mayalongcovid.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

I’m kinda blown away by all these TikToks of people showing up to Republican reps’ town halls & letting them have it over Musk/Trump/DOGE. It seems grassroots. If it becomes a lasting trend to go to town halls, shout down people who are lying to you, and post it online, we might all survive this.

submitted 17 hours ago • 74 comments

Right on

submitted 13 hours ago • 0 comments

@kaufmanmd.bsky.social and I scheduled our next live Q&A session. youtube.com/post/UgkxplE...

submitted 18 hours ago • 0 comments

Shoutout to all the incredible advocacy work @thereforme.bsky.social is doing in the UK to raise awareness about #ME & #LongCovid!!! Really excellent thoughtful advocacy moving the needle forward towards recognition, real treatments & cures!!! 👏👏👏

submitted 2 days ago • 1 comment

Betroffene von #MECFS haben mit der #LemonChallengeMECFS 🍋 eine Initiative ins Leben gerufen, die ins Bewusstsein rufen soll, was sonst oft gar nicht sichtbar ist. Dabei unterstütze ich gern. Denn solche Aktionen erinnern uns daran: Es geht nicht nur um Zahlen oder Diagnosen. Es geht um Menschen.

submitted 6 days ago • 92 comments

Kudos to those in Germany involved in the #LemonChallengeMECFS 🍋! Pretty fantastic to see the word spread there about ME and more and more people in power showing support for pwME!!! Keep up the awesome work! 👏👏👏 @katha1970.bsky.social

submitted 2 days ago • 2 comments

Medicaid is the main source of funding for aging and disability care, including home and community-based care. Medicaid is critical to the well-being of many in our community. Check out this Protecting Medicaid Toolkit organized by energy levels. docs.google.com/document/d/1... #pwME #Medicaid

submitted 2 days ago • 2 comments

Two medical education wins to share! The Anki Flashcards we created about ME/CFS & infection-associated diseases have been recommended by CDC on its new ME/CFS page for medical students! We have upcoming Reddit live Q & A on Feb. 24! H/T to #MEAction GA! Article: meaction.net/2025/02/20/m...

submitted 2 days ago • 1 comment

Dear #ME #LongCovid friends, here's a wonderful #JohnVsJonVsME @johnvsjonvsme.bsky.social dopamine boost by @mayalongcovid.bsky.social - Pedro Pascal as ME & LC infographics! (and with an excellent adaptation of the 'Dream Lover' lyrics) #GreatestMEdicalScandal #ValentinesDay #IACC #MedSky

submitted 3 days ago • 0 comments

THE TRUTH, IT STINGS

submitted 3 days ago • 1 comment

Belated #JohnVsJonVsME #GreatestMEdicalScandal Valentine’s Day 💘 #ME #MECFS #LongCovid Research is my Love Language Love to the #IACC community *Best full screen & sound for ME themed lyrics 🎧🎶 Part 1: “Dream Lover” Pedro Pascal as ME & LongCovid Research infographics #MedSky

submitted 3 days ago • 2 comments

Now we gotta find out if Pedro Pascal follows @scishow.bsky.social @mayalongcovid.bsky.social 🙏🏻

submitted 3 days ago • 1 comment

If you're wondering why a lot of what's here is stuff I've conveyed, I was interviewed for this episode of SciShow. #MECFS

submitted 3 days ago • 16 comments

Good to see a popular educational Youtube channel (SciShow) make a concise video on #MECFS and why exercise makes it worse (8 mins). Also includes a brief section on the PACE trial. youtu.be/wxSwYUennBA?...

submitted 3 days ago • 4 comments

UW researchers are looking for people with disabilities and/or chronic illnesses to join a participatory research project focused on using digital technologies to navigate care in the US. Learn more and/or enroll: infograph.venngage.com/pl/GkdlQ9mh6HY #pwME #research #disability #ChronicIllness

submitted 4 days ago • 1 comment

Appreciation post for @bhanlon15.bsky.social!!! 👏👏👏 An incredible #ME #LongCovid #NEISVoid advocate who keeps the community informed, boosts, & supports so many!!! Thank you for all you do!!! 🙌

submitted 5 days ago • 4 comments

People with ME, what meds have helped you most with sleep? I'm not having trouble, it's for something else. What meds for sleep were you offered that really didn't help and/or made sleep worse? If you'd rather DM just ask :)

submitted 5 days ago • 50 comments

Some of you are new follows, but may have seen this going super viral, a few years ago, yes this was ME! I wrote this to help one of my former students study for their microbiology final. The rest of my science-themed music is on all major streaming platforms. Search for Raven the Science Maven :)

submitted 6 days ago • 4 comments

The Sick Times: “Invivyd Chairman Marc Elia: The bureaucracy is killing people with Long COVID” “Political change is in the air these days, and in my opinion, it’s an opportunity to be heard more clearly…” thesicktimes.org/2025/02/14/i...

submitted 9 days ago • 1 comment

It’s a Love Fest! It’s #JohnVsJonVsME #ValentinesDay Edition. Time to start sharing your virtual valentines–telling @lastweektonight1.bsky.social @thedailyshow.com why you would LOVE for them to cover #GreatestMEdicalScandal 🧵 (MEme c/o @diatoma.bsky.social)

submitted 10 days ago • 3 comments

Check out our YT Unraveled: Understanding Complex Illness. Luckily none of those words are banned yet. www.youtube.com/watch?v=V4Uc...

submitted 10 days ago • 2 comments

Getting ready for #PedroPascal to represent #GreatestMEdicalScandal in #JohnVsJonVsME LoveFest This is an outstanding piece by Jamison Hill. Special love to the #ME #SevereME #MECFS #LongCovid Community youtu.be/uSueeafJgdQ?...

submitted 11 days ago • 2 comments

Getting ready for #PedroPascal to represent #GreatestMEdicalScandal in #JohnVsJonVsME LoveFest This is an outstanding piece by Jamison Hill. Special love to the #ME #SevereME #MECFS #LongCovid Community youtu.be/uSueeafJgdQ?...

submitted 11 days ago • 2 comments

Ready for #JohnVsJonVsME #ValentinesDay LoveFest? Here's a TOOLKIT w/ details, sample posts/MEmes & ways to create your own Valentines💝--telling your Jo(h)n why you think he should be the first to cover #GreatestMEdicalScandal! docs.google.com/document/d/1...

submitted 11 days ago • 1 comment

Here’s the TOOLKIT for the @johnvsjonvsme.bsky.social LoveFest. Have a browse out the MEme’s if you need a pick me up or some inspiration!

submitted 11 days ago • 1 comment

I HIGHLY recommend you take a look at the #ValentinesDay MEmes on the @johnvsjonvsme.bsky.social toolkit if your spirit needs a ‘pick me up’ ❤️💜💙! Choose the #GreatestMEdicalScandal #JohnVsJonVsME posts & MEmes you’ll share on Friday, and/or find inspo & tools to make your own MEmes! #pwME #MECFS

submitted 11 days ago • 0 comments

Join the LoveFest on February 14! #JohnVsJonVsME #ValentinesDay #GreatestMEdicalScandal MEme by @elizacharley.bsky.social ❤️ #MyalgicEncephalomyelitis #pwME #LongCovid #MECFS #IACC

submitted 11 days ago • 1 comment