I have enough followers on here (👋 💞) that I think it is worth a little thread on how I relate to social media and online conversations & try to cultivate community
I am a person, not an object. I have personal thoughts, feelings, experiences, a family, & a life. Angry interactions from strangers & esp those interested in exploiting me as An Example Of Some Battle of Yours are dehumanizing & will get blocked (e.g.: "this is why those Ex Twitter people should be banned by default")
Not everything I share is for everyone -- how could it be? Sometimes I make silly jokes, or sideways references; sometimes I might understand a word differently than you do or make a typo or don't finish a clause. I also have #LongCovid , which means managing my stress, fatigue, and exposure to threat is quite LITERALLY life and death for me.
I block anyone who reads into this as moral failing. I don't tolerate "you didn't mention x, therefore you must be evil and hate x" on social media.
(pay wall)
"Parents of children with #longCovid claim they have been accused of faking or exaggerating their child’s illness, leading to social services’ involvement and... court cases and the threat of the child’s removal from the home."
I think it is really important we speak out against this bill as it could be copy-catted in other states, and its just messed up, so I started an email campaign: TIME-SENSITIVE!: Join the email campaign to stop HB 237 from passing in NC House of Representatives! If passed, this bill will make it illegal to wear a mask in public even for medical reasons, more info at https://the-maskers-comic.yolasite.com/stophb237 We need to send these emails out ASAP!
"For some people, disabling symptoms lead to complete inability to work. In less extreme cases, “work instability,” which is a mismatch between patients’ functional abilities and the demands of their work, can threaten employment if not addressed."
"Children with #LC have a reduced VO2 peak […], abnormal cardiovascular efficiency (VO2/HR% pred), pathological VE/VCO slope […], and abnormally reduced slope of VO2 work" "48% of the LC patients had a suspicious phenotype for pulmonary hypertension."
Masks are now outlawed in North Carolina, among other reasons because cops want to identify people at political protests.
I recently got so angry when watching the protesters against Tesla near Berlin. They were wearing masks. Now you might think, that's a good thing. But at most anarchists gatherings here in Europe they never wear masks anymore. So they were wearing the masks for anonymity. If they use it for that reason, it will backfire and get outlawed.
Ever since i have #LongCOVID, one of the issues preventing me from going to protests is the fear of getting arrested. There's always a possibility of that. The idea of being thrown into a cell or a cop car and maybe forced to take off my ffp2-mask is a total nightmare.
People who NEED to keep wearing masks, because they are immuncompromised or chronically ill, do not have the possibility to wear masks as an act of civil disobedience.
I'm slowly realising that I probably have some mild #LongCovid
Since having covid (now had it twice since 2022): iron deficiencies, breathing problems, constant asthma, and now a sudden allergy to some foods apparently.
My partner and I have been careful throughout the pandemic but clearly not careful enough at times (twice each) since "opening up".
And though it could be far far worse, I feel pretty violated right now TBH.
"... how many people know COVID-19 infection can cause headaches and migraines weeks or months later? Or that it can cause fainting? Nausea? Heart attacks? Cardiac complications in adults and children? Embolisms? ADHD-like symptoms? Neurological issues? How many people are suffering the long-term sequelae of COVID-19 infection but not drawing the causal link and instead ascribing their new conditions to bad luck or aging?"
North Carolina bans medical masks (seriously), US/UK/NZ surging, covid 60% deadlier than influenza, weird new variant symptoms, US: no fall vax for uninsured, covid ripping through New Zealand schools, rAW MiLk eNTHusIaSTs, masking on the Fallout set, and more.
Heute mal wieder im Büro gewesen, wo der soziale Druck - ausgesprochen oder unausgesprochen - auf mich immer am stärksten wirkt. Übertreibe ich nicht vielleicht doch mit der Maskenkonsequenz?
Und dann kommt man nach Hause und liest das. 🤯
"Bis zum Jahr 2033 werden voraussichtlich eine Milliarde Menschen an Long Covid leiden – die meisten davon in den ökonomisch aktiven Altersgruppen."
Trial By Error Reporting on ME, ME/CFS, #longCovid, & "Medically Unexplained Symptoms"
A crowdfunding for David Tuller DrPH's important work on "debunking awful research". This will secure his academic position at Berkeley until December 31, 2024
New research from UK team:
Examining well-being and cognitive function in people with #longCovid and ME/CFS, and age-matched healthy controls: A Case-Case-Control Study
"Unfortunately, the newest widely circulating pathogen in the human population uses a broadly expressed ACE2 receptor to infect cells, meaning it can damage almost any part of the body."
"They want your ignorance and incur no cost if you are harmed by being repeatedly infected by COVID-19 or any other pathogen that might be surging in its wake."
Some pretty great talks at #UniteToFight2024 Day 1, but literally ALL the people giving talks are only active on #Twix and most of the discussion happens there?!
I could not go back to that platform for a million moniz, but we do miss out on a lot here.
Switching to Mastodon has been a very isolating experience for me. Almost the entire #LongCOVID community is still active on that horrible fascist website. I do find most information here eventually, but second hand.
Whenever i hear about severe cases of ME/CFS or Long COVID, i realize that i probably have a medium or even mild case. But then again, even such a medium or mild case can be so very debilitating. And all this with the sword of damocles hanging over it, that symtoms could always get worse.
No one wants this horrendous illness. Stop the gaslighting!
Went to a new trainer today as I continue on my sometimes terrifying #LongCovid recovery journey* and I'd messaged them before about my accessibility needs and she whipped open the garage door of the training space as I walked up and said "woo let's get that ventilation!!" 😭
So rare and amazing to be celebrated not treated like a huge imposition
*I don't have PEM I am extremely informed do not give me any medical advice