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Beiträge, die mit LONGCOVID getaggt sind
Cerebromicrovascular mechanisms contributing to #longCOVID: implications for neurocognitive health
https://link.springer.com/article/10.1007/s11357-024-01487-4
> This review investigates key pathophysiological mechanisms contributing to cerebrovascular dysfunction in long COVID and their impacts on brain health. We discuss how endothelial tropism of #SARSCoV2 and direct vascular infection trigger endothelial dysfunction, impaired neurovascular coupling, and blood–brain barrier disruption, resulting in compromised cerebral perfusion. Furthermore, the infection appears to induce mitochondrial dysfunction, enhancing oxidative stress and inflammation within cerebral endothelial cells. Autoantibody formation following infection also potentially exacerbates neurovascular injury, contributing to chronic vascular inflammation and ongoing blood–brain barrier compromise. These factors collectively contribute to the emergence of white matter hyperintensities, promote amyloid pathology, and may accelerate neurodegenerative processes, including Alzheimer’s disease.
#PASC #SARS2
https://link.springer.com/article/10.1007/s11357-024-01487-4
> This review investigates key pathophysiological mechanisms contributing to cerebrovascular dysfunction in long COVID and their impacts on brain health. We discuss how endothelial tropism of #SARSCoV2 and direct vascular infection trigger endothelial dysfunction, impaired neurovascular coupling, and blood–brain barrier disruption, resulting in compromised cerebral perfusion. Furthermore, the infection appears to induce mitochondrial dysfunction, enhancing oxidative stress and inflammation within cerebral endothelial cells. Autoantibody formation following infection also potentially exacerbates neurovascular injury, contributing to chronic vascular inflammation and ongoing blood–brain barrier compromise. These factors collectively contribute to the emergence of white matter hyperintensities, promote amyloid pathology, and may accelerate neurodegenerative processes, including Alzheimer’s disease.
#PASC #SARS2
Cerebromicrovascular mechanisms contributing to long COVID: implications for neurocognitive health - GeroScience
Long COVID (also known as post-acute sequelae of SARS-CoV-2 infection [PASC] or post-COVID syndrome) is characterized by persistent symptoms that extend beyond the acute phase of SARS-CoV-2 infection, affecting approximately 10% to over 30% of those …SpringerLink
Extended Paxlovid May Relieve Long Covid Symptoms
https://neurosciencenews.com/paxlovid-long-covid-28314/
#COVID #LONGCOVID #PAXLOVID #KEWLNEWS #PRESS
https://neurosciencenews.com/paxlovid-long-covid-28314/
#COVID #LONGCOVID #PAXLOVID #KEWLNEWS #PRESS
Neuroscience News
Neuroscience News provides research news for neuroscience, neurology, psychology, AI, brain science, mental health, robotics and cognitive sciences.Neuroscience News
Unfortunately, with my long covid, I can’t afford the energy to get angry. I leave that to the more abled people. Whether it is walking, thinking hard, or having deep emotions, it takes energy and I have to limit my exertion.
But, yeah, if you are healthy enough to be angry, you really ought to be furious. For your brothers and sisters, mothers and daughters, fathers and sons, spouses and friends, who literally can no longer spend the energy getting mad about how oligarch-controlled media make us invisible and pretended that everything is fine.
#LC #LongCovid #LivingWithLongCovid @longcovid
@
But, yeah, if you are healthy enough to be angry, you really ought to be furious. For your brothers and sisters, mothers and daughters, fathers and sons, spouses and friends, who literally can no longer spend the energy getting mad about how oligarch-controlled media make us invisible and pretended that everything is fine.
#LC #LongCovid #LivingWithLongCovid @longcovid
@
I will never understand why more people aren’t angry and radicalized by the events of the last five years.
The anti mask, anti-vaxx crowd are angry… but they’re also terribly misinformed and on the wrong side of history.
Those of us with disabilities are livid … but we aren’t heard. We’re treated as even more invisible now than we were five years ago. An unwelcome reminder of Covid and the frail nature of the human condition.
But what about everyone else? The anti mask crowd may be the loudest, but they’re far from the majority.
Why aren’t the rest of you angry? Why are so many people content to accept and normalize mass death and disability?
An article came out in PBS today that puts the total COVID deaths at over 20 million.
20 million people. Those are fathers, mothers, spouses, grandparents, siblings and children. Each number represents a loved one to someone else.
Where’s the outcry?
400 million are dealing with Long Covid. That’s an obscene amount of people whose lives are forever changed. Who may never again know what it’s like to be healthy or exist in a body that isn’t rife with suffering.
Where’s the rage?
We know how to prevent covid. We’ve known for years. Yet rather than adapting our lifestyle and being humble in the face of a novel virus - we’ve given it the reins.
We’ve conceded defeat before we even put up a fight. Accepted repeat infections as inevitable. Shrugged our shoulders as we report more and more deaths. Aggressively minimized and disappeared those with Long Covid.
This should make you angry. It doesn’t need to be this way.
What would success look like? What would fighting back entail?
🫶Mandatory masking in all healthcare facilities (with respirators)
🫶Free tests and vaccines for everyone
🫶Better funding of anti virals and other treatments
🫶Clean air in all public spaces with transparent data visible to the public
🫶Clean air on school busses and anywhere that children congregate
🫶Paid time off for everyone who’s sick
🫶Free respirators in public places AND freely available to anyone who can’t afford precautions
🫶A robust public health campaign about how to properly wear a respirator
🫶A brutally honest public health campaign about the dangers of COVID. We have to stop treating it like a respiratory virus and make the public aware that it’s a multi system vascular virus with immune damaging capabilities
Doing even a few of those things would make a huge difference. Doing all of them would end the pandemic.
Get angry. Get loud. Demand better. Demand transparency.
Say that 20 million dead is not “mild”. That 900 dying every week in the U.S. is not “over”. That 400 million disabled will NOT be ignored.
