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.
Coat hanger pain and concussed feeling are awful today.
I had one meeting and have been in bed the rest of the day.
Being horizontal and using heat on my neck.
Taking breaks btwn phone and resting with eyes closed.
I’m guessing this is the delayed crash from come down from Maraviroc. 😞
I had one meeting and have been in bed the rest of the day.
Being horizontal and using heat on my neck.
Taking breaks btwn phone and resting with eyes closed.
I’m guessing this is the delayed crash from come down from Maraviroc. 😞
November 14, 2025 at 10:13 PM
Coat hanger pain and concussed feeling are awful today.
I had one meeting and have been in bed the rest of the day.
Being horizontal and using heat on my neck.
Taking breaks btwn phone and resting with eyes closed.
I’m guessing this is the delayed crash from come down from Maraviroc. 😞
I had one meeting and have been in bed the rest of the day.
Being horizontal and using heat on my neck.
Taking breaks btwn phone and resting with eyes closed.
I’m guessing this is the delayed crash from come down from Maraviroc. 😞
Every time one of us dies I see it as moral failing of the lack of funding for chronic and pathogen persistent illness.
My heart breaks for Leslie’s family. I so appreciated him telling his story and calling out the atrocities of covid and long covid. 💔
My heart breaks for Leslie’s family. I so appreciated him telling his story and calling out the atrocities of covid and long covid. 💔
@leslieleeiii.bsky.social was one of my favourite voices on Covid & I'm devastated to hear about his passing. A brilliant writer and ally. Incredible loss for our community 💔
November 14, 2025 at 10:08 PM
Every time one of us dies I see it as moral failing of the lack of funding for chronic and pathogen persistent illness.
My heart breaks for Leslie’s family. I so appreciated him telling his story and calling out the atrocities of covid and long covid. 💔
My heart breaks for Leslie’s family. I so appreciated him telling his story and calling out the atrocities of covid and long covid. 💔
Reposted by Ginger Billie
really cool trial of Larazotide at Mass General now expanded and open to both pediatric AND adult participants. rally.massgeneralbrigham.org/study/pediat...
Rally | Long COVID Clinical Trial (7 to 50 year-olds)
Do you or your child have Long COVID? We are studying to see if Larazotide improves symptoms in 7-50 years old. There will be 2 visits at MGH and 4 virtual visits over 8 weeks. Compensation for blood ...
rally.massgeneralbrigham.org
November 14, 2025 at 7:29 PM
really cool trial of Larazotide at Mass General now expanded and open to both pediatric AND adult participants. rally.massgeneralbrigham.org/study/pediat...
Reposted by Ginger Billie
The Scripps tirzepatide trial is in @wired.com today! Thanks so much for covering this @emilymullin.bsky.social!
The signup link for the trial: longcovid.scripps.edu/locitt-t/?ut...
The signup link for the trial: longcovid.scripps.edu/locitt-t/?ut...
Weight-Loss Drug Zepbound Is Being Tested as a Treatment for Long Covid
GLP-1s are being studied for a wide range of conditions. Now, scientists will test whether their anti-inflammatory properties can help alleviate symptoms of long Covid.
www.wired.com
November 14, 2025 at 7:30 PM
The Scripps tirzepatide trial is in @wired.com today! Thanks so much for covering this @emilymullin.bsky.social!
The signup link for the trial: longcovid.scripps.edu/locitt-t/?ut...
The signup link for the trial: longcovid.scripps.edu/locitt-t/?ut...
I really feel like we’re on the precipice of a huge paradigm shift of our understandings of pathogens, immune activation, chronic disease and cancers.
It may be slower than I’d like (cause I wanna be cured NOW), but it’s there.
It may be slower than I’d like (cause I wanna be cured NOW), but it’s there.
Halifax doctor shocked by success of using heat to force cancer cell death halifax.citynews.ca/2025/11/13/h...
Some doctors have noted that when treating cancer patients, those who get sick with an infection, their cancer can go away.
Some doctors have noted that when treating cancer patients, those who get sick with an infection, their cancer can go away.
