too.
Coat hanger pain is intense 😖
Coat hanger pain is intense 😖
November 25, 2025 at 6:49 PM
Being horizontal consistently (less up and down) has helped alleviate the intense coat hanger pain from last week, but I also think having a heat pack on the area has helped a lot too.
Coat hanger pain is intense 😖
Coat hanger pain is intense 😖
Reposted by Ginger Billie
Researchers from Guangzhou University reviewed evidence linking viruses to gut cancers.
At least 25% of people with HIV develop cancer, with higher risk across the GI tract.
SARS-CoV-2 may also raise long-term risk, but evidence is still emerging.
www.sciencedirect.com/science/arti...
At least 25% of people with HIV develop cancer, with higher risk across the GI tract.
SARS-CoV-2 may also raise long-term risk, but evidence is still emerging.
www.sciencedirect.com/science/arti...
Viruses in gastrointestinal cancers: Molecular pathogenesis, oncogenic mechanisms, and translational perspectives
Viral pathogens are one of the most significant causes of human carcinogenesis, contributing to up to 15–20 % of worldwide cancers. The gastrointestin…
www.sciencedirect.com
November 25, 2025 at 3:33 PM
Researchers from Guangzhou University reviewed evidence linking viruses to gut cancers.
At least 25% of people with HIV develop cancer, with higher risk across the GI tract.
SARS-CoV-2 may also raise long-term risk, but evidence is still emerging.
www.sciencedirect.com/science/arti...
At least 25% of people with HIV develop cancer, with higher risk across the GI tract.
SARS-CoV-2 may also raise long-term risk, but evidence is still emerging.
www.sciencedirect.com/science/arti...
I got my chronic market newsletter this morning.
It is a great website. You can buy items from folks with MECFS and you can also sign up to have a letter sent to you if you need a pick me up.
chronic.market
It is a great website. You can buy items from folks with MECFS and you can also sign up to have a letter sent to you if you need a pick me up.
chronic.market
Chronic Market
chronic.market
November 25, 2025 at 6:18 PM
I got my chronic market newsletter this morning.
It is a great website. You can buy items from folks with MECFS and you can also sign up to have a letter sent to you if you need a pick me up.
chronic.market
It is a great website. You can buy items from folks with MECFS and you can also sign up to have a letter sent to you if you need a pick me up.
chronic.market
Reposted by Ginger Billie
"Some people refer to the long Covid experience as a 'journey.' I wish they would stop. I’m pinned down by it, stuck with it. I feel like I’m getting nowhere." www.statnews.com/2025/11/25/c...
I have long Covid. Don’t call my chronic disease a ‘journey’
A “journey” is something you choose. No one chooses chronic illness.
www.statnews.com
November 25, 2025 at 4:44 PM
"Some people refer to the long Covid experience as a 'journey.' I wish they would stop. I’m pinned down by it, stuck with it. I feel like I’m getting nowhere." www.statnews.com/2025/11/25/c...
Reposted by Ginger Billie
Our recap of last week's Long COVID International Conference is up now at @thesicktimes.org! Featuring summaries of talks that we found most notable (and a few hints about interesting results that aren't public yet). thesicktimes.org/2025/11/25/i...
International Long COVID conference spotlights biomarker and mechanism research - The Sick Times
The event, now in its third year, also revealed updates about clinical trials and healthcare for the disease.
thesicktimes.org
November 25, 2025 at 6:04 PM
Our recap of last week's Long COVID International Conference is up now at @thesicktimes.org! Featuring summaries of talks that we found most notable (and a few hints about interesting results that aren't public yet). thesicktimes.org/2025/11/25/i...
Paternalism in disability, underfunded and chronic illness research is on full display when someone vows to withdraw, alter or somehow be punitive to the recipients of that research.
This is why I’ll always fight for a well funded NIH and science community so research is in the hands of many.
This is why I’ll always fight for a well funded NIH and science community so research is in the hands of many.
November 25, 2025 at 12:28 AM
Paternalism in disability, underfunded and chronic illness research is on full display when someone vows to withdraw, alter or somehow be punitive to the recipients of that research.
This is why I’ll always fight for a well funded NIH and science community so research is in the hands of many.