#covidisairborne #covidisnotover #sarscov2 #longcovid #pandemic #cleanair #wearamask #disability #ableism #eugenics
The anti mask, anti-vaxx crowd are angry… but they’re also terribly misinformed and on the wrong side of history.
Those of us with disabilities are livid … but we aren’t heard. We’re treated as even more invisible now than we were five years ago. An unwelcome reminder of Covid and the frail nature of the human condition.
But what about everyone else? The anti mask crowd may be the loudest, but they’re far from the majority.
Why aren’t the rest of you angry? Why are so many people content to accept and normalize mass death and disability?
An article came out in PBS today that puts the total COVID deaths at over 20 million.
20 million people. Those are fathers, mothers, spouses, grandparents, siblings and children. Each number represents a loved one to someone else.
Where’s the outcry?
400 million are dealing with Long Covid. That’s an obscene amount of people whose lives are forever changed. Who may never again know what it’s like to be healthy or exist in a body that isn’t rife with suffering.
Where’s the rage?
We know how to prevent covid. We’ve known for years. Yet rather than adapting our lifestyle and being humble in the face of a novel virus - we’ve given it the reins.
We’ve conceded defeat before we even put up a fight. Accepted repeat infections as inevitable. Shrugged our shoulders as we report more and more deaths. Aggressively minimized and disappeared those with Long Covid.
This should make you angry. It doesn’t need to be this way.
What would success look like? What would fighting back entail?
🫶Mandatory masking in all healthcare facilities (with respirators)
🫶Free tests and vaccines for everyone
🫶Better funding of anti virals and other treatments
🫶Clean air in all public spaces with transparent data visible to the public
🫶Clean air on school busses and anywhere that children congregate
🫶Paid time off for everyone who’s sick
🫶Free respirators in public places AND freely available to anyone who can’t afford precautions
🫶A robust public health campaign about how to properly wear a respirator
🫶A brutally honest public health campaign about the dangers of COVID. We have to stop treating it like a respiratory virus and make the public aware that it’s a multi system vascular virus with immune damaging capabilities
Doing even a few of those things would make a huge difference. Doing all of them would end the pandemic.
Get angry. Get loud. Demand better. Demand transparency.
Say that 20 million dead is not “mild”. That 900 dying every week in the U.S. is not “over”. That 400 million disabled will NOT be ignored.
#covidisairborne #covidisnotover #sarscov2 #longcovid #pandemic #cleanair #wearamask #disability #ableism #eugenics
Dr David Tuller Talk on "Bad Science, Bad Medicine: How Flawed Biopsychosocial Studies on ME, Long Covid and Related Illnesses Harm Patients" (2024)
YouTube link:
https://www.youtube.com/watch?v=nskeLpbVMHg
It would be great if more people could subscribe to our channel
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid @longcovid
YouTube link:
https://www.youtube.com/watch?v=nskeLpbVMHg
It would be great if more people could subscribe to our channel
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid @longcovid
- YouTube
Auf YouTube findest du die angesagtesten Videos und Tracks. Außerdem kannst du eigene Inhalte hochladen und mit Freunden oder gleich der ganzen Welt teilen.www.youtube.com
Thank you NYC for setting such a great example of public health messaging!
Respirators protect you from all kinds of airborne viruses - including Covid.
If you can’t afford one - check for a mask bloc in your area.
Make 2025 the year you up your mask game!
#maskup #CovidIsNotOver #covidisairborne #longcovid #publichealth
Respirators protect you from all kinds of airborne viruses - including Covid.
If you can’t afford one - check for a mask bloc in your area.
Make 2025 the year you up your mask game!
#maskup #CovidIsNotOver #covidisairborne #longcovid #publichealth
There's a long COVID intervention (drugs) clinical trial running in Toronto through UHN.
https://www.reclaimtrial.ca/
Email them to get on the clinical wait list.
#LongCovid #toronto
https://www.reclaimtrial.ca/
Email them to get on the clinical wait list.
#LongCovid #toronto
RECLAIM | COVID-19 Lingering Symptoms
RECLAIM (REcovering from COVID19 Lingering symptoms Adaptive Integrative Medicine) is a randomized trial comparing effectiveness of various treatments for lingering symptoms of COVID-19.Reclaim
If you spent the holiday traveling, socializing etc with zero covid mitigations… You probably don’t have food poisoning. Or jet lag. Or allergies.
Covid is surging. RSV is too.
For the sake of everyone else - please stay home. If you can’t - wear a respirator.
Some of us spent our holidays alone. Isolated because no one will take precautions
Many of us have necessary hospital appointments and/or in person needs in the New Year
We don’t deserve to be infected because you took risks & then deluded yourself into believing you were “fine”.
Wear the mask.
#covidisairborne #covidisnotover #longcovid #sarscov2 #ableism #disability #wearamask
Covid is surging. RSV is too.
For the sake of everyone else - please stay home. If you can’t - wear a respirator.
Some of us spent our holidays alone. Isolated because no one will take precautions
Many of us have necessary hospital appointments and/or in person needs in the New Year
We don’t deserve to be infected because you took risks & then deluded yourself into believing you were “fine”.
Wear the mask.
#covidisairborne #covidisnotover #longcovid #sarscov2 #ableism #disability #wearamask
#Physics Girl #DoingBetter after #LongCovid
I owe this YouTuber a lot. She educated people on physics. Took them to places.
More than 2 years ago she got really sick with Covid that soon became Long-Covid. Earlier messages from her [partner] she was barely alive, non responsive.
If you want to check out her channel:
-> Physics Girl <-
-> youtube.com/@physicsgirl <- And please do.
