I can't do this. My autistic shit is all totally out of control because everything I need to manage it is not doable because of long covid stuff.
My meeting today cancelled and I was already at the bus stop and I literally cannot cope with anymore change 😭 I can't do this, and I don't know how to make it better because nothing I need to do to help can be done.
Danke an alle, die sich zwei Minuten Zeit nehmen, diese Petition für mehr Forschungsgelder für #MEcfs #LongCovid#PostVac zu unterzeichnen.
Danke an alle, die sich zwei Minuten Zeit nehmen, diese Petition für mehr Forschungsgelder für #MEcfs #LongCovid#PostVac zu unterzeichnen.
Dreading having to navigate busses for the first time today - with dogs, alone in Elle (my wheelchair), zero spoons already on the verge of meltdown from lack of sleep and the stress of this week.
Dogs are going for a trial run at the pet sitter before KinkFest, just for a few hours this afternoon to meet her and stuff.
This is such a great project by @vlrny.
https://turtlebower.org/about/
Many neurodivergent and disabled people of all ages struggle with housing and as many of us age we are faced with more and more isolation and the possibility of traumatic institutionalization.
Community living has the potential to save lives if done right - if it’s done for and by the people who live in that community and not by ableist people who want to hide away disabled people.
“In its current form, Turtle Bower is a seedling place–an old 3 bedroom farmhouse in a small town just outside of Guelph, Ontario renovated to add a wing with four wheelchair-accessible bedrooms as well as a massive shared kitchen built for co-living.
[…]
Right now we are inhabited by a mix of abled and disabled folks all just trying to get through. We want to be more; we want to be a collaborative co-living household that takes care of all within its borders.”
A vision of community support needs community funding (https://turtlebower.org/donate/)
#Guelph#Ontario#Canada#CoHousing #LongCovid#ActuallyAutistic#Spoonies #DisabilityJustice https://disabled.social/@vlrny/115035488756724553
This is such a great project by @vlrny.
https://turtlebower.org/about/
Many neurodivergent and disabled people of all ages struggle with housing and as many of us age we are faced with more and more isolation and the possibility of traumatic institutionalization.
Community living has the potential to save lives if done right - if it’s done for and by the people who live in that community and not by ableist people who want to hide away disabled people.
“In its current form, Turtle Bower is a seedling place–an old 3 bedroom farmhouse in a small town just outside of Guelph, Ontario renovated to add a wing with four wheelchair-accessible bedrooms as well as a massive shared kitchen built for co-living.
[…]
Right now we are inhabited by a mix of abled and disabled folks all just trying to get through. We want to be more; we want to be a collaborative co-living household that takes care of all within its borders.”
A vision of community support needs community funding (https://turtlebower.org/donate/)
#Guelph#Ontario#Canada#CoHousing #LongCovid#ActuallyAutistic#Spoonies #DisabilityJustice https://disabled.social/@vlrny/115035488756724553
I'm giving a free workshop and would like to include a "if you can, please donate to X" at the end.
Are there any US mutual aid groups for #MECFS #LongCovid & related conditions y'all recommend?
PNW and smaller, more direct impact preferred. Open to other recommendations as well!
(Mask blocs & covid competent groups are great but mostly in urban areas.)
Thank you!
I'm giving a free workshop and would like to include a "if you can, please donate to X" at the end.
Are there any US mutual aid groups for #MECFS #LongCovid & related conditions y'all recommend?
PNW and smaller, more direct impact preferred. Open to other recommendations as well!
(Mask blocs & covid competent groups are great but mostly in urban areas.)
Thank you!
