#MEAction

This year, MEAction is on the precipice of our most important work yet, and it couldn’t be at a more crucial time for our community. Give at link in our bio or through our Instagram fundraiser. We are a small but mighty disability-led organization that has fought for nearly a decade to get us to where we are today. This year, you can pick where your money goes—either to specific programming or to where MEAction thinks it is most needed. ADVOCACY: When ME and Long COVID are formally recognized as serious and complex medical conditions, everything changes. Research funding follows. Medicaid protections follow. The way doctors, lawmakers, and institutions treat our community follows. That recognition is what we are fighting for, and we are fighting on every front at once. EMERGENCY DEPARTMENT PROGRAM: Too many people with ME leave emergency rooms dismissed, misdiagnosed, or made worse. That ends here. Jaime Seltzer has been working alongside clinicians at the Mayo Clinic to transform how ME is recognized and treated in emergency care. We’re thrilled to announce a new Emergency Department Program that will establish updated clinical guidelines for ERs across the country, a change that could protect patients at their most vulnerable moments. CANARY CORPS: #MEAction plans to launch Canary Corps, a social support program helping people with ME, Long COVID, and other infection-associated chronic illnesses access Medicaid, navigate new work requirements, and connect with Home and Community-Based Services. But we can't do it without you. #pwME #MyalgicEncephalomyelitis #MillionsMissing #FrailAndFurious Keywords: Long Covid ME/CFS Chronic Illness Advocacy Disability NonProfit Advocacy Medicaid Research support Medical education

#MEAction is at HHS today for #MillionsMissing to educate officials and the general public about what's at stake for disabled people under Medicaid Work Requirements. Right now, HHS has the power to protect tens of thousands of lives. Despite being one of the most debilitating chronic illnesses, ME/CFS and Long COVID are at serious risk of being left off the "medically frail" exemption list, which means our community could lose our health insurance the moment Medicaid work requirements kick in. That is not acceptable. We speak from lived experience. We know our community's needs. And we know we are not alone. To every disabled person, every chronic illness community, every person who could lose coverage under these requirements: We see you. We stand with you. If your community is part of the "medically frail" population, we support your fight to protect Medicaid for the most vulnerable among us. HHS is expected to finalize its guidance to states on "medically frail" exemptions by June 1st. That deadline is coming fast. The time is now to educate, ask, and demand that HHS do the right thing. 📣 Share this. Tag your community. Make some noise. Sign our letter to HHS. Link also in our bio or can use QR code in image. /savemedicaid We are #FrailandFurious. #disability #ProtectMedicaid #pwME #LongCovid #MECFS #ChronicIllness #Medicaid #UnitedForME Alt text embedded. ID: Call to sign a letter urging HHS to finalize guidance on medically frail exemptions for Medicaid work requirements. Flyer with white background and red and black lettering with a QR code that takes you to a site with ways to help. Frail and Furious #MillionsMissing logo in corner. Text: Sign our letter to HHS today. HHS is expected to finalize its guidance to states on "medically frail" exemptions for Medicaid work requirements by June 1st. That deadline is coming fast. The time is now to educate, ask, and demand that HHS do the right thing.

This #MillionsMissing, we are Frail and Furious! This May, we will come together to show the world how devastating this disease is. Join us: millionsmissing.org Link also in our bio! Government and healthcare systems around the world fail to understand myalgic encephalomyelitis (ME) as a serious, complex medical condition, leading to significant neglect in medical care and social services. Diagnoses are often delayed for years, disability qualifications are complicated, and our health care is at risk. Over and over again, people with ME and Long COVID are asked to prove their medical frailty - how sick we really are. We ask you to share your story about what it’s like to live with this serious, complex medical condition in order to get the recognition we need and deserve. Injustices are happening worldwide because ME is not taken with the seriousness we deserve. It’s why we are asking you to amplify the medical frailty of ME. We are frail and furious and we need you to join this fight! #FrailAndFurious #pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #UnitedForME #WorldMEDay Image description: New Frail and Furious logo plus the MEAction logo on red slightly swirled background. "Frail and Furious" is shown on a swath of white paint. Underneath is the text "#MillionsMissing" but the second I is the outline of a person. MEAction logo is a circle with the text #MEAction in the circle.