Halifax doctor shocked by success of using heat to force cancer cell death
There could be another option to treat cancer in the future, after a human trial proved to be extremely successful by raising the temperature of a tumour to kill it off. Dr. Camen Giacomantonio, the c...
halifax.citynews.ca
November 14, 2025 at 6:31 PM
I really feel like we’re on the precipice of a huge paradigm shift of our understandings of pathogens, immune activation, chronic disease and cancers.
It may be slower than I’d like (cause I wanna be cured NOW), but it’s there.
It may be slower than I’d like (cause I wanna be cured NOW), but it’s there.
Reposted by Ginger Billie
i get this from being upright for too long, too! this says it's muscles not getting enough oxygenated blood... thedysautonomiaproject.org/coat-hanger-...
Coat Hanger Phenomenon & The Pretzel Leg Sign
Coat hanger phenomenon is a real phenomenon for patients with orthostatic hypotension or orthostatic intolerance.
thedysautonomiaproject.org
November 14, 2025 at 5:50 PM
i get this from being upright for too long, too! this says it's muscles not getting enough oxygenated blood... thedysautonomiaproject.org/coat-hanger-...
Reposted by Ginger Billie
happy long covid superbowl (polybio symposium day) to all who celebrate
November 14, 2025 at 3:57 PM
happy long covid superbowl (polybio symposium day) to all who celebrate
Reposted by Ginger Billie
Neuroscience News: 'Why Women Face Worse Long COVID'
'New research reveals that women with long COVID show distinct biological disruptions — including gut inflammation, anemia & abnormal hormone levels — that may explain their heightened & persistent symptoms'
neurosciencenews.com/long-covid-w...
'New research reveals that women with long COVID show distinct biological disruptions — including gut inflammation, anemia & abnormal hormone levels — that may explain their heightened & persistent symptoms'
neurosciencenews.com/long-covid-w...
Why Women Face Worse Long COVID - Neuroscience News
New research reveals that women with long COVID show distinct biological disruptions — including gut inflammation, anemia, and abnormal hormone levels — that may explain their heightened and persisten...
neurosciencenews.com
November 14, 2025 at 4:11 PM
Neuroscience News: 'Why Women Face Worse Long COVID'
'New research reveals that women with long COVID show distinct biological disruptions — including gut inflammation, anemia & abnormal hormone levels — that may explain their heightened & persistent symptoms'
neurosciencenews.com/long-covid-w...
'New research reveals that women with long COVID show distinct biological disruptions — including gut inflammation, anemia & abnormal hormone levels — that may explain their heightened & persistent symptoms'
neurosciencenews.com/long-covid-w...
What I think folks fail to understand about why chronically ill or disabled folks stop seeking out doctors is:
We are dismissed
Our symptoms are minimized
They lack empathy from the system burning them out
Appointments aren’t accessible
We are dismissed
Our symptoms are minimized
They lack empathy from the system burning them out
Appointments aren’t accessible
November 14, 2025 at 12:17 AM
What I think folks fail to understand about why chronically ill or disabled folks stop seeking out doctors is:
We are dismissed
Our symptoms are minimized
They lack empathy from the system burning them out
Appointments aren’t accessible
We are dismissed
Our symptoms are minimized
They lack empathy from the system burning them out
Appointments aren’t accessible
Reposted by Ginger Billie
Trauma informed medical providers understand & account for the fact that not only can chronic or complex medical conditions be exhausting, they can also make survivors vulnerable to "functional freeze" & "flop" trauma responses that exacerbate fatigue & brain fog.
November 13, 2025 at 11:39 PM
Trauma informed medical providers understand & account for the fact that not only can chronic or complex medical conditions be exhausting, they can also make survivors vulnerable to "functional freeze" & "flop" trauma responses that exacerbate fatigue & brain fog.