This is why I’ll always fight for a well funded NIH and science community so research is in the hands of many.
Reposted by Ginger Billie
How exciting!
CRISPR reversed chemotherapy resistance in lung cancer, making tumors more responsive to chemotherapy. Eventually this tool can be applied to other types of cancers.
CRISPR has so many applications.
🧪 www.sciencedaily.com/releases/202...
CRISPR reversed chemotherapy resistance in lung cancer, making tumors more responsive to chemotherapy. Eventually this tool can be applied to other types of cancers.
CRISPR has so many applications.
🧪 www.sciencedaily.com/releases/202...
CRISPR unlocks a new way to defeat resistant lung cancer
Scientists used CRISPR to disable the NRF2 gene, restoring chemotherapy sensitivity in lung cancer cells and slowing tumor growth. The technique worked even when only a fraction of tumor cells were ed...
www.sciencedaily.com
November 23, 2025 at 9:46 PM
How exciting!
CRISPR reversed chemotherapy resistance in lung cancer, making tumors more responsive to chemotherapy. Eventually this tool can be applied to other types of cancers.
CRISPR has so many applications.
🧪 www.sciencedaily.com/releases/202...
CRISPR reversed chemotherapy resistance in lung cancer, making tumors more responsive to chemotherapy. Eventually this tool can be applied to other types of cancers.
CRISPR has so many applications.
🧪 www.sciencedaily.com/releases/202...
Reposted by Ginger Billie
I will be the first to admit I couldn’t understand why anyone would oppose Assisted Dying… and then I became disabled and had it “offered” to me.
It’s not compassionate when there’s coercion.
It’s not dignified when it’s offered in lieu of care.
Listen to disabled people.
It’s not compassionate when there’s coercion.
It’s not dignified when it’s offered in lieu of care.
Listen to disabled people.
November 24, 2025 at 9:45 PM
I will be the first to admit I couldn’t understand why anyone would oppose Assisted Dying… and then I became disabled and had it “offered” to me.
It’s not compassionate when there’s coercion.
It’s not dignified when it’s offered in lieu of care.
Listen to disabled people.
It’s not compassionate when there’s coercion.
It’s not dignified when it’s offered in lieu of care.
Listen to disabled people.
I have to fight for my happiness every day.
Being isolated at home, with symptoms only at a dull roar when I am fully horizontal with minimal stimulus is HARD.
This is hard.
Being isolated at home, with symptoms only at a dull roar when I am fully horizontal with minimal stimulus is HARD.
This is hard.
November 24, 2025 at 9:25 PM
I have to fight for my happiness every day.
Being isolated at home, with symptoms only at a dull roar when I am fully horizontal with minimal stimulus is HARD.
This is hard.
Being isolated at home, with symptoms only at a dull roar when I am fully horizontal with minimal stimulus is HARD.
This is hard.
Reposted by Ginger Billie
Harvard researchers showed that in mice, vaccines made only from conserved CD8 T cell epitopes gave strong protection against SARS-CoV-2.
A simple intranasal booster made them as protective as current spike mRNA vaccines.
www.science.org/doi/10.1126/...
A simple intranasal booster made them as protective as current spike mRNA vaccines.
www.science.org/doi/10.1126/...
Conserved CD8 T cell vaccines without B cell epitopes drive robust protection against SARS-CoV-2 that is enhanced by intranasal boost
Conserved CD8 T cell vaccines provide robust protection against SARS-CoV-2 that is enhanced by intranasal boosting.
www.science.org
November 24, 2025 at 4:58 PM
Harvard researchers showed that in mice, vaccines made only from conserved CD8 T cell epitopes gave strong protection against SARS-CoV-2.
A simple intranasal booster made them as protective as current spike mRNA vaccines.
www.science.org/doi/10.1126/...
A simple intranasal booster made them as protective as current spike mRNA vaccines.
www.science.org/doi/10.1126/...
Reposted by Ginger Billie
At the Medical University of Innsbruck, researchers reviewed 120 cases and found that postural orthostatic tachycardia syndrome, or POTS, was the most frequent cardiovascular autonomic disorder diagnosed after COVID-19 infection or vaccination.
link.springer.com/article/10.1...
link.springer.com/article/10.1...
