Watch now! The recording is available for our 2025 Annual Meeting featuring MIT Research Scientist, Beth Pollack. www.youtube.com/watch?v=15WR... #massmecfs #mecfsreseach #longcovidreseach #chronicillnessresearch #invisibleillnessresearch

Interested in ME/CFS research? Want to do a PhD with @aryback.bsky.social, @avakhamseh.bsky.social, @sjoerdvbeentjes.bsky.social & @cgatist.bsky.social? Then apply for a *funded* Future Medicine PhD Fellowship. See: www.findaphd.com/phds/project... Please contact us to discuss before applying.

This year has been heavy—political whiplash, uncertainty, and real harm for our community. #MEAction is here, advocating on the ground. Remember, HOPE is a sweet rebellion. #MEAction is a lantern in the darkness. We can only continue our work with your support. www.meaction.net/lantern-in-t...

If you didn’t watch the third and last day of the #ICanCME2025 Conference for ME/CFS, here’s the live tweeting stream by @spichaksimon.bsky.social. Thanks, Simon, and thanks to @icancmeresearch.bsky.social for such a brilliant conference.

At the #ICanCME2025 conference today! Sabrina Poirier & Maeghan Taverner's intros blew me away. ~Acknowledging labor from people with lived experience ~Setting out expectations ~Moment of silence for those we've lost This is what a conference designed by people with lived experience looks like 🧪

@Medical professionals and researchers: The American Society for Parenteral and Enteral Nutrition is seeking topic suggestions for Malnutrition Awareness Week 2026. Would be great to see something on malnutrition in severe ME. @meactnet.bsky.social @swastrosarah.bsky.social @janetdafoe.bsky.social

A new analysis shows that no evidence exists for using graded exercise therapy for #MECFS - an issue that has come to the forefront again with #LongCovid research, reports @medscape.com. Read the full Medscape article here: wb.md/4oWpDRk

Today is the last day of the #ICanCME2025 Conference. We will be talking research design today! Common mistakes, gaps in knowledge, tools we need to create, opportunities for increased diversity and inclusion, hoe to increase accessibility in research, why patient partnership matters, and more!

We are excited and ready for day 2 of @icancmeresearch.bsky.social! #MEAction’s Scientific Director, Jaime Seltzer @exceedhergrasp1.bsky.social, is speaking soon! #ICanCME2025 #pwME #MECFS

Thank you to all the caregivers. 💙 Depending on where we live, social and medical supports for PwME can be hard to get, especially for those who are homebound or bedbound. Some live in complete isolation. The care given to PwME is life-changing. #disability #healthcare #MillionsMissing #MECFS

Love seeing our Still Sick Still Fighting showing up at the @icancmeresearch.bsky.social conference! Thank you, @sabrinapoirier.bsky.social! #ICanCME2025 #StillSickStillFighting #MyalgicEncephalomyelitis #MECFS #LongCovid Find tees here: www.bonfire.com/store/meacti...

Joining day 1 of the ICanCME Canadian Collaborative Conference on Myalgic Encephalomyelitis (ME). Huge shout-out for the respect for lived experience! Wonderful start! #ICanCME2025 #NothingAboutUsWithoutUs @icancmeresearch.bsky.social, applause to planning team!

November is National Family Caregiver Appreciation Month. #MEAction is bringing you two powerful webinars with Kim Moy and Denise Lopez-Majano to honor and support caregivers in our community. Caregiver Wisdom and #MEAction will be sharing more resources throughout the month as well! #caregiver

Please join us is sending a big thank you & good luck to Danny Smith! Danny is running the Philadelphia Marathon on November 23rd to raise money and awareness for ME/CFS and Long COVID. Danny has kindly chosen #MEAction to receive funds. meaction.funraise.org/fundraiser/d... #MECFS #LongCovid

#ICanCME2025 is happening this week! This was an initiative driven by people with ME and their loved ones with the support of many along the way! We’re so thankful for everyone’s support so far. And please be patient with us this week if we run into any issues. 🤞💙

#MEAction "2nd Annual RECOVER-TLC Research Workshop: A summary" www.meaction.net/post/2nd-ann... Discussion of the National Institutes of Health (NIH) 2025 RECOVER-TLC Workshop A recording of the full workshop is available online: www.youtube.com/playlist?lis... #LongCovid @meactnet.bsky.social

