This seems especially relevant on this site. Those of us harmed aren’t “anti vax”, yet any mention of how our illness started is met with a block. Research #LongVax
November 19, 2024 at 12:02 PM
This seems especially relevant on this site. Those of us harmed aren’t “anti vax”, yet any mention of how our illness started is met with a block. Research #LongVax
Latest 🎯🧵 by Dr. @harryspoelstra.bsky.social on differentiating #LongCovid vs LongVax:
"Many have asked me how to differentiate (=DD) between longCovid & longVax(PVS).
Below I’ll try to give you, although lengthy, sorry, a simplified overview, with some refs..."
threadreaderapp.com/thread/19798...
"Many have asked me how to differentiate (=DD) between longCovid & longVax(PVS).
Below I’ll try to give you, although lengthy, sorry, a simplified overview, with some refs..."
threadreaderapp.com/thread/19798...
October 20, 2025 at 1:49 AM
Latest 🎯🧵 by Dr. @harryspoelstra.bsky.social on differentiating #LongCovid vs LongVax:
"Many have asked me how to differentiate (=DD) between longCovid & longVax(PVS).
Below I’ll try to give you, although lengthy, sorry, a simplified overview, with some refs..."
threadreaderapp.com/thread/19798...
"Many have asked me how to differentiate (=DD) between longCovid & longVax(PVS).
Below I’ll try to give you, although lengthy, sorry, a simplified overview, with some refs..."
threadreaderapp.com/thread/19798...
I just learned Gem passed away. I’m heartbroken and angry😔 Gem was #vaxinjured from the AZ vaccine in 2021. This is her first message to me—she reached out after I proved my daughter’s seizures weren’t believed. What more will it take?! #longvax #longcovid
www.dailymail.co.uk/news/article...
www.dailymail.co.uk/news/article...
November 25, 2024 at 6:27 AM
I just learned Gem passed away. I’m heartbroken and angry😔 Gem was #vaxinjured from the AZ vaccine in 2021. This is her first message to me—she reached out after I proved my daughter’s seizures weren’t believed. What more will it take?! #longvax #longcovid
www.dailymail.co.uk/news/article...
www.dailymail.co.uk/news/article...
www.sciencedirect.com/science/arti... what to call it, Post-COVIDVac syndrome ? PCVS? #Longvax? As a group are they some of the most stigmatised/gaslit cohort of pots/ #mecfs / #longcovid pts we see?
December 30, 2024 at 12:18 AM
www.sciencedirect.com/science/arti... what to call it, Post-COVIDVac syndrome ? PCVS? #Longvax? As a group are they some of the most stigmatised/gaslit cohort of pots/ #mecfs / #longcovid pts we see?
This is why I’m beyond happy that I started wearing an Apple Watch a couple of years before getting #LongVax (akin to #LongCovid).
The crashes in my health metrics is right there. HR 200 whilst *asleep*? Captured. Resting HR tanking? There it is. HRV plummeted and has never recovered? Right there.
The crashes in my health metrics is right there. HR 200 whilst *asleep*? Captured. Resting HR tanking? There it is. HRV plummeted and has never recovered? Right there.
November 2, 2024 at 2:23 PM
This is why I’m beyond happy that I started wearing an Apple Watch a couple of years before getting #LongVax (akin to #LongCovid).
The crashes in my health metrics is right there. HR 200 whilst *asleep*? Captured. Resting HR tanking? There it is. HRV plummeted and has never recovered? Right there.
The crashes in my health metrics is right there. HR 200 whilst *asleep*? Captured. Resting HR tanking? There it is. HRV plummeted and has never recovered? Right there.
Other comparators I’ve heard recently:
- End stage renal failure
- Stage 4 cancer
(Can’t remember the source for the cancer comparison but the renal one was during @dysautonomia.bsky.social Conference 2025)
#LongCovid #LongVax #DysautonomiaAwarenessMonth🩵
- End stage renal failure
- Stage 4 cancer
(Can’t remember the source for the cancer comparison but the renal one was during @dysautonomia.bsky.social Conference 2025)
#LongCovid #LongVax #DysautonomiaAwarenessMonth🩵
Long Covid is having an enormous impact on society.
This article suggests that 1 in 7 people now have #LongCovid
theconversation.com/long-covid-i...
This article suggests that 1 in 7 people now have #LongCovid
theconversation.com/long-covid-i...