Now she gives a very happy sign of emprovement I'm happy to share:
"Hello from Dianna! - Two years in bed"
by physicsgirl
https://www.youtube.com/shorts/euCkKszuWDQ
Quote by PG:
"Nov 21, 2024
Here is a small update from Dianna herself! She hasn't been able to communicate directly here on Youtube for almost 2 years now. A quick hello and thank you!"
I owe this YouTuber a lot. She educated people on physics. Took them to places.
More than 2 years ago she got really sick with Covid that soon became Long-Covid. Earlier messages from her [partner] she was barely alive, non responsive.
If you want to check out her channel:
-> Physics Girl <-
-> youtube.com/@physicsgirl <- And please do.
Now she gives a very happy sign of emprovement I'm happy to share:
"Hello from Dianna! - Two years in bed"
by physicsgirl
https://www.youtube.com/shorts/euCkKszuWDQ
Quote by PG:
"Nov 21, 2024
Here is a small update from Dianna herself! She hasn't been able to communicate directly here on Youtube for almost 2 years now. A quick hello and thank you!"
- YouTube
Auf YouTube findest du die angesagtesten Videos und Tracks. Außerdem kannst du eigene Inhalte hochladen und mit Freunden oder gleich der ganzen Welt teilen.www.youtube.com
Today I heard the most disconnected justification for not masking
Someone told me their dad refused to mask because he wanted to “live his life fully”. He caught covid & died
This person genuinely seemed to believe that her Dad lived more fully than people who mask…because he died living the way HE wanted
Given they’re likely experiencing grief - I pushed back as gently as possible. I explained that you can do almost all activities while wearing a respirator - but you can’t live life if you’re dead.
There was zero recognition of the point I was trying to make. They stood their ground.
I don’t know how we reach people like that. They’re so entrenched in their beliefs that even losing a close family member wont shake their denial.
Because it’s an airborne virus - his choice likely harmed others.
Thats the reason I keep advocating. Your “freedom” to risk your health stops when it puts the lives of others at risk.
Perhaps you’re genuinely ok losing your life just to avoid wearing a mask - but don’t presume to make that decision for other people.
Masking is kindness. It saves lives.
#covidisairborne #CovidIsNotOver #sarscov2 #longcovid #wearamask #maskswork
Someone told me their dad refused to mask because he wanted to “live his life fully”. He caught covid & died
This person genuinely seemed to believe that her Dad lived more fully than people who mask…because he died living the way HE wanted
Given they’re likely experiencing grief - I pushed back as gently as possible. I explained that you can do almost all activities while wearing a respirator - but you can’t live life if you’re dead.
There was zero recognition of the point I was trying to make. They stood their ground.
I don’t know how we reach people like that. They’re so entrenched in their beliefs that even losing a close family member wont shake their denial.
Because it’s an airborne virus - his choice likely harmed others.
Thats the reason I keep advocating. Your “freedom” to risk your health stops when it puts the lives of others at risk.
Perhaps you’re genuinely ok losing your life just to avoid wearing a mask - but don’t presume to make that decision for other people.
Masking is kindness. It saves lives.
#covidisairborne #CovidIsNotOver #sarscov2 #longcovid #wearamask #maskswork
Cochrane, by dropping their planned review of exercise for #MECFS, disrespects the energy and time of those involved in that review AND leaves the existing review supporting exercise for ME/CFS and #LongCovid.
Our petition calls for its withdrawal,
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
Our petition calls for its withdrawal,
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
Women and an unusually healthy cohort at greater risk of long-Covid, HSE study suggests
"#LongCovid is more common in Ireland among women and people who reported doing regular exercise before their illness, according to a new report."
https://m.independent.ie/irish-news/women-and-an-unusually-healthy-cohort-at-greater-risk-of-long-covid-hse-study-suggests/a1050583513.html
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC @covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
#auscovid19
"#LongCovid is more common in Ireland among women and people who reported doing regular exercise before their illness, according to a new report."
https://m.independent.ie/irish-news/women-and-an-unusually-healthy-cohort-at-greater-risk-of-long-covid-hse-study-suggests/a1050583513.html
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC @covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
#auscovid19
Women and an unusually healthy cohort at greater risk of long-Covid, HSE study suggests
Long-Covid is more common in Ireland among women and people who reported doing regular exercise before their illness, according to a new report.Eilish O'Regan (Irish Independent)
New US research:
Neuroimaging markers of cognitive fatigue in individuals with post-acute sequelae of SARS-CoV-2 infection
https://www.sciencedirect.com/science/article/abs/pii/S0278262624001313
Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19
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Neuroimaging markers of cognitive fatigue in individuals with post-acute sequelae of SARS-CoV-2 infection
https://www.sciencedirect.com/science/article/abs/pii/S0278262624001313
Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19
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New from Canada/Ireland/UK/US:
“It’s a moving target”: Experiences of pacing to reduce symptom exacerbation among adults living with
#LongCOVID...an international community-engaged qualitative research study
https://www.medrxiv.org/content/10.1101/2024.12.11.24318864v1
Also relevant to #MECFS
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
“It’s a moving target”: Experiences of pacing to reduce symptom exacerbation among adults living with
#LongCOVID...an international community-engaged qualitative research study
https://www.medrxiv.org/content/10.1101/2024.12.11.24318864v1
Also relevant to #MECFS
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
“It’s a moving target”: Experiences of pacing to reduce symptom exacerbation among adults living with Long COVID – Results from an international community-engaged qualitative research study
Introduction Long COVID is a multisystem condition that negatively impacts daily function. Pacing is a self-management strategy to mitigate symptoms.medRxiv
Vaccination prior to SARS-CoV-2 infection does not affect the neurologic manifestations of long COVID
https://academic.oup.com/braincomms/advance-article/doi/10.1093/braincomms/fcae448/7920652
#CovidBrain #NeuroPASC @longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain
@covid19 #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver #auscovid19 @auscovid19
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https://academic.oup.com/braincomms/advance-article/doi/10.1093/braincomms/fcae448/7920652
#CovidBrain #NeuroPASC @longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain
@covid19 #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver #auscovid19 @auscovid19
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I hear your rant but I don't think the financial burden of having #LongCovid should be minimized.