Today is the day after Halloween & this pumpkin is not scary ... Not like Medicaid cuts are scary for millions of Americans - they're life and death. #savemedicaid #aca @meactnet.bsky.social

November is National Family Caregivers Month. #MEAction is bringing you 2 powerful webinars! We will also be sharing social posts & resources focusing on caregiving. Webinar 1: Nov. 16 at 3 pm ET ow.ly/aN5G50XlbZc Webinar 2: Nov. 22 at 3 pm ET ow.ly/JZis50XlbZg #Caregiver #PwME #MECFS

They say you don't know what you've got til it's gone. If you don't want to envision a future that doesn't #SaveMedicaid and the #ACA, join us in contacting your Congressperson. Tell them only they can save American Healthcare! @meactnet.bsky.social

TeamBlueZoo's cutest member protests for Healthcare reform Things are so scary, that no dressing up was required Because the facts are the facts & they look dire Affordable health care (ACA) has expired #SaveMedicaid #ADA @meactnet.bsky.social

Don't let the grim reaper steal your health insurance! CALL your Congress Member and tell them to fight back against Medicaid cuts + ACA Premium increases. Congress is tackling these very issues during the govt shut-down - they need to hear from YOU! See our call script 👇.

This is a very SCARY time! We are people with ME/CFS & Long COVID that stand against the Medicaid cuts + ACA Premium increases. $1trillion in Medicaid cuts will harm millions. ACA premium hikes will steal affordable healthcare from tens of millions. Contact Congress: www.meaction.net/medicaid #ACA

Creepy baby me says....Congress stop playing tricks with my healthcare! #MEAction's Ben HsuBorger shares his self-proclaimed creepy baby photo to help spread the word that right now is a scary time! Contact Congress today! Tell them we do not accept this HealthSCARE! www.meaction.net/medicaid

It’s Halloween-time, but we shouldn’t actually be living in a horror movie. Congress is fighting over healthcare cuts that will make access to medical care a nightmare for working families, small businesses & people with disabilities. Call Congress: www.meaction.net/medicaid #SaveMedicaid #ACA

Please check your spam or junk folders for an email from ICanCME if you haven’t received your link yet for part 2 of the conference registration. :) Also, we had some missing emails and some that were rejected for being written incorrectly (missing the @ sign for example).

This is a blood-sucking nightmare. But we can get out of it together. Our government needs to hear from us! Save #ACA. #SaveMedicaid. @MEActNet Thanks to our executive director, Laurie Jones, & her daughters for joining in! Contact Congress: www.meaction.net/medicaid #pwME #Disability #LongCovid

Let’s be clear. If the federal government doesn't make changes to health care during this shutdown, then a lot of Americans WILL lose access to our healthcare as we know it. We are joining in coalition with other orgs aimed at protecting Medicaid in FLIPPING the Narrative. We need your help!

We just finished the amazing workshop with Marisa Renee Lee focusing on grief & chronic illness. At least 7 countries were represented & we had an amazing time together. We touched on the importance of finding joy & taking care of ourselves in the workshop so I thought I would add this reminder!

Starting in about 10 minutes! See you soon! #pwME #MyalgicEncephalomyelitis #LongCovid #MECFS #Grief

Great work from Rachel Fairbank on the winding story of metformin for #LongCOVID at @thesicktimes.org. Quotes from @jencurtinmd.bsky.social, Rachel Hall Clifford, @chromatowski.bsky.social, Carolyn Bramante, Ed Mills, Melissa Mazur & myself. thesicktimes.org/2025/10/28/m... #MedSky

Join us tomorrow- Oct. 28th at 3 pm ET for a virtual workshop! Get your ticket today. www.meaction.net/event-detail... Grief and complex chronic illness go hand in hand. We are excited to have Marisa Renee Lee bring her knowledge to our community. #pwME #Grief #MECFS #LongCovid #ChronicIllness

• Pacing, management and treatment guides for ME and LC, from @patientled.bsky.social x @meactnet.bsky.social, and ME/CFS Clinicians Coalition • Essay on why doctors must learn to communicate better with patients with complex chronic disorders from @ubuffalo.bsky.social

Does your doctor need more info on Long COVID? Our new webpage features resources made FOR doctors, BY doctors! longcovidjustice.org/providers

It’s POTS awareness day—a blood flow problem common after Covid. POTS can be subtle—I often wonder how many people who feel rundown, anxious or distracted have this treatable condition. Main criteria is heart rate going up >30bpm when going from laying down to standing—smthg you can check at home!

