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Beiträge, die mit MEcfs getaggt sind
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Thanks very much to David for his kind words on me in this. I have largely retired from writing papers, letters & e-letters and am very grateful to him for his ongoing work which takes a lot of ongoing commitment, plus dealing with many frustrating scenarios.
https://virology.ws/2024/11/13/trial-by-error-my-tour-of-ireland-through-wind-and-rain-slides-of-my-talk/
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC
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Thanks very much to David for his kind words on me in this. I have largely retired from writing papers, letters & e-letters and am very grateful to him for his ongoing work which takes a lot of ongoing commitment, plus dealing with many frustrating scenarios.
https://virology.ws/2024/11/13/trial-by-error-my-tour-of-ireland-through-wind-and-rain-slides-of-my-talk/
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC
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Trial By Error: My Tour of Ireland, Through Wind and Rain; Slides of My Talk | Virology Blog
By David Tuller, DrPH Last month, I took a quick speaking tour around Ireland at the invitation of the Irish ME/CFS Association. I first became acquainted w ...David Tuller (Virology Blog)
“If you’ve been fighting for Covid mitigations for the last five years - you more than likely saw this coming. It was painfully obvious when the great unmasking occurred that many people on BOTH sides of the aisle didn’t care about the “vulnerable”. Didn’t care about community or protecting their neighbours. Didn’t care about anything other than their own ability to go to brunch, travel, socialize and get ‘back to normal.’
I’m not saying people should have shuttered inside their homes forever. None of us are. But they should have kept masking. There was no reason to stop. Respirators are highly effective at stopping the spread of Covid. The vast majority of people CAN wear them. We have mask blocs all over the world to provide masks to people who can’t afford them. It’s a simple thing you can do to protect yourself and - perhaps more importantly - protect others.”
If you missed my latest - it’s about the U.S. election, disability rights, eugenics, fascism and how we got to where we are. Perhaps more importantly - it’s about what comes next.
https://www.disabledginger.com/p/how-did-we-get-here-and-what-comes
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #fascism #election2024
I’m not saying people should have shuttered inside their homes forever. None of us are. But they should have kept masking. There was no reason to stop. Respirators are highly effective at stopping the spread of Covid. The vast majority of people CAN wear them. We have mask blocs all over the world to provide masks to people who can’t afford them. It’s a simple thing you can do to protect yourself and - perhaps more importantly - protect others.”
If you missed my latest - it’s about the U.S. election, disability rights, eugenics, fascism and how we got to where we are. Perhaps more importantly - it’s about what comes next.
https://www.disabledginger.com/p/how-did-we-get-here-and-what-comes
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #fascism #election2024
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)
People spend their lives running from suffering. Doing whatever they can to avoid feeling pain. The idea of “forever suffering” is terrifying to them. I think this fear is behind a lot of the disdain we see directed at disabled people.
We remind others that suffering can be permanent. That it can’t always be outrun.
We exist in the grey. Our illnesses won’t kill us - but they also won’t ever get better. There’s no cure on the horizon. No “are you better yet?”
This reality scares the crap out of people.
As such - they pull away from us. They abandon us or treat us with such disdain that we walk away from them. The ones that stay often expect us to hide how sick we are. To plaster a smile on our face and say we’re “fine” so that they don’t have to feel uncomfortable.
When they ask how we’re feeling or if we’re “any better”… they don’t want to hear the truth. In fact - if you tell them the truth you could find yourself facing a lecture on “positive thinking” or how you just need to “try harder” and you will suddenly overcome your illnesses.
People are unable or unwilling to face the realities of chronic illness - so they make it harder for us to face it as well. They treat it like it’s our fault. Like we did something to become ill or like we could get better if we “really wanted to”.
They will push our boundaries, gaslight us and yes - put us at risk for covid. So this is your reminder that it is ok to set and hold boundaries. It’s ok to protect yourself. If someone won’t be there at your worst - they don’t deserve you.
https://www.disabledginger.com/p/we-dont-do-sick-if-you-cant-hide
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans
We remind others that suffering can be permanent. That it can’t always be outrun.
We exist in the grey. Our illnesses won’t kill us - but they also won’t ever get better. There’s no cure on the horizon. No “are you better yet?”
