It's officially hoodie season! Happy Fall Y'all! We have more hoodie options than ever - zip- up & pullover with tons of new designs. Which one is looking coziest to you? www.bonfire.com/store/meacti... We also have tees, sweatshirts, pants, mugs & more! #PwME #Spoonie #MECFS #LongCovid

The pillow writers group has published a new collection called Near-Life Experiences: The Pillow Writers Anthology, Issue 2. This ebook is available on Amazon. All proceeds go to #MEAction @meactnet.bsky.social www.s4me.info/threads/meac... #PwME #MEcfs #CFS

It is more important than ever to be practicing self-care. However, the traditional methods are sometimes not accessible to those with ME or other complex chronic illnesses. What are ways that you have found to practice self-care? What can you do today? #pwME #SelfCare #PwLC #spoonie

From @thesicktimes.org HHS coverage: “The makeup of the panels was not representative of the affected population to such a degree that the homogeneity appeared pointed and purposeful,” said #MEAction scientific director Jaime Seltzer. @exceedhergrasp1.bsky.social thesicktimes.org/2025/09/18/k...

Patient voices were heard! The ADDRESS-LC trial on Bezisterim is now open to those who have been living with #LongCovid for more than 2 years. We’re glad to see Biovie’s trial continues to reflect patient + scientific input! Find a trial site near you: addresslongcovid.com/sites/

Two more threads discussing today's HHS Long COVID Roundtable. #MEAction's Scientific Director @exceedhergrasp1.bsky.social bsky.app/profile/exce... And @motherjones.com @juliametraux.bsky.social bsky.app/profile/juli... #LongCovid #HHS #MECFS

Thread covering the HHS Long COVID roundtable. #LongCovid #MECFS

Many of us depend on #telehealth, but essential telehealth provisions expire on Sept 30 in the US. @meactnet.bsky.social has a script to call/email your representatives re a bill to preserve telehealth: www.meactions.org/telehealth Please advocate by Sept 29th! #MEAction #pwme #disabilityrights

Are you a medical provider in need of a concise but helpful CME? Are you a patient wishing your clinicians knew more about ME, aka ME/CFS? We have a CME for you but it is only available until Oct 1st. Sample language & links: docs.google.com/document/d/1... #MedEd #CME #MECFS #NEISvoid

Check out the newest anthology from @pillowwriters.bsky.social!!! We just heard some powerful samples from the anthology. A portion of your purchase goes to support #MEAction! US Amazon link: a.co/d/5zSkg8U UK Amazon link: amzn.eu/d/6fb8HeO Canada Amazon link: www.amazon.ca/Near-Life-Ex...

The WHO estimates at least 60 M people on Earth have #MyalgicEncephalomyelitis or #LongCovid. Anyone can get them. Extremely important thread on today’s hearings from Jaime Seltzer, Scientific Director of @meactnet.bsky.social and one of Time Mag’s Top 100 People in Science: #pwME #pwLC

We are starting!!! International turnout so far!

Today there will be a Long COVID Roundtable live by HHS (Health & Human Services). September 18, 2025 | 2:00 PM - 5:00 PM EDT "Invisible Illness: Leading the Way on Long COVID" hhs.gov/live/live-2/in… Livestream on HHS.gov, X, YouTube, and Facebook.#LongCovidid

Just announced: HHS Secretary RFK Jr. is hosting two "roundtable discussions" about Long COVID tomorrow at 2 p.m. ET. @thesicktimes.org will be covering the event and reactions from the Long COVID community. (Reach out if you'd like to send us comments during or after!)

This is today! Hope to see you there! #pwME #pwLC #spoonie #chronicIllness us06web.zoom.us/meeting/regi...

Are you in low power mode? Is it your 24/7 reality or maybe just a mode you have to visit frequently? www.bonfire.com/store/meacti... You are helping support our non-profit with each order! THANK YOU! #pwME #spoonie #ChronicIllness #MECFS #LongCovid #MCAS #Fibro #POTS

September is #SuicidePreventionMonth and we will be sharing resources and starting conversations across our social media. Talking about suicide isn’t harmful — silence is. We maintain a list of resources www.meaction.net/crisis-resou... Or go to findahelpline.com. @namicommunicate.bsky.social

“PLRC and other researchers from @meactnet.bsky.social and the National Academy of Medicine also helped early on with the trial. Based on PLRC’s scorecards to rate patient involvement, the study has a high degree of collaboration." #LongCovid thesicktimes.org/2025/08/05/t...