Long COVID is more than fatigue. Our new study suggests its impact is similar to a stroke or Parkinson’s
Long COVID isn’t just a bunch of lingering symptoms. A new study shows it can stop peoole doing what they want to do, and need to do.
theconversation.com
October 19, 2025 at 12:04 PM
Other comparators I’ve heard recently:
- End stage renal failure
- Stage 4 cancer
(Can’t remember the source for the cancer comparison but the renal one was during @dysautonomia.bsky.social Conference 2025)
#LongCovid #LongVax #DysautonomiaAwarenessMonth🩵
- End stage renal failure
- Stage 4 cancer
(Can’t remember the source for the cancer comparison but the renal one was during @dysautonomia.bsky.social Conference 2025)
#LongCovid #LongVax #DysautonomiaAwarenessMonth🩵
You can have ME from a virus. You can have ME from childbirth. You can have ME from stress. You can have ME from a car crash. People will advocate and include you. You get ME from a vaccine? You are on your own. Excluded and never mentioned by ME advocates. #MECFS #LongCovid #LongVax
January 1, 2025 at 9:03 AM
You can have ME from a virus. You can have ME from childbirth. You can have ME from stress. You can have ME from a car crash. People will advocate and include you. You get ME from a vaccine? You are on your own. Excluded and never mentioned by ME advocates. #MECFS #LongCovid #LongVax
New Protocol to Treat COVID-19 Vaccine Spike Disease or Longvax Syndrome
www.thailandmedical.news/news/new-pro...
www.thailandmedical.news/news/new-pro...
New Protocol to Treat COVID-19 Vaccine Spike Disease or Longvax Syndrome - Thailand Medical News
www.thailandmedical.news
July 2, 2025 at 2:45 AM
New Protocol to Treat COVID-19 Vaccine Spike Disease or Longvax Syndrome
www.thailandmedical.news/news/new-pro...
www.thailandmedical.news/news/new-pro...
🚩🚩🚩🚩🚩 Calling an anti-vax activist "Britain’s high-profile cardiologist"
🚩🚩🚩🚩🚩 calling LongCOVID "LongVaX". By now you shouldn´t take anything serious that is written here. It is insulting to patients.
7/7
🚩🚩🚩🚩🚩 calling LongCOVID "LongVaX". By now you shouldn´t take anything serious that is written here. It is insulting to patients.
7/7
April 25, 2024 at 12:00 PM
🚩🚩🚩🚩🚩 Calling an anti-vax activist "Britain’s high-profile cardiologist"
🚩🚩🚩🚩🚩 calling LongCOVID "LongVaX". By now you shouldn´t take anything serious that is written here. It is insulting to patients.
7/7
🚩🚩🚩🚩🚩 calling LongCOVID "LongVaX". By now you shouldn´t take anything serious that is written here. It is insulting to patients.
7/7
This really hits as a limited-but-not-housebound chronically ill partner & caretaker to a housebound person with #LongVax
– You see, if so many were indeed housebound, you’d expect to see them everywhere!
#longcovid #ableism #satire
#longcovid #ableism #satire
July 11, 2026 at 7:38 PM
This really hits as a limited-but-not-housebound chronically ill partner & caretaker to a housebound person with #LongVax
Just looked. Seems like more of the same. It’s frustrating because we’d be stronger together 😔
The irony too that technically I’m LongVax since the Pfizer vaccine triggered a baseline drop. We have a lot more in common than they realize.
The irony too that technically I’m LongVax since the Pfizer vaccine triggered a baseline drop. We have a lot more in common than they realize.
September 12, 2025 at 2:27 AM
Just looked. Seems like more of the same. It’s frustrating because we’d be stronger together 😔
The irony too that technically I’m LongVax since the Pfizer vaccine triggered a baseline drop. We have a lot more in common than they realize.
The irony too that technically I’m LongVax since the Pfizer vaccine triggered a baseline drop. We have a lot more in common than they realize.
Here is my take on the research showing biomarkers in post-vaccine injury which is very similar to Long Covid.
Does anyone know how much it would cost to get these panels done?
unitedstatesian.blogspot.com/2025/03/post...
Does anyone know how much it would cost to get these panels done?
unitedstatesian.blogspot.com/2025/03/post...