This reality scares the crap out of people.
As such - they pull away from us. They abandon us or treat us with such disdain that we walk away from them. The ones that stay often expect us to hide how sick we are. To plaster a smile on our face and say we’re “fine” so that they don’t have to feel uncomfortable.
When they ask how we’re feeling or if we’re “any better”… they don’t want to hear the truth. In fact - if you tell them the truth you could find yourself facing a lecture on “positive thinking” or how you just need to “try harder” and you will suddenly overcome your illnesses.
People are unable or unwilling to face the realities of chronic illness - so they make it harder for us to face it as well. They treat it like it’s our fault. Like we did something to become ill or like we could get better if we “really wanted to”.
They will push our boundaries, gaslight us and yes - put us at risk for covid. So this is your reminder that it is ok to set and hold boundaries. It’s ok to protect yourself. If someone won’t be there at your worst - they don’t deserve you.
https://www.disabledginger.com/p/we-dont-do-sick-if-you-cant-hide
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans
Family Abandonment During Covid Pandemic. They 'Don't Do Sick'.
A look at relationship dynamics, ableism and the importance of setting (and sticking) to personal boundariesBroadwaybabyto (The Disabled Ginger)
People are angry that hospitals are bringing back mask mandates due to COVID outbreaks.
Patients like me are angry that we have to risk infection to get medical care. Some of us have died due to hospital acquired COVID.
Masks make sense in hospitals - why oppose them?
I’ve yet to hear a decent argument against mask mandates in hospitals.
The people who oppose them are almost always the ones screaming about how strong and healthy their immune systems are - so theoretically they never spend any time IN a hospital. Why do they care?
Inevitably people just trot out the tired “if your mask works then no one else needs one”… which just highlights that they’ve never spent any significant time in the hospital.
If you’re sick enough to need the hospital there’s decent odds something might prevent you from masking.
Even if you CAN mask - if you’re admitted what do you do when you need to eat, drink or brush your teeth? What if you require oxygen, having vomiting or airway complications?
The responsibility to stay covid safe shouldn’t be left to the patient.
It’s cruel and unusual punishment.
Mandatory masks mean that patients are protected by those around them - which is how it should be.
No one should have to risk covid to get care - and the normalization of hospital acquired covid needs to stop.
If you’re someone who opposes masks in healthcare - or who doesn’t understand WHY they’re necessary - please read my plea to healthcare workers.
Vulnerable patients feel unsafe. Expendable. Terrified.
Needing the hospital is scary enough - we shouldn’t have to worry about forced infection too:
https://www.disabledginger.com/p/a-plea-to-maskless-healthcare-workers
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhe
Patients like me are angry that we have to risk infection to get medical care. Some of us have died due to hospital acquired COVID.
Masks make sense in hospitals - why oppose them?
I’ve yet to hear a decent argument against mask mandates in hospitals.
The people who oppose them are almost always the ones screaming about how strong and healthy their immune systems are - so theoretically they never spend any time IN a hospital. Why do they care?
Inevitably people just trot out the tired “if your mask works then no one else needs one”… which just highlights that they’ve never spent any significant time in the hospital.
If you’re sick enough to need the hospital there’s decent odds something might prevent you from masking.
Even if you CAN mask - if you’re admitted what do you do when you need to eat, drink or brush your teeth? What if you require oxygen, having vomiting or airway complications?
The responsibility to stay covid safe shouldn’t be left to the patient.
It’s cruel and unusual punishment.
Mandatory masks mean that patients are protected by those around them - which is how it should be.
No one should have to risk covid to get care - and the normalization of hospital acquired covid needs to stop.
If you’re someone who opposes masks in healthcare - or who doesn’t understand WHY they’re necessary - please read my plea to healthcare workers.
Vulnerable patients feel unsafe. Expendable. Terrified.
Needing the hospital is scary enough - we shouldn’t have to worry about forced infection too:
https://www.disabledginger.com/p/a-plea-to-maskless-healthcare-workers
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhe
A Plea to Maskless Healthcare Workers from Vulnerable Patients
If you see a mask - wear a mask. Better yet - wear a mask all the time and show us you understand that we're still IN a pandemic. We are depending on you to keep us safe - please don't betray that.Broadwaybabyto (The Disabled Ginger)
Happy #WritingMonth y'all!