Great @thesicktimes.org article on 3 upcoming #LongCovid trials on JAK inhibitors. PLRC did patient engagement and helped shape 1 of the 3 here, REVERSE-LC (baricitinib) led by @weselymd.bsky.social — who also used our scorecards for patient engagement! thesicktimes.org/2025/08/05/t...

There is a what can you do list at the bottom of this article: t.co/EznZ9NoczS #pwME #MyalgicEncephalomyelitis

You are invited to join #MEAction for our latest Pillow Writers’ Salon TOMORROW - Thursday, Sept 18th at 11am PT/2pm ET/7pm UK. us06web.zoom.us/meeting/regi... This live Salon will feature readings by the authors of both comic and serious, stories, essays and poems. @pillowwriters.bsky.social

Join us TOMORROW for a call party to contact our elected officials about upcoming telehealth legislation - Sept. 17th at 12 pm PT/3 pm ET. Invite friends and allies! RSVP here: ow.ly/6Gnw50WNS1E Call script & more info: www.meactions.org/telehealth #pwME #Telehealth #MECFS #Disability

We’re proud to join #NationalVoterRegistrationDay on 9/16 as a Community Partner! Together, we’re celebrating democracy by helping every eligible American get registered & #VoteReady for 2025. Register or check your status: nationalvoterregistrationday.org/register-to-... #pwME #Disability

Hey, all in the #NEISvoid! The CME associated with the Mayo Clinic Proceedings Concise Clinical Review expires two weeks from today! You can reach out to your provider using our sample language & send thru your chart, or email to a medical society. More info below!

Take action today! Contact your doctor or nurse practitioner to let them know they have 2 more weeks to take the Mayo Clinic Proceeding CME on ME/CFS. Sample messaging: docs.google.com/document/d/1... Thank you! #MedEd #pwME #MECFS #CME Thank you to @exceedhergrasp1.bsky.social!

Excited to be reading at the @pillowwriters.bsky.social salon this Thurs, Sept 18 @ 11am PT / 2pm ET Register: us06web.zoom.us/meeting/regi... This salon celebrates the release of the second issue of The Pillow Writers Anthology, avail here: a.co/d/7EBcelQ Proceeds benefit @meactnet.bsky.social

#MEAction’s executive director Laurie Jones brings you some important activism updates! For those unable to watch video, please see thread below for updates. #pwME #MyalgicEncephalomyelitis #MECFS #longCovid #NIH #telehealth #Medicaid #ProtectMedicaid

#telehealth legislation expires (AGAIN) in the US at the end of this month (Sept 25) If it is within your envelope, join #MEAction for a call party Wed, Sept 17th @ 3pmET/12pm PT to contact your elected officials. Help us tell Congress how vitally important Telehealth is to our Community

Are you in low power mode? Is it your 24/7 reality or maybe just a mode you have to visit frequently? We have so many great new items & designs! Order today! www.bonfire.com/store/meacti... #pwME #MyalgicEncephalomyelitis #spoonie #ChronicIllness #MECFS #LongCovid #MCAS #Fibro #POTS #disability

The new designs for #MEAction are inspired! A super talented volunteer, @hospmom.bsky.social, created most! (Woot woot Jess) Check out the new sayings & products!

Got a wee bit of exciting news. When well enough, I'm part of an international group of writers. Our second anthology has just been published. All proceeds go to @meactnet.bsky.social I'll remind you all later that this would make an ideal C-word present 😁 #LifeWriting #ME/CFS amzn.eu/d/8kZ5vCk

The second Pillow Writers Anthology is now available on Amazon. All profits to @meactnet.bsky.social Congratulations to all involved.