Reposted by Ginger Billie
"You'd be more interesting if you posted about topics other than Covid"
People have actually messaged me this. First, I do. Second, I'm not trying to be all alluring on here lol. Third, I think it's interesting to talk about the elephant in the room when no one else is 🐘
People have actually messaged me this. First, I do. Second, I'm not trying to be all alluring on here lol. Third, I think it's interesting to talk about the elephant in the room when no one else is 🐘
November 13, 2025 at 7:41 PM
"You'd be more interesting if you posted about topics other than Covid"
People have actually messaged me this. First, I do. Second, I'm not trying to be all alluring on here lol. Third, I think it's interesting to talk about the elephant in the room when no one else is 🐘
People have actually messaged me this. First, I do. Second, I'm not trying to be all alluring on here lol. Third, I think it's interesting to talk about the elephant in the room when no one else is 🐘
Neurology specialist appt today.
Mentioned “FND” and psychology of MECFS and when I pushed back, walked back her statements.
She’s referring me to some clinic within the neurology department bc she believes my tremors and weakness need intervention but I am skeptical of what this clinic may offer.
Mentioned “FND” and psychology of MECFS and when I pushed back, walked back her statements.
She’s referring me to some clinic within the neurology department bc she believes my tremors and weakness need intervention but I am skeptical of what this clinic may offer.
November 13, 2025 at 11:57 PM
Neurology specialist appt today.
Mentioned “FND” and psychology of MECFS and when I pushed back, walked back her statements.
She’s referring me to some clinic within the neurology department bc she believes my tremors and weakness need intervention but I am skeptical of what this clinic may offer.
Mentioned “FND” and psychology of MECFS and when I pushed back, walked back her statements.
She’s referring me to some clinic within the neurology department bc she believes my tremors and weakness need intervention but I am skeptical of what this clinic may offer.
Reposted by Ginger Billie
Mount Taranaki seen through Te Rewa Rewa Bridge, New Plymouth.
November 13, 2025 at 10:21 PM
Mount Taranaki seen through Te Rewa Rewa Bridge, New Plymouth.
Reposted by Ginger Billie
you're gonna need a wheelchair so much sooner than you'll win any kind of lottery money or you become independently wealthy. you need to start thinking about what care looks like for you now.
November 13, 2025 at 7:43 PM
you're gonna need a wheelchair so much sooner than you'll win any kind of lottery money or you become independently wealthy. you need to start thinking about what care looks like for you now.
Reposted by Ginger Billie
The art and imagination shaped by people living with long COVID these past six years feels almost miraculous.
And I keep wondering what we’ll create when this strange confinement finally breaks.
I’m not sure the world is ready for the brightness waiting beyond it.
And I keep wondering what we’ll create when this strange confinement finally breaks.
I’m not sure the world is ready for the brightness waiting beyond it.
November 13, 2025 at 7:52 PM
The art and imagination shaped by people living with long COVID these past six years feels almost miraculous.
And I keep wondering what we’ll create when this strange confinement finally breaks.
I’m not sure the world is ready for the brightness waiting beyond it.
And I keep wondering what we’ll create when this strange confinement finally breaks.
I’m not sure the world is ready for the brightness waiting beyond it.
Reposted by Ginger Billie
Bloomberg Law: 'MetLife Owes Disability Pay to Software Engineer With Long Covid'
'A Google LLC software engineer suffering from long Covid won his lawsuit seeking long-term disability benefits from Metropolitan Life Insurance Co..'
news.bloomberglaw.com/employee-ben...
'A Google LLC software engineer suffering from long Covid won his lawsuit seeking long-term disability benefits from Metropolitan Life Insurance Co..'
news.bloomberglaw.com/employee-ben...
MetLife Owes Disability Pay to Software Engineer With Long Covid
A Google LLC software engineer suffering from long Covid won his lawsuit seeking long-term disability benefits from Metropolitan Life Insurance Co.
news.bloomberglaw.com
November 13, 2025 at 7:21 PM
Bloomberg Law: 'MetLife Owes Disability Pay to Software Engineer With Long Covid'
'A Google LLC software engineer suffering from long Covid won his lawsuit seeking long-term disability benefits from Metropolitan Life Insurance Co..'
news.bloomberglaw.com/employee-ben...