Postural orthostatic tachycardia syndrome is the most frequent cardiovascular autonomic disorder following COVID-19 infection or vaccination - Journal of Neurology
Background Cardiovascular autonomic disorders (CAD) were described following COVID-19 infection and vaccination, but previous reports were limited in size and follow-up. Here, we aimed to investigate ...
link.springer.com
November 24, 2025 at 5:43 PM
At the Medical University of Innsbruck, researchers reviewed 120 cases and found that postural orthostatic tachycardia syndrome, or POTS, was the most frequent cardiovascular autonomic disorder diagnosed after COVID-19 infection or vaccination.
link.springer.com/article/10.1...
link.springer.com/article/10.1...
Reposted by Ginger Billie
Mucosal Viruses in ME/CFS: A Missing Piece of the Puzzle?
www.mdpi.com/1422-0067/26...
"Emerging evidence from saliva, mucosal tissues, & longitudinal studies suggests latent viruses can persist and periodically reactivate at mucosal sites, potentially driving immune dysregulation"
#MEcfs #PwME
www.mdpi.com/1422-0067/26...
"Emerging evidence from saliva, mucosal tissues, & longitudinal studies suggests latent viruses can persist and periodically reactivate at mucosal sites, potentially driving immune dysregulation"
#MEcfs #PwME
www.mdpi.com
November 24, 2025 at 2:40 AM
Mucosal Viruses in ME/CFS: A Missing Piece of the Puzzle?
www.mdpi.com/1422-0067/26...
"Emerging evidence from saliva, mucosal tissues, & longitudinal studies suggests latent viruses can persist and periodically reactivate at mucosal sites, potentially driving immune dysregulation"
#MEcfs #PwME
www.mdpi.com/1422-0067/26...
"Emerging evidence from saliva, mucosal tissues, & longitudinal studies suggests latent viruses can persist and periodically reactivate at mucosal sites, potentially driving immune dysregulation"
#MEcfs #PwME
Reposted by Ginger Billie
In this interview, Dr. Jonas Bergquist and Dr. Alain Moreau talk about their main ideas behind #MECFS, including an immune system that is too active in the brain and spinal cord, inherited factors, and how genes are expressed.
👉 ow.ly/fUYM50XtwW1.
👉 ow.ly/fUYM50XtwW1.
November 18, 2025 at 3:54 PM
In this interview, Dr. Jonas Bergquist and Dr. Alain Moreau talk about their main ideas behind #MECFS, including an immune system that is too active in the brain and spinal cord, inherited factors, and how genes are expressed.
👉 ow.ly/fUYM50XtwW1.
👉 ow.ly/fUYM50XtwW1.
I left the house twice yesterday.
I was in a tired but wired state.
I usually never leave the house unless it’s absolutely necessary.
I have been fighting to up HRV/lower HR numbers for the past year.
Hopefully they’ll go back up and this crash doesn’t last too long.
I was in a tired but wired state.
I usually never leave the house unless it’s absolutely necessary.
I have been fighting to up HRV/lower HR numbers for the past year.
Hopefully they’ll go back up and this crash doesn’t last too long.
November 23, 2025 at 7:24 PM
I left the house twice yesterday.
I was in a tired but wired state.
I usually never leave the house unless it’s absolutely necessary.
I have been fighting to up HRV/lower HR numbers for the past year.
Hopefully they’ll go back up and this crash doesn’t last too long.
I was in a tired but wired state.
I usually never leave the house unless it’s absolutely necessary.
I have been fighting to up HRV/lower HR numbers for the past year.
Hopefully they’ll go back up and this crash doesn’t last too long.
Reposted by Ginger Billie
This is an excellent piece on PEM by @darthfoo.bsky.social. Seriously considering sending to literally everyone I know.
substack.com/home/post/p-...
substack.com/home/post/p-...
Why I Can’t Just Meet You for Dinner
The Reality of Post-Exertional Malaise
substack.com
November 23, 2025 at 6:23 PM
This is an excellent piece on PEM by @darthfoo.bsky.social. Seriously considering sending to literally everyone I know.
substack.com/home/post/p-...
substack.com/home/post/p-...