We cordially invite you to Fick Off cup! In honor of #BlueSunday2026 and solidarity with Ireland boycotting Eurovision with Father Ted. MECFS (Myalgic Encephalomyelitis) is a neuroimmune disease with the unique and defining feature of #PostExertionalMalaise PEM is the worsening or onset of symptoms after minimal physical, cognitive, emotional, or sensory exertion that is often delayed 12-72 hrs and presents with distinct neuro, immune and metabolic markers. It feels like being poisoned and dubbed “a living death” personally it feels like experiencing Anti-Life. It is theorized to be inability of cellular recovery from exertion. Muscle necrosis occurs during PEM (Wüst, 2023). PwME lack metabolites expected post exercise (Glass, 2023). pwME cannot repeat aerobic function & mitochondria switch to anaerobic energy which 95% less efficient and produces lactic acid & oxidative stress (Workwell) Graded exercise is NOT recommended ME (NICE, CDC) If you have ME, your exertion priorities are ADLs (activities of daily living- hygiene, cooking, eating, dressing etc). Until you can do these safely, do not add exercise! We are so #FrailAndFurious #MillionsMissing For TeaPartyForME2026 Blue Sunday we ask that you learn from and support ME orgs @meactnet @openmedf @solve_cfs @bateman_horne_center For decades psychologists made the determination ME was a psychosomatic disorder because it affected mostly women and standard tests did not show the pathology found on more specialized tests. They staked their careers on the theory patients just needed exercise and therapy. Their study designs showing exercise & CBT helpful or curative were so extremely poor that in 2021 NICE evaluations found them to be of low and very low quality #GreatestMEdicalScandal Reel credit: Maya Video description: Clip from Father Ted. A woman insists on tea despite persistent protests from Father Ted (a middle aged priest with prematurely white hair). She burns him with the tea and moves on to Father Jack a disheveled grumpy old priest we responds with “fick off” Text adapted to persistent arguments ppl make for GET and explanations why that’s wrong in ME.

Blue Sunday ,The Tea Party for M.E., is tomorrow - May 17, 2026! Everyone is invited! A huge thank you to Anna Redshaw @theslowlane.ME for creating this event. Ideas from Anna on how you can join in: - Wear something blue (pyjamas count!), and/or - Dig out your best cups and saucers, and/or - Bake or buy your favourite cake, and/or - Post a photo of your tea party set-up to social media, and/or - Invite others to enjoy tea and cake with you in-person, via video call, or by sharing photos, and/or - Donate the price you’d pay in a café to an M.E. charity, and/or - Connect with others online who are doing the same, by commenting on their posts You can use the hashtags #BlueSunday2026 and #TeaPartyForME2026 More info at the slow lane dot com. If you are wanting a virtual gathering to join, #MEAction North Carolina @meactionnc invites you to attend regardless of where you live at 1 pm ET tomorrow. Link in bio. "Bring your tea and treats. Find your coziest spot. And join us for some relaxing community fun. We encourage people to wear blue if they can. But, come as you are — in PJs, from your bed or sofa, whatever makes you comfortable. You can join the conversation or just listen with your camera off." MEAction North Carolina is suggesting an OPTIONAL gift of $5 to their fundraiser. Thank you so much! We also want to say thank you to @BabyDeerBakery who once again ran a fundraiser for Blue Sunday where they offered scones and more to be ordered for tomorrow! Thank you, Cory Anderson! Thank you to everyone joining in however you can. And sending so much love out to those unable to join in this year. #pwME #MECFS #MyalgicEncephalomyelitis alt text embedded ID: Invitation for Blue Sunday tea party on May 17, 2026, featuring a blue floral teacup and saucer with a handwritten 'you're invited' note.