Check out some of Scientific Director's Jaime Seltzer's favorite new & classic designs in our store in thread below! What is speaking to you? See any items to add to a wishlist? Check out all new & returning items here: www.bonfire.com/store/meacti... #spoonie #NEISvoid #MECFS #LongCovid

New merch! I’m wearing the joggers rn and they’re soooooo comfy. Zip up hoodie is also a favorite of mine!

We have so many amazing new designs and items available in our store! www.bonfire.com/store/meacti... Ready for fall? We have hoodies, sweatshirts, & joggers galore! Want a hot cuppa? We have a mug for that! Most designs were created by volunteer @hospmom.bsky.social. Thank you, Jess! #pwME

Join us next week for a call party to contact our elected officials about upcoming telehealth legislation- Sept. 17th at 12 pm PT/3 pm ET. RSVP: us06web.zoom.us/meeting/regi... Ready to take action today? Sample script: www.meactions.org/telehealth #pwME #disability #Telehealth #LongCovid #MECFS

I have ME/CFS from Long Covid. I’ve found some help/relief from experts at Yale New Haven’s LC clinic, which is a 5hour round trip from home. My next appointment will exhaust me for a week, but because of telehealth restrictions I need to drive there to see my doctor. You can help people like me 👇🏼

Have you called your Congress members about telehealth? Call script: www.meactions.org/telehealth ​​ Essential telehealth provisions are set to expire on Sept. 30th. Call party Sept 17th 3 pm ET. us06web.zoom.us/meeting/regi... #Telehealth #pwME #MECFS #LongCovid #disability

The two-day RECOVER-TLC workshop on new #LongCOVID clinical trials has concluded. You can read our live-blog of every session from the workshop at The Sick Times: bit.ly/4giPmAi

2) Concise Clinical Review, Mayo Clinic Proceedings, with CME: www.mayoclinicproceedings.org/article/s002... 3) IACC flashcards for medical students, Anki: app.ankihub.net/decks/0991ce...

Talking about how there isn't enough medical education in IACCs, clinicians are paralyzed by not knowing what to do. Reminder! 1) Pacing Guides (adult, peds, clinical versions) www.meaction.net/pacing-and-m...

The Break: Wild how many people found our materials on social media-- one person said, "can I thank you?-- you explained ME to me" 😭 One person said the Pacing Guide saved their kid. www.meaction.net/pacing-and-m...

It is #DisabilityVotingRightsWeek! We are excited to partner in this each year. One of the most important things to do after registering to vote is to make your voting plan - do this for each election! Check out @aapd.com's make a plan document available in multiple languages: bit.ly/REV-UP-Plan

Follow along with #MEAction Scientific Director Jaime Seltzer in the thread below! #RecoverTLC #pwME #LongCovid #pwLC

Hey, y'all! Covering this afternoon at RECOVER TLC about drug development for #LongCOVID. 🧪 Follow along to hear about the talks from late AM, afternoon today

RECOVER TLC clinical trials should include subgroup tracking and analysis for ME/CFS (using IOM criteria), POTS & other forms of dysautonomia, and MCAS. We joined several orgs in signing a letter sent to RECOVER TLC leadership. Letter: ow.ly/nFUa50WU60F #LongCovid #pwME #NIH

Hey, y'all, we appear to be experiencing unpredictable issues with our domain-related emails as well (some stuff is going through; others are not.) If we don't respond to you, text if you can or wait for the "all clear" from us that all is up again.

RECOVER-TLC 2nd annual workshop goals: - Update community - Solicit community feedback on key aspects of TLC- intervention selections, protocol concepts/design, collaborations. -Continue to highlight opportunities for additional clinical trials #LongCovid #RecoverTLC #pwME

Anyone else up and ready for RECOVER-TLC 2nd Annual Workshop: Pathways to Treatments? Perhaps making a hot cuppa or sipping on electrolytes? Our executive director, Laurie Jones, is! Register: ow.ly/lsTg50WTPG7 #pwME #LongCovid #MECFS #NIH

Pathways to Treatment, the 2nd Annual RECOVER-TLC Workshop, starts tomorrow- September 9-10. It offers both virtual & in-person attendance. There is still time to register to attend virtually. ow.ly/KNSf50WTyt1 #LongCovid #pwME #MECFS #NIH