'A Google LLC software engineer suffering from long Covid won his lawsuit seeking long-term disability benefits from Metropolitan Life Insurance Co..'
news.bloomberglaw.com/employee-ben...
Reposted by Ginger Billie
I find myself increasingly wondering how able bodied people appear to believe that being disabled is"easy."
Getting accommodations in school, uni and/or work: easy, a breeze, even!
Getting a doctor to write you a certificate supporting your needs: EASY!
Working from home: EASY!
Getting accommodations in school, uni and/or work: easy, a breeze, even!
Getting a doctor to write you a certificate supporting your needs: EASY!
Working from home: EASY!
November 13, 2025 at 6:03 PM
I find myself increasingly wondering how able bodied people appear to believe that being disabled is"easy."
Getting accommodations in school, uni and/or work: easy, a breeze, even!
Getting a doctor to write you a certificate supporting your needs: EASY!
Working from home: EASY!
Getting accommodations in school, uni and/or work: easy, a breeze, even!
Getting a doctor to write you a certificate supporting your needs: EASY!
Working from home: EASY!
Even as we approach fall and winter getting cold at night is a chore with MCAS. 🥵
The house must be freezing (my poor partner), I have a fan that blows air under my sheet, a cooling pad that I crank up to 11 and an ice necklace.
Sometimes I still can’t get cold after all of that! 🥶
The house must be freezing (my poor partner), I have a fan that blows air under my sheet, a cooling pad that I crank up to 11 and an ice necklace.
Sometimes I still can’t get cold after all of that! 🥶
November 13, 2025 at 7:29 PM
Even as we approach fall and winter getting cold at night is a chore with MCAS. 🥵
The house must be freezing (my poor partner), I have a fan that blows air under my sheet, a cooling pad that I crank up to 11 and an ice necklace.
Sometimes I still can’t get cold after all of that! 🥶
The house must be freezing (my poor partner), I have a fan that blows air under my sheet, a cooling pad that I crank up to 11 and an ice necklace.
Sometimes I still can’t get cold after all of that! 🥶
Every. Doctors. Appt.
![Doctor Good news, we found out what's causing your debilitating symptoms and ruining your life
Me That's great! What can we do about it
Doctor Nothing lol
[pic of doctor talking to patient]](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:dbzmdmsaz6lkhb4tv3culzme/bafkreigiebs727wcvbiz77wpcjuytuwgs7adxvfo6arlcozucfqwh6nime@jpeg)
November 13, 2025 at 7:25 PM
Every. Doctors. Appt.
Reposted by Ginger Billie
'Stanford Links Lupus to Common Virus'
"This is the single most impactful finding to emerge from my lab in my entire career," said William Robinson , MD, PhD, a professor of immunology and rheumatology..."We think it applies to 100% of lupus cases."
www.miragenews.com/stanford-lin...
"This is the single most impactful finding to emerge from my lab in my entire career," said William Robinson , MD, PhD, a professor of immunology and rheumatology..."We think it applies to 100% of lupus cases."
www.miragenews.com/stanford-lin...
Stanford Links Lupus to Common Virus
One of humanity's most ubiquitous infectious pathogens bears the blame for the chronic autoimmune condition called systemic lupus erythematosus or
www.miragenews.com
November 13, 2025 at 6:30 PM
'Stanford Links Lupus to Common Virus'
"This is the single most impactful finding to emerge from my lab in my entire career," said William Robinson , MD, PhD, a professor of immunology and rheumatology..."We think it applies to 100% of lupus cases."
www.miragenews.com/stanford-lin...
"This is the single most impactful finding to emerge from my lab in my entire career," said William Robinson , MD, PhD, a professor of immunology and rheumatology..."We think it applies to 100% of lupus cases."
www.miragenews.com/stanford-lin...
Reposted by Ginger Billie
One virus after another being linked to autoimmune conditions & other chronic illnesses. Once you know what to look for…
med.stanford.edu/news/all-new...
med.stanford.edu/news/all-new...