I'm not sure how exactly, and with what data to show it, "anti-vaxxers" are a higher financial burden than Long Covid.
If you want to get real, and get to the root of the whole thing, it was the day the vaccine was released, and our trusted leader said "vax and unmask", that did more harm than any "anti-vaxxer" or supposed hoax and continues to.
I'm not sure how exactly, and with what data to show it, "anti-vaxxers" are a higher financial burden than Long Covid.
If you want to get real, and get to the root of the whole thing, it was the day the vaccine was released, and our trusted leader said "vax and unmask", that did more harm than any "anti-vaxxer" or supposed hoax and continues to.
"People's financial well-being is being affected by #LongCovid," Fazlul said. "That's something we should care about."
#Covid
https://www.cidrap.umn.edu/covid-19/new-data-highlight-financial-burden-long-covid
#Covid
https://www.cidrap.umn.edu/covid-19/new-data-highlight-financial-burden-long-covid
📢 From #MEAction:
"Support Keeping Telehealth – Take Action Today!"
https://www.meaction.net/2024/12/11/support-telehealth-take-action-today/
"Expanded telehealth coverage for Medicare is set to expire at the end of this year, December 31"
Call your elected official to ask them to continue the expanded telehealth coverage
(sample call script provided)
Please boost!
@disability @mecfs @longcovid
#USPol #Medicare #Telehealth #Disability #MEcfs #LongCovid
"Support Keeping Telehealth – Take Action Today!"
https://www.meaction.net/2024/12/11/support-telehealth-take-action-today/
"Expanded telehealth coverage for Medicare is set to expire at the end of this year, December 31"
Call your elected official to ask them to continue the expanded telehealth coverage
(sample call script provided)
Please boost!
@disability @mecfs @longcovid
#USPol #Medicare #Telehealth #Disability #MEcfs #LongCovid
Support Keeping Telehealth - Take Action Today! - #MEAction Network
Call or write your representatives using our easy-to-follow script!#MEAction (#MEAction Network)
If you’re dealing with Long Covid - there’s a chance you’re also dealing with MCAS and/or POTS/Dysautonomia.
They’re common comorbids and can have a devastating impact on quality of life.
New allergies? Alcohol intolerance? Dizziness? Fatigue? Fainting? Hives? Neuropathy? GI issues? Unexplained tachycardia or blood pressure swings?
These can all be caused by POTS, MCAS or a combination of both.
Mega thread of resources and guides below:
I was dealing with both of these conditions before the pandemic - and when the first Long Covid cases started popping up I remember thinking “I need to make sure I avoid Covid - it’s already causing POTS and MCAS so it might make mine worse”
I shielded as soon as I was able (and haven’t been unable to stop).
I had hope that given the sheer size of the problem - we would see accelerated research and have better treatments and/or a cure.
Instead we’ve seen an increase in dismissal and psychologizing - with many people reporting it’s HARDER to get a diagnosis now than before the pandemic.
We don’t have anything new to offer patients despite the huge increase in people with these conditions - and the few doctors willing to treat us have wait lists which have tripled in size.
Patients have to wait longer to see a doctor - and get shockingly little time with them.
Basically - we are truly on our own.
As a result patient support groups and message boards are increasingly becoming a lifeline for those newly diagnosed.
I remember how scared and lost I was at the beginning of my chronic illness journey - so I’ve spent the last few months writing guides to help patients dealing with MCAS & POTS.
My hope is they will serve as a resource for the newly diagnosed as well as for people who suspect they may be dealing with these conditions.
You will find explanations of how they impact the body, tips for obtaining diagnosis, treatment options, lifestyle adjustments and more.
I hate having to go searching for something when I’m feeling really sick - so I thought it might be helpful to include everything I’ve written in one mega thread people could bookmark or save.
With that - the guides! (One per post below)
🧵
#longcovid #pots #mcas #dysautonomia #covidisairborne # covidisnotover #sarscov2 #wearamask #MECFS #chronicillness #spoonie #pandemic
They’re common comorbids and can have a devastating impact on quality of life.
New allergies? Alcohol intolerance? Dizziness? Fatigue? Fainting? Hives? Neuropathy? GI issues? Unexplained tachycardia or blood pressure swings?
These can all be caused by POTS, MCAS or a combination of both.
Mega thread of resources and guides below:
I was dealing with both of these conditions before the pandemic - and when the first Long Covid cases started popping up I remember thinking “I need to make sure I avoid Covid - it’s already causing POTS and MCAS so it might make mine worse”
I shielded as soon as I was able (and haven’t been unable to stop).
I had hope that given the sheer size of the problem - we would see accelerated research and have better treatments and/or a cure.
Instead we’ve seen an increase in dismissal and psychologizing - with many people reporting it’s HARDER to get a diagnosis now than before the pandemic.
We don’t have anything new to offer patients despite the huge increase in people with these conditions - and the few doctors willing to treat us have wait lists which have tripled in size.
Patients have to wait longer to see a doctor - and get shockingly little time with them.
Basically - we are truly on our own.
As a result patient support groups and message boards are increasingly becoming a lifeline for those newly diagnosed.
I remember how scared and lost I was at the beginning of my chronic illness journey - so I’ve spent the last few months writing guides to help patients dealing with MCAS & POTS.
My hope is they will serve as a resource for the newly diagnosed as well as for people who suspect they may be dealing with these conditions.
You will find explanations of how they impact the body, tips for obtaining diagnosis, treatment options, lifestyle adjustments and more.
I hate having to go searching for something when I’m feeling really sick - so I thought it might be helpful to include everything I’ve written in one mega thread people could bookmark or save.