Sometimes we all need a reminder that we are kicking ass! www.bonfire.com/store/meacti... Maybe we do not feel very kickass when we are just trying to survive but we know that takes unimaginable strength. Thank you to @hospmom.bsky.social for this design! #pwME #MECFS #Spoonie

Action Alert! This Halloween is scarier than ever. If the federal government doesn't make changes to health care, then a lot of Americans WILL lose access to our healthcare as we know it This is grim - but it doesn’t have to stay that way. Join us & fight back. ow.ly/RWVa50XglPK #pwME #Medicaid

Grief and complex chronic illness often go hand in hand. Join us on October 28th at 12 pm PT/ 3 pm ET/ 7 pm GMT for a virtual workshop with Marisa Renee Lee focusing on this important topic. www.meaction.net/event-detail... #pwME #grief #ChronicIllness #MECFS #Spoonie

Want to know what is happening with RECOVER-TLC, aka NIH’s Long COVID research program? ​​Check out our summary of the 2nd annual RECOVER-TLC research workshop that took place in September. Read the full summary here: bit.ly/RECOVER-TLC

I’m on Day 4 of a migraine, but that’s nothing compared to what people are suffering from USAID cuts, unconstitutional deportations, illegal military actions, and the loss of healthcare access. Thanks to @meactnet.bsky.social for the perfect #MECFS protest shirt. #NoKings Douglasville, Georgia

We know a lot of people are wanting to participate in actions or protests right now. #MEAction has a Protest Guide for those with ME or other energy-limiting chronic disease to help! Find it here: www.meaction.net/_files/ugd/b... #pwME #MECFS #ChronicIllness #protest #spoonie

If you can’t take to the streets, know you’re alright. #NoKings Here’s a guide on protesting from home. Me, I will postcard and email if able. Remember even if you can do no action, Survival is an Act of Defiance. bsky.app/profile/meac...

We know a lot of people are wanting to participate in actions or protests right now. #MEAction has a Protest Guide for those with ME or other energy-limiting chronic disease to help! Find it here: www.meaction.net/_files/ugd/b... #pwME #MECFS #ChronicIllness #protest #NEISvoid #spoonie

Grief and complex chronic illness often go hand in hand. Join us on October 28th at 12 pm PT/ 3 pm ET/ 7 pm GMT for a virtual workshop with Marisa Renee Lee focusing on this important topic. www.meaction.net/event-detail... #pwME #grief #ChronicIllness #MECFS #Spoonie #LongCovid

#MEAction is excited to announce we are partnering with the Writers Guild Initiative (WGI) again to offer creative writing workshops for people with ME and Long COVID. To learn more & get link to the application read this article: www.meaction.net/post/apply-t...

Oooh, this is really smart. When I still had the physical strength to attend protests, I carried my own #MyalgicEncephalomyelitis kit w/ me. Great to see our most prominent advocacy group laying out a blueprint for everyone w/ post-infectious illnesses. #pwME #pwLC #LongCovid

Truly honored to have lead the inaugural chapter on #MECFS management in the @elsevierconnect.bsky.social textbook Scientific Basis of Fatigue, "Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A New Narrative." The greatest honor of all was co-authoring with my role models--

And thank you also to everyone in the community who took the time to send thank you messages!! Wow!! We received the eCard and are so overwhelmed (in the best way) by your support and are so so grateful. 🥹 @meactnet.bsky.social

@meactnet.bsky.social's Executive Director, Laurie Jones, wrote a op-ed about the medicaid work requirements that was recently published in MedPage Today! Thank a look below!👇

We know that there are a lot of protests happening. Stay safe everyone! We have a protest guide available! www.meaction.net/_files/ugd/b... It includes planning an accessible protest & attending an in person protest when you have ME or similar. #pwME #Protest #MECFS #ChronicIllness