Stanford Medicine scientists tie lupus to a virus nearly all of us carry
The Epstein-Barr virus can convert B cells it’s infected into diabolical overlords that reprogram myriad other immune cells to attack our tissues, Stanford Medicine scientists have found.
med.stanford.edu
November 13, 2025 at 4:01 AM
One virus after another being linked to autoimmune conditions & other chronic illnesses. Once you know what to look for…
med.stanford.edu/news/all-new...
med.stanford.edu/news/all-new...
The back of my neck has been in a lot of pain this week.
I had to sit upright for longer than normal a few days and this often happens when I’m upright for a long time (well a long time for my body).
Do we know what causes this? My guess is CCI or lack of blood flow to neck from the POTS?
I had to sit upright for longer than normal a few days and this often happens when I’m upright for a long time (well a long time for my body).
Do we know what causes this? My guess is CCI or lack of blood flow to neck from the POTS?
November 13, 2025 at 5:47 PM
The back of my neck has been in a lot of pain this week.
I had to sit upright for longer than normal a few days and this often happens when I’m upright for a long time (well a long time for my body).
Do we know what causes this? My guess is CCI or lack of blood flow to neck from the POTS?
I had to sit upright for longer than normal a few days and this often happens when I’m upright for a long time (well a long time for my body).
Do we know what causes this? My guess is CCI or lack of blood flow to neck from the POTS?
Reposted by Ginger Billie
Medical Republic: 'Fibromyalgia finally gets a genetic fingerprint'
'Additionally, certain risk loci overlapped with long covid (BPTF) and ME/CFS (OLFM4, RABGAP1L/GPR52), two poorly characterised disorders, albeit with different lead variants.'
www.medicalrepublic.com.au/fibromyalgia...
'Additionally, certain risk loci overlapped with long covid (BPTF) and ME/CFS (OLFM4, RABGAP1L/GPR52), two poorly characterised disorders, albeit with different lead variants.'
www.medicalrepublic.com.au/fibromyalgia...
Fibromyalgia finally gets a genetic fingerprint - Medical Republic
A massive global study links the chronic pain condition to 26 genes associated with brain signalling, marking a turning point in understanding its biological roots.
www.medicalrepublic.com.au
November 13, 2025 at 2:28 PM
Medical Republic: 'Fibromyalgia finally gets a genetic fingerprint'
'Additionally, certain risk loci overlapped with long covid (BPTF) and ME/CFS (OLFM4, RABGAP1L/GPR52), two poorly characterised disorders, albeit with different lead variants.'
www.medicalrepublic.com.au/fibromyalgia...
'Additionally, certain risk loci overlapped with long covid (BPTF) and ME/CFS (OLFM4, RABGAP1L/GPR52), two poorly characterised disorders, albeit with different lead variants.'
www.medicalrepublic.com.au/fibromyalgia...
My eyelid decided to swell last night. Is this food allergy or new allergy to Tylenol?
I hope not the latter bc Tylenol is my go to pain med bc I’m allergic to NSAIDs.
I hope not the latter bc Tylenol is my go to pain med bc I’m allergic to NSAIDs.
November 13, 2025 at 3:59 PM
My eyelid decided to swell last night. Is this food allergy or new allergy to Tylenol?
I hope not the latter bc Tylenol is my go to pain med bc I’m allergic to NSAIDs.
I hope not the latter bc Tylenol is my go to pain med bc I’m allergic to NSAIDs.
My MCAS food allergies seems to have gotten worse after Maraviroc.
I’m seeing new onset hives, lip tingling and face itching with previously safe foods.
I hope this goes away the further out I get from stopping treatment.
I’m seeing new onset hives, lip tingling and face itching with previously safe foods.
I hope this goes away the further out I get from stopping treatment.
November 13, 2025 at 3:54 AM
My MCAS food allergies seems to have gotten worse after Maraviroc.
I’m seeing new onset hives, lip tingling and face itching with previously safe foods.
I hope this goes away the further out I get from stopping treatment.
I’m seeing new onset hives, lip tingling and face itching with previously safe foods.
I hope this goes away the further out I get from stopping treatment.