With that - the guides! (One per post below)
🧵
#longcovid #pots #mcas #dysautonomia #covidisairborne # covidisnotover #sarscov2 #wearamask #MECFS #chronicillness #spoonie #pandemic
WHO Director General Tedro’s opening remarks 12/10: “We cannot talk about COVID in the past tense. It’s still with us, it still causes acute disease and “#LongCOVID”, and it still kills.
On average this year, about 1000 deaths from COVID-19 have been reported to WHO each week – and that’s just from the few countries that are still reporting.
The world might want to forget about #COVID19, but we cannot afford to.”
https://www.who.int/director-general/speeches/detail/who-director-general-s-opening-remarks-at-the-media-briefing---10-december-2024 #press
On average this year, about 1000 deaths from COVID-19 have been reported to WHO each week – and that’s just from the few countries that are still reporting.
The world might want to forget about #COVID19, but we cannot afford to.”
https://www.who.int/director-general/speeches/detail/who-director-general-s-opening-remarks-at-the-media-briefing---10-december-2024 #press
Nearly 300 UK doctors, nurses & health workers with #LongCovid are suing the health service bc they weren’t given adequate protection during the pandemic.
They say their lives have been devastated by “severe health complications.” Many can’t return to work and are housebound.
https://www.context.news/socioeconomic-inclusion/uk-doctors-and-nurses-with-long-covid-to-sue-for-compensation #press
They say their lives have been devastated by “severe health complications.” Many can’t return to work and are housebound.
https://www.context.news/socioeconomic-inclusion/uk-doctors-and-nurses-with-long-covid-to-sue-for-compensation #press
UK doctors and nurses with long COVID to sue for compensation
Health workers who fell ill on COVID pandemic frontline sue employers as they battle life-changing disabilitiesEmma Batha (Context)
🇬🇧 UK doctors and nurses with long COVID to sue for compensation.
"Nearly 300 British doctors, nurses and other health workers with long COVID are suing the health service for compensation, saying they were not given proper protection during the pandemic"
Source: https://www.context.news/socioeconomic-inclusion/uk-doctors-and-nurses-with-long-covid-to-sue-for-compensation
@auscovid19 #LongCOVID
"Nearly 300 British doctors, nurses and other health workers with long COVID are suing the health service for compensation, saying they were not given proper protection during the pandemic"
Source: https://www.context.news/socioeconomic-inclusion/uk-doctors-and-nurses-with-long-covid-to-sue-for-compensation
@auscovid19 #LongCOVID
UK doctors and nurses with long COVID to sue for compensation
Health workers who fell ill on COVID pandemic frontline sue employers as they battle life-changing disabilitiesEmma Batha (Context)
NEW: VACCINES REDUCE #LongCovid RISK IN KIDS (incld >350K kids).
-adol 12-20 yrs: vax resulted reduced LC risk during Delta by 95% & during Omicron by 75%
-kid 5-11yrs, vax decreased LC risk 60% during Omicron. By: @jsm2334 & team
https://www.sciencedirect.com/science/article/pii/S2589537024005418 #press
-adol 12-20 yrs: vax resulted reduced LC risk during Delta by 95% & during Omicron by 75%
-kid 5-11yrs, vax decreased LC risk 60% during Omicron. By: @jsm2334 & team
https://www.sciencedirect.com/science/article/pii/S2589537024005418 #press
If you’re looking for resources to assist someone new to Long Covid, ME/CFS, POTS or MCAS - I’ve been slowly building guides that I hope will assist patients, caregivers AND healthcare workers who are willing to read them.
I’ve completed a three part series on MCAS and a separate three part series on POTS which I’ve compiled into a mega thread I will link below.
People have already provided great suggestions for a follow up series - including things like how to regulate temperature, how to handle dating and/or sex, how to discern which condition is driving which symptoms, how to talk to doctors in a way that will get them to understand, and how to cope with being a parent to a kiddo with these conditions.
If anyone has other suggestions - please reach out! I’m also working on a series about EDS which I hope will tie some of these topics together. As they say - when you can’t connect the issues think connective tissues!
Also - if you’re a parent to someone with any of these difficult to manage conditions and want to provide feedback, suggestions or contribute - please get in touch. I would love to connect!
https://zeroes.ca/@broadwaybabyto/113615351711064251
#longcovid #mecfs #pots #mcas #EDS #chronicillness #spoonie #covidisairborne #covidisnotover #disability
I’ve completed a three part series on MCAS and a separate three part series on POTS which I’ve compiled into a mega thread I will link below.
People have already provided great suggestions for a follow up series - including things like how to regulate temperature, how to handle dating and/or sex, how to discern which condition is driving which symptoms, how to talk to doctors in a way that will get them to understand, and how to cope with being a parent to a kiddo with these conditions.
If anyone has other suggestions - please reach out! I’m also working on a series about EDS which I hope will tie some of these topics together. As they say - when you can’t connect the issues think connective tissues!
Also - if you’re a parent to someone with any of these difficult to manage conditions and want to provide feedback, suggestions or contribute - please get in touch. I would love to connect!
https://zeroes.ca/@broadwaybabyto/113615351711064251
#longcovid #mecfs #pots #mcas #EDS #chronicillness #spoonie #covidisairborne #covidisnotover #disability
Broadwaybabyto (@broadwaybabyto@zeroes.ca)
If you’re dealing with Long Covid - there’s a chance you’re also dealing with MCAS and/or POTS/Dysautonomia. They’re common comorbids and can have a devastating impact on quality of life.zeroes.ca
This indicates that we should NOT expect LC rates to decrease over time as SARS2 mutates, because its fitness is contingent on immune interference that probably contribues to LC.
In other words it would be a LESS FIT virus if it did NOT cause LC. Water runs downhill; viruses do not evolve to become less fit.
