🚨 Call to action!
Help protect key ME/CFS language in the House Appropriations process.
The Senate included several major wins for the ME/CFS community in its FY26 funding bills. We need the House to ensure this language makes it all way through committee votes, full floor votes and the reconciliations process.
Please contact your house representative! You can use this automated toolkit to send email or call:
https://solvecfs.quorum.us/campaign/136258/
@mecfs @longcovid
Bravo. "Violet Affleck, the daughter of Ben Affleck and Jennifer Garner, delivered an impassioned speech in favor of clean air and masking to prevent the transmission of long COVID-19 in an address at the United Nations on Tuesday, Sept. 23." #LongCovid
Happy to see that Violet Affleck is still doing advocacy work for Long Covid! Many thanks to The Sick Times for this story ❤️
"Violet Affleck advocates for children with Long COVID, masks, and clean indoor air at United Nations event"
“It is neglect of the highest order to look children in the eyes and say, ‘We knew how to protect you, and we didn’t do it" 💯
#COVID #LongCovid #PASC #MEcfs #CovidIsNotOver #AirQuality #MaskUp
I cant believe this bill is about to get passed! https://abcnews.go.com/US/wireStory/north-carolina-bill-curb-mask-wearing-protests-make-110230926
It would criminalize mask-wearing in public even for medical reasons ... It's just unacceptable.. there's a change petition https://chng.it/6kf5XTsv6t and people we need to email tonight/before 9am Wed morning (5-15), this endangers us / violates rights! George.Cleveland@ncleg.gov; chris.humphrey@ncleg.gov; bill.ward@ncleg.gov; harry.warren@ncleg.gov; David.Willis@ncleg.gov
I've been working on this for quite some time, and now here it is at last - my latest piece, on how the shock of the pandemic, and its mishandling, has for too long been exploited by right-wing interests: https://www.mediaactivist.com/recovering-from-shock/ #CovidIsNotOver #CovidIsAirborne #LongCovid #AntiFascism
Vaccination prevents loss of brain hippocampus neurogenesis, loss of memory, accumulation of IL-1β, #LongCovid central nervous system hit in the mouse model
https://nature.com/articles/s41590-024-01868-z
Friends had a dinner for extended family last week. Every single person in attendance got infected with #COVID. That's from young children to grandparents. Yes, there is still a pandemic and this highly infectious disease can also result in incurable #LongCovid
"#LongCOVID & Chronic Fatigue [Syndrome]: The Similarities are Uncanny"
Great to see this article in Medscape which includes comments from numerous UK-based researchers and charity representatives
#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
This account will not put up w/ name calling.
Anything to do with the other party, whichever that may be, can be left at the door as well.
Lectures will fall flat.
I will ask nicely for you to stop the above but if you push, my spoons run out quickly and I will likely lose my shit, which also uses up excess energy I don't have spare of. That just pisses me off more. *SIGH* #LongCovid has done this to me as pre #Covid, I could spar until you drop or run away. Now? *waves hand dismissively*
I never thought I'd end up with a chronic illness where the most useful health advice comes from an old Vaudeville joke:
Patient: Doc, it hurts when I do this!
Doctor: Then don't do that!
Update on the "Teach ME, Treat ME" medical education campaign from #MEAction :
https://www.meaction.net/2024/09/04/teachme-treatme-we-cant-believe-these-numbers/
"We tallied up some numbers from our 'Teach ME, Treat ME' campaign to educate clinicians and medical students about ME, and the results are fantastic!
The campaign has been a herculean effort by #MEAction staff and our 16 incredible teams across the U.S and U.K., and we are beyond proud!"
@mecfs @longcovid
#MEcfs #LongCovid #MedEd #CME #HealthCare #MayoClinic #TeachMeTreatME
I finally got around to reading this and it's the perfect #covid #CovidIsNotOver #LongCOVID #COVIDisAirborne synopsis, #VioletAffleck blows me away again this year piece published at #Yale global health review , worth the read!!!! https://yaleglobalhealthreview.com/2025/05/18/a-chronically-ill-earth-covid-organizing-as-a-model-climate-response-in-los-angeles/
When I was 21…I was told I was likely infertile and that pregnancy could and probably would kill me. I was denied a tubal ligation and/or hysterectomy because I “might meet a man who wants kids”.
It was a horrifying look at how deep misogyny runs in medicine - and how little women are trusted to know their own bodies and make decisions for their health.
I eventually had the hysterectomy- but only once it became an emergency because I was bleeding to death and they couldn’t stop it. The surgery was more traumatizing and dangerous because I wasn’t afforded the time to adequately prep.
I’m grateful to have survived - and sharing my story in the hopes it helps other women feel less alone. I hope it challenges doctors and healthcare workers to think differently about how they treat women and realize that not ALL of us can become mothers (and not all of us WANT to either).
At the end of the day - a man wouldn’t have had these issues if he wanted a vasectomy. He would have been trusted to know his body. He wouldn’t have been treated like an incubator and I sincerely doubt many men are asked whether they’ve considered that they could meet their “dream woman” and she might be angry about their sterility.