Troy Roach on X: "Here is my take on the research showing biomarkers in post-vaccine injury which is very similar to Long Covid. #LongCovid #MECFS #LongVax https://t.co/kyMdyNW56V" / X
Here is my take on the research showing biomarkers in post-vaccine injury which is very similar to Long Covid. #LongCovid #MECFS #LongVax https://t.co/kyMdyNW56V
x.com
March 8, 2025 at 3:44 PM
Here is my take on the research showing biomarkers in post-vaccine injury which is very similar to Long Covid.
Does anyone know how much it would cost to get these panels done?
unitedstatesian.blogspot.com/2025/03/post...
Does anyone know how much it would cost to get these panels done?
unitedstatesian.blogspot.com/2025/03/post...
I was interviewed as a LISTEN study participant for this piece in The New Yorker. I really believe in the power of patient-led studies like this one, and I’m grateful to be a part of it. #longcovid #longvax
What Would It Mean for Scientists to Listen to Patients?
People with post-viral illnesses often feel shut out of the scientific establishment. Two renowned Yale researchers are attempting to bring them in.
www.newyorker.com
January 30, 2024 at 12:49 AM
I was interviewed as a LISTEN study participant for this piece in The New Yorker. I really believe in the power of patient-led studies like this one, and I’m grateful to be a part of it. #longcovid #longvax
/off topic but this reminds that my iPhone’s face recognition has no problems when I’m wearing a hat, mask AND sunnies; yet with none of those things but in a flare/crash/dysregulation? It repeatedly fails.
Anyone else? 🤔
#Dysautonomia #PEM #PESE #POTS #LongCovid #LongVax
Anyone else? 🤔
#Dysautonomia #PEM #PESE #POTS #LongCovid #LongVax
First of all, the peer reviewed science does not even support the concept behind no masks for ICE. It should be "No sunglasses for ICE".
But also, very importantly, NOBODY should have to risk their health because of the actions of one group of people.
www.nature.com/articles/s41...
But also, very importantly, NOBODY should have to risk their health because of the actions of one group of people.
www.nature.com/articles/s41...
Face masks are less effective than sunglasses in masking face identity - Scientific Reports
Scientific Reports - Face masks are less effective than sunglasses in masking face identity
www.nature.com
June 7, 2025 at 10:14 PM
/off topic but this reminds that my iPhone’s face recognition has no problems when I’m wearing a hat, mask AND sunnies; yet with none of those things but in a flare/crash/dysregulation? It repeatedly fails.
Anyone else? 🤔
#Dysautonomia #PEM #PESE #POTS #LongCovid #LongVax
Anyone else? 🤔
#Dysautonomia #PEM #PESE #POTS #LongCovid #LongVax
Incredibly strong and fearless advocate, her love for her son — she said things about COVID #longcovid #longcovidkids #longvax that too many choose to ignore out of cowardice , including in medical community #medsky we must do better
November 26, 2024 at 6:04 AM
Incredibly strong and fearless advocate, her love for her son — she said things about COVID #longcovid #longcovidkids #longvax that too many choose to ignore out of cowardice , including in medical community #medsky we must do better
Medicine Keeps Failing the Fatigued: CFS, Long COVID and Long Vax www.peoplespharmacy.com/articles/pro... via @peoplespharmacy
#CFS #chronicfatigue #LongCovid #LongVax #health
#CFS #chronicfatigue #LongCovid #LongVax #health
Medicine Keeps Failing the Fatigued: CFS, Long COVID and Long Vax
Chronic fatigue syndrome or CFS shares many symptoms with long COVID or long vax. Why did medicine dismiss long-suffering patients so long?
www.peoplespharmacy.com
September 20, 2026 at 8:47 PM
Medicine Keeps Failing the Fatigued: CFS, Long COVID and Long Vax www.peoplespharmacy.com/articles/pro... via @peoplespharmacy
#CFS #chronicfatigue #LongCovid #LongVax #health
#CFS #chronicfatigue #LongCovid #LongVax #health
She does this when my HRV tanks too, and has so many times alerted me before my Apple Watch does.
#Dysautonomia #PACVS #PCVS #POTS #PEM #LongVax #LongCovid
#Dysautonomia #PACVS #PCVS #POTS #PEM #LongVax #LongCovid
Me: I’m sad
My super empathetic cat: I know, that’s why I’m screaming at you to pick me up/am scrambling up your body anyway even if you did just step out of the shower and are still wet/so I can nuzzle into your neck and purr pure love into your heart 🐾 💓💕
My super empathetic cat: I know, that’s why I’m screaming at you to pick me up/am scrambling up your body anyway even if you did just step out of the shower and are still wet/so I can nuzzle into your neck and purr pure love into your heart 🐾 💓💕
me: i'm sad
cat: shut the fuck up and serve me food
cat: shut the fuck up and serve me food
November 13, 2024 at 3:18 PM
She does this when my HRV tanks too, and has so many times alerted me before my Apple Watch does.