#LongCOVID #COVID #COVID19 #CovidIsNotOver
@trendless
In other words it would be a LESS FIT virus if it did NOT cause LC. Water runs downhill; viruses do not evolve to become less fit.
#LongCOVID #COVID #COVID19 #CovidIsNotOver
@trendless
My mega guide to living with POTS/Dysautonomia is here!
I cover everything I learned the hard way over years of living with this condition.
Salt, fluids, compression, medication, mobility aids and all the lifestyle adjustments you can imagine.
Patients can wait years for a diagnosis - being gaslit and dismissed along the way. When they DO get diagnosed - they’re often not given much in the way of support or coping tools.
It can be devastating when you’ve spent years suffering and then assume you’re finally going to get the help you need.
Doctors don’t understand the condition very well - and as a result we learn a LOT from other patients and painful trial and error.
My hope is this guide can serve as a soft place to land and find support, tips and ways to cope and stay safe:
https://www.disabledginger.com/p/learning-to-live-horizontally-your
#pots #dysautonomia #chronicillness #spoonie #longcovid #MECFS #mcas #disability #accommodation #accessibility #covidisnotover #covidisairborne
I cover everything I learned the hard way over years of living with this condition.
Salt, fluids, compression, medication, mobility aids and all the lifestyle adjustments you can imagine.
Patients can wait years for a diagnosis - being gaslit and dismissed along the way. When they DO get diagnosed - they’re often not given much in the way of support or coping tools.
It can be devastating when you’ve spent years suffering and then assume you’re finally going to get the help you need.
Doctors don’t understand the condition very well - and as a result we learn a LOT from other patients and painful trial and error.
My hope is this guide can serve as a soft place to land and find support, tips and ways to cope and stay safe:
https://www.disabledginger.com/p/learning-to-live-horizontally-your
#pots #dysautonomia #chronicillness #spoonie #longcovid #MECFS #mcas #disability #accommodation #accessibility #covidisnotover #covidisairborne
Learning to Live Horizontally - Your Guide to All Things POTS
When you have POTS - being upright is a challenge. We deal with fatigue, tachycardia, dizziness, fainting and more. Adapting to living life horizontally can make symptoms more manageable.Broadwaybabyto (The Disabled Ginger)
Never underestimate the power of wearing a mask.
It’s an act of solidarity with disabled people.
It’s an act of resistance against governments trying to convince you the covid threat is over and that certain people are “expendable”.
It’s an act of compassion. You’re showing your unwillingness to be responsible for the death or disability of another person.
It’s self care. You’re protecting your health and the health of those around you.
We could have chosen to learn from the early period of the pandemic. We could have been excited about eradicating an entire strain of the flu - and adopted masking as a powerful public health tool.
Instead we made them political - and to this day people are willing to be repeatedly infected with Covid rather than do something different.
They cling to the narrative “we didn’t mask before Covid so why should we now?”
The answer is simple. When you know better - you do better.
We know Covid is a serious multi system virus that’s causing long term harm. We know a good respirator prevents catching or spreading it.
We need to adapt - and it’s not too late.
#covidisairborne #covidisnotover #sarscov2 #longcovid #wearamask #disability #ableism #cleanair
It’s an act of solidarity with disabled people.
It’s an act of resistance against governments trying to convince you the covid threat is over and that certain people are “expendable”.
It’s an act of compassion. You’re showing your unwillingness to be responsible for the death or disability of another person.
It’s self care. You’re protecting your health and the health of those around you.
We could have chosen to learn from the early period of the pandemic. We could have been excited about eradicating an entire strain of the flu - and adopted masking as a powerful public health tool.
Instead we made them political - and to this day people are willing to be repeatedly infected with Covid rather than do something different.
They cling to the narrative “we didn’t mask before Covid so why should we now?”
The answer is simple. When you know better - you do better.
We know Covid is a serious multi system virus that’s causing long term harm. We know a good respirator prevents catching or spreading it.
We need to adapt - and it’s not too late.
#covidisairborne #covidisnotover #sarscov2 #longcovid #wearamask #disability #ableism #cleanair
The Covid response has been to say - at every available opportunity - that “only the vulnerable” need to worry.
If someone dies or becomes disabled - the first question is almost never a compassionate one. It’s “how many comorbids did they have?”
People desperately wanted to go back to normal - so they accepted the narrative that THEY were safe and only those “other” people would become disabled and die.
First - it’s not true. Covid is a risk to everyone.
Second - you can’t decide to toss entire groups of people to the wayside and not have it impact your moral compass.
It may be subconscious - but it IS happening.
You’re being taught that it’s ok to harm people as long as they belong to an undesirable group. You’re being conditioned to believe you’re superior.
It’s not at all hard to see how this can pave the way for authoritarianism.
https://www.disabledginger.com/p/how-did-we-get-here-and-what-comes
#covidisairborne #covidisnotover #eugenics #ableism #discrimination #disability #longcovid #fascism #authoritarianism
If someone dies or becomes disabled - the first question is almost never a compassionate one. It’s “how many comorbids did they have?”
People desperately wanted to go back to normal - so they accepted the narrative that THEY were safe and only those “other” people would become disabled and die.
First - it’s not true. Covid is a risk to everyone.
Second - you can’t decide to toss entire groups of people to the wayside and not have it impact your moral compass.
It may be subconscious - but it IS happening.
You’re being taught that it’s ok to harm people as long as they belong to an undesirable group. You’re being conditioned to believe you’re superior.
It’s not at all hard to see how this can pave the way for authoritarianism.
https://www.disabledginger.com/p/how-did-we-get-here-and-what-comes
#covidisairborne #covidisnotover #eugenics #ableism #discrimination #disability #longcovid #fascism #authoritarianism
How Did We Get Here and What Comes Next?
