mecfs
#MEAction has announced their Severe ME Artists Project for 2024 in recognition of Severe ME Day on August 8th.
Anyone who identifies as having severe ME can participate. Artists can submit past artwork created before they got sick.
Submissions are due by July 25.
See link for full details:
https://www.meaction.net/2024/06/26/severe-me-artists-project-2024/
@mecfs
Video from today's Washington Post Live event, "The looming public health challenge of long covid"
https://www.youtube.com/watch?v=XcyzaV12bsg&t=1038s
Speakers include Jaime Seltzer, #MEAction’s Scientific Director, and patient advocate Chimére L. Sweeney, founder and director of The Black Long Covid Experience
(there are more speakers but I thought folks might recognize these two)
@mecfs
@longcovid
#LongCovid #PostCovid #MEcfs #PwME #PwLC #MyalgicEncephalomyelitis #PublicHealth
"#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
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!
Comic by howbabycomic.com. Perfect for people with chronic illnesses and disabilities
#chronicillness #mentalillness #autoimmune #chronicallyill #chronicillnesshumor #chronicillnessmemes #autoimmune #fibromemes #fibromyalgia #spoonie #mecfs #disability
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
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
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
In case you missed it:
Video (about 26 minutes long) which summarizes "the greatest medical scandal of the 21st century" - the treatment of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).
Video here:
https://www.youtube.com/watch?v=RiwX9Y0NbiQ
Full transcript on Medium here:
https://medium.com/@abrokenbattery/me-cfs-scandal-explainer-eb4c1bfb7464
📣 Reminder: #MEAction is giving away 2 copies (one paperback, one audiobook) of the book "Pillow Writers Anthology 1: Near-Life Experiences"
Their "Chronically Complex" podcast has extracts from the book:
https://www.meaction.net/chronically-complex-meaction-podcast/
Deadline for entry is December 15, winners will be selected the next day
I can't find an announcement on the #MEAction website but here's a link to what they posted on Bluesky:
https://bsky.app/profile/meactnet.bsky.social/post/3lbkjfa4w6c2t
@mecfs
Request from Phoebe Petrovic:
"Chronically ill/disabled/long covid-havers and #pwme:
I want to hear your stories.
Have you been denied care or adequate infection control protection while getting care? Are you a worker denied the ability to protect yourself with an N95? What barriers have you faced to equal treatment?
Please get in touch if you've experienced this in the USA. My contact information is in my bio."
https://bsky.app/profile/phoebepetrovic.bsky.social/post/3lcv4desaas2v
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
"The Arctic Plague Ship That Disabled A Best Selling Author"
https://www.donotpanic.news/p/the-arctic-plague-ship-that-disabled
"…a trip participant tested positive for COVID the day before the trip and was told by the organisers she was still welcome to come on the trip …
And now Isabel [Kaplan], who is 34 years old, has long covid. The disease has a vast array of presentations, and Isabel has the more serious version, her symptoms akin to those suffering from ME."
@longcovid @mecfs
"COVID-19 Triggers ME/CFS"
by Suzanne D. Vernon
https://batemanhornecenter.org/covid-19-triggers-me-cfs/
"…we found that among participants infected with SARS-CoV-2, the incidence of ME/CFS—defined using the Institute of Medicine (IOM) diagnostic criteria—was 15 times higher than pre-pandemic rates"
"531 participants met ME/CFS criteria, translating to a prevalence of 4.5% among those infected—nearly eight times higher than uninfected participants"
@mecfs @longcovid
From Ben HsuBorger at #MEAction:
"Why I Joined a Stand Up for Science Rally"
https://www.meaction.net/2025/03/12/why-i-joined-a-stand-up-for-science-rally/
"I have lived as an ME/CFS 'spoonie' for the past 20 years after I got a virus and never recovered. I’ve spent much of the past 10 years of my career advocating for ME/CFS research at the NIH"
"I don’t want to see the same scientific harms that have happened in the ME community become even more widespread across all of science"
@mecfs
News from #MEAction - planning for #MillionsMissing 2025 (May 12)
"If you are interested in organizing a protest, gathering in a park as a community or making art, please join one of our protest organizing meetings on Thursday, April 10"
Meeting 1: Thursday, 4/10, 12pm PT/3pm ET
https://us06web.zoom.us/meeting/register/EHwZzzubSpqIi31vM1VRNQ#/registration
Meeting 2: Thursday, 4/10, 3pm PT/6pm ET
https://us06web.zoom.us/meeting/register/2hriH4c1RU6VbSGbEBrjHA#/registration
Details:
https://www.meaction.net/2025/04/02/millionsmissing-2025-sending-out-an-sos/
@mecfs
#MEcfs #PwME #LongCovid #PwLC #MEAwareness #May12 #MyalgicEncephalomyelitis
#MillionsMissing 2025: Sending Out An SOS
Reminder: Two planning meetings for #MEAction Millions Missing 2025 (for ME/CFS Awareness Day - May 12) are scheduled for tomorrow!
https://www.meaction.net/2025/04/08/why-were-sending-out-an-sos-this-millionsmissing/
Here's how to sign up
Meeting 1: Thursday, April 10, 12 pm Pacific, 3 pm Eastern
https://us06web.zoom.us/meeting/register/EHwZzzubSpqIi31vM1VRNQ#/registration
Meeting 2: Thursday, April 10, 3 pm Pacific / 6 pm Eastern
https://us06web.zoom.us/meeting/register/2hriH4c1RU6VbSGbEBrjHA#/registration
@mecfs
🚨 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
Can't protest in person? Looking for a virtual event?
The COVID Long-Haulers Against Fascism group has an online meeting scheduled for Sat, May 3.
It starts at 1 PM Central (11 AM Pacific / 2 PM Eastern)
Details here:
https://www.mobilize.us/covidlonghaulersagainstfascism/event/783737/
I'm planning to be there! 🤞
#USPol #VirtualProtest #Protest #Disability #LongCovid #MEcfs #Resist
🚨 Call to action! 🚨
#MEAction has written a letter to NIH demanding full funding for the ME/CFS Research Roadmap
And they've asked folks to sign on to this letter:
https://airtable.com/appEwdLZCdtR0xwuv/pagMvv9RZYLxZiDFe/form
From the letter:
"NIH budget for ME/CFS is $13 million for fiscal year 2024/25– the lowest in comparison to its disease burden of any disease monitored by NIH"
Even if you don't sign please boost 🙏
Thank you! ❤️
@mecfs @longcovid
#MEcfs #PwME #LongCovid #NEISVoid #ChronicIllness #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