There’s no stigma about the childless cat man.
https://www.disabledginger.com/p/pregnancy-will-likely-kill-you-but
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #chronicillness #keepmasksinhealthcare #endometriosis #abortion #womenshealth #reproductiverights #gynecology #misogyny #infertility #childlesscatlady #bodilyautonomy
@whn ’s October Issue of Kids’ Zone Magazine: Halloween Edition is out now! Featuring spooktacular #COVID -conscious activities, fun fall field trips, freaky fit tests, and MORE it is great for kids, teens, and young adults of all ages! Available for free download at https://whn.global/kidszone
#covid19 #StillCOVIDing #COVIDconscious #MaskUp #Respirator #LongCovidKids #LongCovid #CovidCautious
I just had my first doctor tell me to ‘take off your mask so I can see your pretty face.’
I was there for an issue with my FEET. There was absolutely no reason for me to remove my mask.
I don’t know how much of this was misogyny and how much was related to pandemic politics (ie perhaps this doctor resents having to mask)… but I was incredibly uncomfortable with his remark.
I declined - as politely as humanly possible - and the whole tone of the appointment changed. I didn’t even get a diagnosis - I was told that the issue on my ankles was ‘not as ugly as I think’ ( I didn’t think it WAS ugly) and sent on my way.
I waited 18 months for this appointment - and the ‘issue’ is likely related to my vEDS and possibly severe. Multiple other doctors have expressed concern but said I had to wait for a specialist.
When patients are treated this way - it causes harm. It causes a distrust of the medical system. I can’t just ‘get a second opinion’ when the first one took 18 months.
When I’m less angry I may write an article about this - because patients (especially female presenting) deal with this crap FAR too often.
In the meantime - this experience underscores why we must always have an advocate with us in healthcare settings. It shouldn’t be this way - but it is.
My article on how to be the best possible advocate for a disabled patient: https://www.disabledginger.com/p/how-to-be-an-effective-advocate-for
#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 #bullying #CleanAirClassrooms
I'm very excited that a #covid -conscious article I wrote "The Mosaic of Covid-Consciousness" got published in the British publication, the Psychologist, here in 2024! I think it is so important in spreading awareness to a wider audience. The field of psychology has an important place in our ongoing COVID-19 and #longCovid crises, and we all are a part of the solution. Please share it with your circles!
https://www.bps.org.uk/psychologist/mosaic-covid-consciousness
From The Sick Times:
"My Mom was disabled by ME, but I didn’t understand until I developed Long COVID. I wrote an apology letter to her."
Jacqueline E. Luciano describes how her experience with Long COVID led her to better understand her mother’s experience with ME decades earlier. This essay is the first essay in the new the Color of Long COVID series, supported by the Disability Visibility Project.
1/2
@mecfs @longcovid
Matt McGorry does a perfect, succinct Myth vs Fact on #Covid/ #longCovid , you can view the YouTube Short here:
I'm Long COVID Researcher. And I Have Long COVID.
"The only thing we know that makes long COVID worse is getting reinfected. That means I work very hard to avoid reinfection. Since I was infected while wearing an N95 mask and being vaccinated, I know that one-way masking is insufficient protection for me"
#LongCOVID @auscovid19
Source: https://www.miragenews.com/im-long-covid-researcher-and-i-have-long-covid-1418523/
Hey did anybody hear anything yesterday to "remember" or "never forget" the day that we entered the global pandemic called #Covid?
It's been 23 years and we still get bombarded with insistence that we never forget 9/11!!
But not one rememberance of Covid.
DEATHS:
7,090,776 - Covid
2,996 - 9/11
ILLNESSES RELATED TO:
65,000,000 - #LongCovid
45,200 - 9/11
If we had a 9/11 every day since March 11, 2020, the total deaths would still not be as many as the deaths from Covid.
🚨 On May 12, International ME Awareness Day, #MEAction will be sending out an SOS for ME/CFS and Long Covid 🚨
SOS = Save our support systems. Save our science. Save our society.
A protest will be held at the Capitol in Washington, DC, and folks can also join in from home
#MEAction encourages all folks with disabilities to join!
More details / toolkits here:
https://www.meactions.org/millionsmissing2025
Please boost! ❤️
@mecfs @longcovid
@disability
I think I've already posted this but it's worth re-posting:
"Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again"
"Budget cuts and the dismantling of federal agencies are making it harder for patients with long COVID and ME/CFS"
@mecfs @longcovid
Edit: added hashtag
💙 It's May 12th, International ME/CFS Awareness Day 💙
My ME/CFS onset was in Jan 1990
🚨 Many recent ME/CFS cases have been triggered by COVID 🚨
In this thread I plan to post about 3 main things:
1. My ME/CFS story (briefly)
2. Helpful resources for patients and clinicians
3. Advocacy options for patients & allies (friends/family) - mostly US based
1/n
@mecfs @longcovid
#MEcfs #LongCovid #PostCovid #Disability #DisabilitySOS #CovidIsNotOver #MillionsMissing #MEAwareness #WorldMEDay
🧵 "Two Households, Both Alike in Indignity: An Interview with Anne Ursu"
https://lithub.com/two-households-both-alike-in-indignity-an-interview-with-anne-ursu/
Anne Ursu is the author of Not Quite a Ghost, a middle grade novel about "an eleven-year-old, Violet, who comes down with a post-viral illness"
I'll post a few quotes in the replies.
1/n
@mecfs @longcovid
#MEcfs #PwME #LongCovid #PwLC #ChronicIllness #PostCovid #PostViral #MedEd