Disabled people have been warning others for nearly 5 years that eugenicist Covid policies would lead to a rise of fascist, racist, bigoted, misogynistic hatred. It's here now. So what’s next?Broadwaybabyto (The Disabled Ginger)
"The dysfunction of the cells could be a phenotype predisposing to LCS, but we believe it to be rather a complication of the acute disease. Moreover, this may be a possible explanation for the virus reactivations (EBV, HHV6),59 the frequent Streptococcal tonsillitis,60 or upper airway infections of children with LCS observed in our praxis and worldwide with the more serious influenza or RSV seasons."
https://www.nature.com/articles/s41390-024-03731-1
#CovidIsNotOver #COVID #COVID19 #SARSCoV2 #neutrophils #LongCovidKids #LongCOVID
https://www.nature.com/articles/s41390-024-03731-1
#CovidIsNotOver #COVID #COVID19 #SARSCoV2 #neutrophils #LongCovidKids #LongCOVID
Long COVID syndrome in children: neutrophilic granulocyte dysfunction and its correlation with disease severity - Pediatric Research
Pediatric Research - Long COVID syndrome in children: neutrophilic granulocyte dysfunction and its correlation with disease severityNature
Maybe one of the most interesting things to me, as a lay person, in https://www.nature.com/articles/s41390-024-03731-1 is as I read this a lab Dx for Long Covid in children is doable and distinguishes cleanly from convalescent children without Long Covid symptoms (Figure 4: D, K, and I).
I read this Nature paper as absolutely puting to rest claims that children aren't getting LC or that it's post-2020 trauma and so on. There's been other evidence before but I don't remember other gaps that were so clean.
h/t a half dozen zeroes.ca and other fedisci folks
#CovidIsNotOver #COVID #COVID19 #SARSCoV2 #neutrophils #LongCovidKids #LongCOVID
I read this Nature paper as absolutely puting to rest claims that children aren't getting LC or that it's post-2020 trauma and so on. There's been other evidence before but I don't remember other gaps that were so clean.
h/t a half dozen zeroes.ca and other fedisci folks
#CovidIsNotOver #COVID #COVID19 #SARSCoV2 #neutrophils #LongCovidKids #LongCOVID
Long COVID syndrome in children: neutrophilic granulocyte dysfunction and its correlation with disease severity - Pediatric Research
Pediatric Research - Long COVID syndrome in children: neutrophilic granulocyte dysfunction and its correlation with disease severityNature
I worked pretty hard on this piece and was so pleased to have the brilliant @riotmuffin turn it into a zine that, in turn, has raised nearly £100 towards @sheffieldmaskbloc. What next? It's going to serve as the basis of a documentary! Stay tuned! https://www.mediaactivist.com/recovering-from-shock/ #COVID19 #CovidIsNotOver #CovidIsntOver #LongCovid #MaskUp #MutualAid #AntiFascism
Recovering From Shock: Antifascist Struggle in an Ongoing Pandemic
How the shock of the pandemic, and its mishandling, has for too long been exploited by right-wing interests.Jay Baker (MediaActivist)
‘I was in denial about it’: actor Matt McGorry on having #LongCovid .
“Long Covid has dramatically changed my life,” said McGorry, describing symptoms including debilitating fatigue, depression, dysautonomia, Raynaud’s disease & brain fog, which he called “a cute little name for brain damage”.
https://www.theguardian.com/wellness/ng-interactive/2024/dec/02/matt-mcgorry-long-covid #press
“Long Covid has dramatically changed my life,” said McGorry, describing symptoms including debilitating fatigue, depression, dysautonomia, Raynaud’s disease & brain fog, which he called “a cute little name for brain damage”.
https://www.theguardian.com/wellness/ng-interactive/2024/dec/02/matt-mcgorry-long-covid #press
Finishing mega article about POTS & Dysautonomia & feeling I’ve forgotten something
I tackle hydration, compression, lifestyle modifications, mobility aids, pacing, importance of rest, knowing your baseline and medications.
Anything I’ve missed? What do you wish you had known?
If you missed my introduction to POTS/Dysautonomia - it covers a lot of the bases. One reader took it to their doctor and it convinced them to order tests and pursue diagnosis!
https://www.disabledginger.com/p/living-life-upside-down-an-intro
#pots #dysautonomia #longcovid #chronicillness #spoonie #covidisairborne #disability
I tackle hydration, compression, lifestyle modifications, mobility aids, pacing, importance of rest, knowing your baseline and medications.
Anything I’ve missed? What do you wish you had known?
If you missed my introduction to POTS/Dysautonomia - it covers a lot of the bases. One reader took it to their doctor and it convinced them to order tests and pursue diagnosis!
https://www.disabledginger.com/p/living-life-upside-down-an-intro
#pots #dysautonomia #longcovid #chronicillness #spoonie #covidisairborne #disability
Living Life Upside Down - An Intro to POTS/Dysautonomia
I live my life horizontally thanks to a condition called POTS (Postural Orthostatic Tachycardia Syndrome). It's poorly understood, often misdiagnosed and can be devastating to quality of life.Broadwaybabyto (The Disabled Ginger)
#Covid spike proteins accumulate in the brain, stay there 4+ years, and causes long term neurological effects, rapid brain aging, #longCovid
https://medicalxpress.com/news/2024-11-covid-sars-cov-spike-protein.html
https://medicalxpress.com/news/2024-11-covid-sars-cov-spike-protein.html
Long COVID: SARS-CoV-2 spike protein accumulation linked to long-lasting brain effects
Researchers from Helmholtz Munich and Ludwig-Maximilians-Universität (LMU) have identified a mechanism that may explain the neurological symptoms of long COVID.Verena Schulz (Medical Xpress)
I feel like it's time for a new #introduction
My name is Florine, I live in the Netherlands. I might post in Dutch or English, I read German and (some) Portuguese as well. Until now I've been mostly boosting stuff I find interesting, beautiful or funny.
I'm worried about #ClimateChange and political upheaval around the world.