Here's the start of the month status of my book. I've been working since May. As expected, I'm in a #MECFS Post-Exertional Crash due to celebrating Halloween/Segaki/Samhain, & am not able to write today.
However! I set my 21000 words goal based on the idea of 1,000 words x 21 days, and added it to my existing word count. I hope 21/30 days is frequent enough to build a habit, yet flexible enough to honor my chronic illnesses.
Data, for the data gods!:
Here's the start of the month status of my book. I've been working since May. As expected, I'm in a #MECFS Post-Exertional Crash due to celebrating Halloween/Segaki/Samhain, & am not able to write today.
However! I set my 21000 words goal based on the idea of 1,000 words x 21 days, and added it to my existing word count. I hope 21/30 days is frequent enough to build a habit, yet flexible enough to honor my chronic illnesses.
Data, for the data gods!:
This is the longest I’ve had a #sewing project on the go: 30 days so far! @sewing
I’m still recovering, albeit very slowly, after our landlord shut off the A/C for 14 days and sent me to the hospital. It’s been a long, tiresome month. #MECFS #SEID
I’ve gotten as far as putting binding on the t-shirt collar seam. Trying to sew while sick like this made me miss the binding right near the end, but thankfully chainstitches pull out easily. The second pass was much better! Sleeves next, eventually…
I’m still recovering, albeit very slowly, after our landlord shut off the A/C for 14 days and sent me to the hospital. It’s been a long, tiresome month. #MECFS #SEID
I’ve gotten as far as putting binding on the t-shirt collar seam. Trying to sew while sick like this made me miss the binding right near the end, but thankfully chainstitches pull out easily. The second pass was much better! Sleeves next, eventually…
From ME Research UK:
"Estimating ME/CFS prevalence in individuals with long COVID"
During the early phases of the COVID-19 pandemic, as the term ‘long COVID’ first emerged, Dr Anthony Komaroff raised a crucial question in an article:
"Will some people who get COVID-19 subsequently develop ME/CFS? … many people with ME/CFS say that their illness began with some kind of infection: a virus, a flu, a bad cold."
@longcovid @mecfs
#LongCovid #MEcfs #PostCovid #PASC #LongHaulers
"Estimating ME/CFS prevalence in individuals with long COVID"
During the early phases of the COVID-19 pandemic, as the term ‘long COVID’ first emerged, Dr Anthony Komaroff raised a crucial question in an article:
"Will some people who get COVID-19 subsequently develop ME/CFS? … many people with ME/CFS say that their illness began with some kind of infection: a virus, a flu, a bad cold."
@longcovid @mecfs
#LongCovid #MEcfs #PostCovid #PASC #LongHaulers
? for other disabled folks (esp w ME/CFS): How do you estimate spoons available for the day? Or do you?
I need a better way than “Do things until PEM, then one thing less.” Timeboxing stuff pomodoro style kinda helps but doesn’t factor how much I must:
• move my arms
• sit up
• stand up
• walk
• climb stairs
• lift >5 lbs
• focus mentally
• do emotional work
• travel
• be in crowds
…or combinations of above
ANY resource links, tips, recommendations?
#MECFS @mecfs
I need a better way than “Do things until PEM, then one thing less.” Timeboxing stuff pomodoro style kinda helps but doesn’t factor how much I must:
• move my arms
• sit up
• stand up
• walk
• climb stairs
• lift >5 lbs
• focus mentally
• do emotional work
• travel
• be in crowds
…or combinations of above
ANY resource links, tips, recommendations?
#MECFS @mecfs
I don't care what doctors say, I am NOT giving up on there being a cure - and treatments that are more than just activity diaries, which stress me out!
But I hate that this leaves me vulnerable to quackery. I know the supplement industry must do GREAT business out of #MECFS patients. Because our guts actually do work wrong. Argh. #NEISvoid
(People who believe I'd be happier if I just accepted my condition DNI.)
But I hate that this leaves me vulnerable to quackery. I know the supplement industry must do GREAT business out of #MECFS patients. Because our guts actually do work wrong. Argh. #NEISvoid
(People who believe I'd be happier if I just accepted my condition DNI.)