#Dysautonomia #PACVS #PCVS #POTS #PEM #LongVax #LongCovid
#Dysautonomia #PACVS #PCVS #POTS #PEM #LongVax #LongCovid
“I am not anti-vaccine. I am pro-truth, and pro-compassion. I want to see a world where those harmed by both COVID-19 and its countermeasures are acknowledged, studied, and cared for.”
#PCVS #LongVax #LongCovid
thesicktimes.org/2025/07/25/b...
#PCVS #LongVax #LongCovid
thesicktimes.org/2025/07/25/b...
Between two crises: Living with Post-COVID Vaccine Syndrome in a Long COVID world - The Sick Times
What I thought was a minor reaction became Post-COVID Vaccine Syndrome (PCVS), a condition I now live with alongside thousands of others. PCVS shares symptoms with Long COVID, including nerve pain, dy...
thesicktimes.org
August 5, 2025 at 3:52 PM
“I am not anti-vaccine. I am pro-truth, and pro-compassion. I want to see a world where those harmed by both COVID-19 and its countermeasures are acknowledged, studied, and cared for.”
#PCVS #LongVax #LongCovid
thesicktimes.org/2025/07/25/b...
#PCVS #LongVax #LongCovid
thesicktimes.org/2025/07/25/b...
The only thing I cycle is a recumbent exercise bike as part of the modified Levine Protocol.
(I use RPE instead of heart rate because Ivabradine but also because it’s useful for anyone with #LongCovid/#LongVax as it’s all too easy to flip into overexertion and then pay the price for that 😖)
(I use RPE instead of heart rate because Ivabradine but also because it’s useful for anyone with #LongCovid/#LongVax as it’s all too easy to flip into overexertion and then pay the price for that 😖)
October 28, 2024 at 10:45 AM
The only thing I cycle is a recumbent exercise bike as part of the modified Levine Protocol.
(I use RPE instead of heart rate because Ivabradine but also because it’s useful for anyone with #LongCovid/#LongVax as it’s all too easy to flip into overexertion and then pay the price for that 😖)
(I use RPE instead of heart rate because Ivabradine but also because it’s useful for anyone with #LongCovid/#LongVax as it’s all too easy to flip into overexertion and then pay the price for that 😖)
So huge shout out/recommendation for @gentler.app and logging housework on it or other fitness apps.
It’s WAY too easy to overdo things unknowingly.
It’s also data for any f*ckwit drs that don’t believe/minimise people going through this stuff.
#Dysautonomia #PCVS #LongVax #LongCovid #POTS #PEM
It’s WAY too easy to overdo things unknowingly.
It’s also data for any f*ckwit drs that don’t believe/minimise people going through this stuff.
#Dysautonomia #PCVS #LongVax #LongCovid #POTS #PEM
November 20, 2024 at 11:01 PM
So huge shout out/recommendation for @gentler.app and logging housework on it or other fitness apps.
It’s WAY too easy to overdo things unknowingly.
It’s also data for any f*ckwit drs that don’t believe/minimise people going through this stuff.
#Dysautonomia #PCVS #LongVax #LongCovid #POTS #PEM
It’s WAY too easy to overdo things unknowingly.
It’s also data for any f*ckwit drs that don’t believe/minimise people going through this stuff.
#Dysautonomia #PCVS #LongVax #LongCovid #POTS #PEM
TWO whole ass hours in between #TOTP episodes tonight. Tryna work out if I’ll have time to fit a shower in 🤔 #DysautonomiaProblems #POTS #LongVax #LongCovid
August 29, 2025 at 6:13 PM
TWO whole ass hours in between #TOTP episodes tonight. Tryna work out if I’ll have time to fit a shower in 🤔 #DysautonomiaProblems #POTS #LongVax #LongCovid
Might these also work with LongVax? I am pro-vaccine but got autoimmune mediated SFN after my 5th booster and can’t find any treatment other than less-than-ideal symptomatic relief.
September 17, 2025 at 1:21 AM
Might these also work with LongVax? I am pro-vaccine but got autoimmune mediated SFN after my 5th booster and can’t find any treatment other than less-than-ideal symptomatic relief.