One of the biggest misconceptions is that COVID is "like the flu". It was never "like the flu". Traditional upper respiratory diseases get into the respiratory system and then stop. They just aren't very good at getting into other cells. COVID, however, gets into cells via the ACE2 receptor, and there are ACE2 receptors in almost every cell.
https://www.donotpanic.news/p/why-covid-can-never-be-just-a-cold
In autopsy studies, they have found SARS-CoV-2 virus just about everywhere they have looked: lungs, heart, brain, kidney, gut, testicles, ovarian fluid, etc. It is true that in many of the research papers, they only look for RNA (because it's easy), which can't tell if it's infectious or just fragments of no-longer-dangerous virus. HOWEVER, there have also been a fair number of studies which have found infectious viruses in human tissues, including this one which found infectious virus in skull sawdust that came from sawing open skulls to do brain autopsies:
https://wwwnc.cdc.gov/eid/article/30/8/24-0145_article
Now, it's not necessarily bad that Public Health focuses on keeping the health care system running: somebody needs to keep it running!
What is bad is that there doesn't seem to be any other governmental department that is paying attention to keeping humans running smoothly I'm not even sure what department that would be.
Maybe the Ministry of Social Development and Poverty Reduction? That appears to be the ministry which pays disability/unemployment benefits. They should care about the long-term damage from COVID and its long-term effects... but perhaps the rate is still slow enough that it's not going to affect the current election cycle. 😕
I don't have data for BC or Canada, but here's a graph showing a steep increase after the start of the pandemic in the rate at which people in the US have been getting approved for disability.
· A drug originally developed for celiac disease was found to be safe and effective in treating a post-COVID syndrome in children
· “Dormant cancer cells are like the embers left in an abandoned campfire, and respiratory viruses are like a strong wind that reignites the flames,” said one of the authors of a new study in Nature
· An upcoming at-home clinical trial program for #LongCOVID, run by Scripps Research, is seeking participants
https://thesicktimes.org/2025/08/05/research-updates-august-5/
· A drug originally developed for celiac disease was found to be safe and effective in treating a post-COVID syndrome in children
· “Dormant cancer cells are like the embers left in an abandoned campfire, and respiratory viruses are like a strong wind that reignites the flames,” said one of the authors of a new study in Nature
· An upcoming at-home clinical trial program for #LongCOVID, run by Scripps Research, is seeking participants
https://thesicktimes.org/2025/08/05/research-updates-august-5/
Hey is anyone overseas able to help me get some 3M aura masks or similar that have the fabric type elastic straps?
#covid #masks#maskup #n95 #covidcommunity#longcovid #covidhelp #maskassistance
Living with #LongCOVID? 🛑 Stop. Rest. Pace. is key to managing #PEM
🔋 Think of your energy as a low-battery—use wisely:
• Stop early
• Rest often
• Pace everything
Rest can be silence, meditation, or 🤷♂️
More info 👉 emerge.org.au/stop-rest-pace-2
#LongCovidTreatment
Living with #LongCOVID? 🛑 Stop. Rest. Pace. is key to managing #PEM
🔋 Think of your energy as a low-battery—use wisely:
• Stop early
• Rest often
• Pace everything
Rest can be silence, meditation, or 🤷♂️
More info 👉 emerge.org.au/stop-rest-pace-2
#LongCovidTreatment
Fellow #spoonies#chronicPain and #longCovid folks, I need your voice!
We have one more thing to do before we can shout #turtleBower from the rooftops:
We need your comments (wherever in the world you are) on the Why This Matters page so our invisible struggles to survive are seen and heard.
There's such a depth of need for safe, healthy housing and light support, I want to use the site to highlight that need. Build something better.
Boosts appreciated. 💖
Get caught up: Good #Covid vaccine updates, US slams into its summer surge (rising fast nationwide), study: Covid “wakes up” cancer cells, Aotearoa #LongCovid studies now recruiting, UV light trial shows reduced infections, freaky new variant worries trackers, more:
Get caught up: Good #Covid vaccine updates, US slams into its summer surge (rising fast nationwide), study: Covid “wakes up” cancer cells, Aotearoa #LongCovid studies now recruiting, UV light trial shows reduced infections, freaky new variant worries trackers, more:
So I wrote a blog post about my experience of becoming chronically ill: https://blog.alexisbushnell.com/on-becoming-chronically-ill/ .
So I wrote a blog post about my experience of becoming chronically ill: https://blog.alexisbushnell.com/on-becoming-chronically-ill/ .
A space for Bonfire maintainers and contributors to communicate