I love my cat, my family and friends, playing music, reading and learning new stuff.
I don't love having #LongCovid and I'm worried about the ongoing pandemic.
My name is Florine, I live in the Netherlands. I might post in Dutch or English, I read German and (some) Portuguese as well. Until now I've been mostly boosting stuff I find interesting, beautiful or funny.
I'm worried about #ClimateChange and political upheaval around the world.
I love my cat, my family and friends, playing music, reading and learning new stuff.
I don't love having #LongCovid and I'm worried about the ongoing pandemic.
Legal Advice for Chronic Illness Disability Claims
https://www.youtube.com/watch?v=hcfX2q6wCVA
Screenshot from MassME e-newsletter https://massmecfs.org/newsletters/909-2024-11-november-newsletter
#chronicillness #chroniclife #Spoonielife #Spoonie #MEcfs #CFS #PwME #LongCovid @mecfs @longcovid @chronicillness
@spoonies
@disability
https://www.youtube.com/watch?v=hcfX2q6wCVA
Screenshot from MassME e-newsletter https://massmecfs.org/newsletters/909-2024-11-november-newsletter
#chronicillness #chroniclife #Spoonielife #Spoonie #MEcfs #CFS #PwME #LongCovid @mecfs @longcovid @chronicillness
@spoonies
@disability
From The Sick Times:
“Don’t give up hope”: Long COVID advocates and researchers say crucial work will continue under Trump
https://thesicktimes.org/2024/11/26/dont-give-up-hope-long-covid-advocates-and-researchers-say-crucial-work-will-continue-under-trump/
@mecfs @longcovid
#LongCovid #MEcfs #Research #USPol
“Don’t give up hope”: Long COVID advocates and researchers say crucial work will continue under Trump
https://thesicktimes.org/2024/11/26/dont-give-up-hope-long-covid-advocates-and-researchers-say-crucial-work-will-continue-under-trump/
@mecfs @longcovid
#LongCovid #MEcfs #Research #USPol
“Don’t give up hope”: Long COVID advocates and researchers say crucial work will continue under Trump - The Sick Times
As incoming President Donald Trump has announced a growing list of top nominees who’ve denied science and public health, people with Long COVID are preparing for an administration likely to be less friendly for research and advocacy.Betsy Ladyzhets (The Sick Times)
This week’s article was a tough one - mainly because I’ve been in a horrific and unrelenting flare that’s prohibited me from writing about what I wanted to tackle.
I’ve had to put multiple pieces on the back burner because my brain fog and other symptoms were too severe.
My inner monologue turned very cruel - constantly berating and gaslighting myself for being unable to get the articles done.
It’s hardly a surprise - because we aren’t taught to rest. We’re taught to push. To hide our pain. To say we’re “fine” and smile no matter how much we’re suffering.
We’re taught that worth is tied to economic contribution. That we’re cogs in the wheel of capitalism and that if we aren’t contributing we have no value.
As a result we play through the pain. We ignore what our bodies need because we don’t know how to truly rest.
We are overwhelmed with the “coulda woulda shouldas”… three of the most damaging words to someone living with chronic illness.
When you’re disabled - you can’t push as hard as other people can. You need to learn radical rest.
My own war with the ‘coulda, woulda, shouldas’ looks a lot like this:
😞 You coulda had a better day today if you had just been smarter yesterday
😞 You woulda been more productive if you had just done this differently
😞 You shoulda seen this coming. You’re stupid. Why didn’t you prepare better?
😞 You coulda stopped this if you only tried harder
😞You woulda had your article published if you focused more
You SHOULDA known better. When will you learn?
My article is about how to recognize the warning signs of an impending crash, learn radical rest and most importantly - throw the “coulda woulda shouldas” away once and for all.
https://www.disabledginger.com/p/its-time-to-throw-away-the-coulda
#chronicillness #disability #disabilityrights #spoonie #pem #brainfog #radicalrest #pots #mcas #Dysautonomia
#mecfs #longcovid #rest #gaslighting
I’ve had to put multiple pieces on the back burner because my brain fog and other symptoms were too severe.
My inner monologue turned very cruel - constantly berating and gaslighting myself for being unable to get the articles done.
It’s hardly a surprise - because we aren’t taught to rest. We’re taught to push. To hide our pain. To say we’re “fine” and smile no matter how much we’re suffering.
We’re taught that worth is tied to economic contribution. That we’re cogs in the wheel of capitalism and that if we aren’t contributing we have no value.
As a result we play through the pain. We ignore what our bodies need because we don’t know how to truly rest.
We are overwhelmed with the “coulda woulda shouldas”… three of the most damaging words to someone living with chronic illness.
When you’re disabled - you can’t push as hard as other people can. You need to learn radical rest.
My own war with the ‘coulda, woulda, shouldas’ looks a lot like this:
😞 You coulda had a better day today if you had just been smarter yesterday
😞 You woulda been more productive if you had just done this differently
😞 You shoulda seen this coming. You’re stupid. Why didn’t you prepare better?
😞 You coulda stopped this if you only tried harder
😞You woulda had your article published if you focused more
You SHOULDA known better. When will you learn?
My article is about how to recognize the warning signs of an impending crash, learn radical rest and most importantly - throw the “coulda woulda shouldas” away once and for all.
https://www.disabledginger.com/p/its-time-to-throw-away-the-coulda
#chronicillness #disability #disabilityrights #spoonie #pem #brainfog #radicalrest #pots #mcas #Dysautonomia
#mecfs #longcovid #rest #gaslighting
It's Time to Throw Away the 'Coulda, Woulda, Shouldas' and Practice Radical Rest
When you're chronically ill you can't push your body the way non disabled people do. You have to learn to rest. There's few words more damaging to us than the 'coulda, woulda, shouldas'Broadwaybabyto (The Disabled Ginger)