RE: https://disabled.social/@tomkindlon/116640578558884764
Quote:
"Long COVID did not create medicine’s discomfort with invisible illness. It exposed a preexisting pattern that millions of patients had been navigating for decades.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, dysautonomia, POTS — these conditions share remarkable clinical overlap with Long COVID, and they share something else too: a history of being dismissed, minimized, and inadequately researched"
RE: https://disabled.social/@ahimsa_pdx/116641683206006955
if there is one thing i’ve learned from the pandemic is that #LongCOVID isn't unique; that other viral infections ―especially #influenza― can leave us with long-term chronic illnesses after we’ve “gotten over” the infection.
got me thinking when did i start feeling achy all the time? am almost certain i developed #fibromyalgia after a bad #flu infection, turned into “walking” #pneumonia in the 1990s.
can we correlate the explosion of chronic diseases with the normalization of #flu infections?
Thread with a message from Solve ME:
"A proposed federal rule could let the government cancel active ME/CFS research mid-study when political priorities change.
The public comment window closes July 13.
Here's what you can do."
1/5
What if movement didn't have to be big to matter? Unbound is a film woven from 20 bodies, 20 stories, and 1 thread of connection.
Join us for the premiere on July 29th at 6:30 PM ET. https://www.eventbrite.com/e/unbound-global-premiere-live-qa-tickets-1990987249459
A reflection on my process for this film on my blog: https://liapas.com/2026/07/11/unbound-a-dance-film/
I'm continuing to offer my latest album for free for #DisabilityPrideMonth!
I live with #longCOVID, #fibromyalgia, and #MECFS.
I'm also autistic and suffer major depression.
I wrote this song grappling with what resistance and activism might look like given the limits my disabilities impose. I hope it may offer you some respite as we fight an increasingly cruel system.
https://arendleejessurun.bandcamp.com/track/youre-not-the-only-one-atlas-song
RE: https://vis.social/@lia_pas/116920216340348395
This short clip is beautiful!
I can't wait to see the whole thing 😊
"Why Is No One Talking About Long COVID?
— Attention has waned but patients are still suffering"
https://www.medpagetoday.com/opinion/second-opinions/122902
Pretty good basic info, but sadly ME/CFS is not mentioned even though COVID infections can trigger ME/CFS. The number of ME/CFS cases have increased since the pandemic.
See this Bateman Horne blog post ("COVID-19 Triggers ME/CFS") for more:
A new study published today in eBioMedicine, part of the Lancet portfolio and one of the most rigorous journals in clinical medicine, provides what researchers describe as the clearest physical evidence yet of what long COVID is doing to the brain. Using the same imaging technology used to detect early Parkinson’s disease, a team led by Jeffrey Meyer at the University of Toronto scanned the brains of 24 long COVID patients and 24 healthy matched controls. They were not looking for general inflammation or nonspecific brain changes. They were measuring one specific thing: the health of the neurons that release dopamine.
What they found was a measurable, consistent, and symptom-correlated loss of dopamine nerve terminals averaging 18 percent across the long COVID group.
"Unbound: Illness is not the end of dance"
A short film
(about 6 1/2 minutes)
"Twenty bodies. One thread of movement. Unbound is a short dance film created by individuals living with ME/CFS and/or Long COVID, exploring the tension between constraint and expression, stillness and vitality."
https://www.youtube.com/watch?v=mxK6UKtWuLc
For blind or visually impaired viewers there's an audio track with descriptions of the movements.
1/2
RE: https://vis.social/@lia_pas/116920216340348395
Unbound is now available to watch on YouTube! https://www.youtube.com/watch?v=mxK6UKtWuLc
RE: https://mastodon.social/@starryeyes/117468255284313812
Please share, if you can? I'm so deeply sorry & embarrassed. I'm desperate and not doing well without my medications. 😖
#NEISvoid #hEDS #chronicpain #marfansyndrome #EDS #MECFS #POTS #MCAS #AuDHD #actuallyautistic #ADHD #disabled #longcovid #mutualaid #spooniechat #chronicillness #crowdfund #emergencycrowdfund #tetheredcord #chiarimalformation #fibromyalgia #queercrowdfund #queermutualaid #povertycrowdfund #ihatethisiamsosorryomfg
I took extra antihistamines today, and tonight I don't feel like ass.
These two things might be related... 🤔
Dianna Cowern aka Physics Girl on getting "a very mild" case of COVID19, and becoming disabled with LongCOVID as a result.
It's been four years, Dianna is still disabled, and most doctors still don't accept LongCOVID as a real diagnosis, much less agree on a treatment.
Worth listening to (or reading the transcript, if that works better for you)
Many thanks to George Monbiot for remembering people with ME/CFS ❤️
"Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed"
"Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a shocking social crisis playing out behind closed doors"
#MEcfs #PwME #MyalgicEncephalomyelitis #LongCovid #ChronicIllness #Healthcare
PAIS protestwake 25 oktober in Den Haag
De aankondiging zelf staat op socials waar ik geen toegang toe heb mr deze LinkedIn post is ook zonder account te lezen: https://lnkd.in/p/er8XjF9W
@ovb69 bedankt voor het eerder delen op Mastodon.
@longcovid
#LongCovid #Coronaprik #Vaccinatie
#Gezondheidszorg #HealthCare #CovidIsNotOver
I just found out that the electrolyte supplements I rely on every day to remain upright are likely to become unavailable in the near future.
It took me the better part of a year to dial in a mix that gave me back some function. That the whims of capitalism are taking that sucks.
If you're a #pots / #longcovid sufferer who uses such things, I'd welcome suggestions for an alternative.
Double points for not containing sugar, tasting like a (further) punishment, or not costing an arm and a leg.