*Sound on! Lately, I have trouble looking back on my days before my turn of 40; I am and will always be a storyteller...but things will never be the same. Life before my MECFS brought me into a party with all these strangers--I didn't know who POTS, MCAS, SFN, and hEDS were. I've gotten more acquainted with them, but they dictate the terms. In their wild life, I merely get to choose the soundtrack and the edits. If you participated in this past week's #MillionsMissing for #MEAction IN ANY way, give yourself a pat on the back. From the bottom of my nostalgic heart, thank you. Now, time I get some rest, because the real work is about to begin! No Ai was used to make this. It only took 6 hours. Everything made on my phone. #mecfs #chronicillnessiswar #photoalchemy

Postponed due to rain. New date 5/24 ❤️

M.E. is an Anti-Life Machine Even “mild” ME reduces your capacity by 50% Those with Severe & Very Severe are left holding on to threads of life trapped in beds in darkened rooms. Your life disappears around you while it literally feels like cellular life energy is being sucked out of your body. We are #FrailAndFurious and #MillionsMissing The defining and unique characteristic of Myalgic Encephalomyelitis ME (or MECFS) is Post Exertional Malaise (PEM or sometimes Post Exertional Neuro immune exhaustion PENE). It is not the same as just symptoms after exertion. It is a distinct pathological response to exertion including cognitive physical emotional or sensory that is often delayed 12-72 hours with specific neuro immune & metabolic markers. PEM does not occur in any other illness, however many people develop ME from various triggers including viruses, bacteria, mold, major traumas (pregnancy, surgery, TBI), toxic exposure etc. ~50% of people with LongCovid will develop ME subtype Please check out these great organizations supporting people living with ME, providing education, care and research @meactnet @bateman_horne_center @openmedf @solve_cfs @rthm_health PwME #PostExertionalMalaise SevereME VerySevereME Reel credit: Maya Video Description: Cuts from The Princess Bride Pit of Despair. The Six fingered man (white with black medium long hair in yellow renaissance clothing) questions Westley (laying on table strapped to device) how he feels after having a year of his life sucked away. Text: MECFS inventing the AntiLife Machine (PEM)

Shaina shared her #Medicaid story at #MillionsMissing 2026. Access to Medicaid can be life saving. Our #FrailAndFurious campaign is going on all year and we are focusing on protecting Medicaid for ME, Long COVID, and other infection-associated diseases and disabilities. Shaina shared her Medicaid was taken away and that “losing your access to care...is one of the most traumatic experiences.” We are trying to prevent others from living through Shaina’s traumatic and life-endangering experience as these new work requirements to Medicaid go into effect. Thank you to Shaina for her openness and willingness to speak out to help others. We appreciate you! Please join us in our fight! More info in our linktree. Right now we have a $7k match to all given to help advocacy. Linktree in our profile! #MECFS #disability Video description: An olive skin-toned woman wearing a red jacket, blue leggings, and glasses sits in a wheelchair outside HHS building speaking into a microphone.

We are excited to announce another collaboration with the Writers Guild Initiative (WGI). We will be offering writing workshops to our community on June 6th, 13th, and 20th. Please apply by the May 22, 2026, deadline. Head to our linktree. Due to the volume of applications we receive, only those chosen will be notified. You do not need to have a background in writing to apply! Hope to see you there. A huge thank you to @writersguildinitiative for this ongoing effort. We have had the most amazing responses from those who have participated in past workshops. #PwME #MylagicEncephalomyelitis #MECFS #longCovid Video description: Shalida Dobbins (Black Woman with hair pulled back wearing a light blue shirt) leans on her hand as she speaks directly to the camera. Captions are added.

This #MillionsMissing was powerful. "Medical Frailty" was our rallying cry to advance research and protect Medicaid. We met with the Acting Chief of Staff to the U.S. Surgeon General, and connected with the Centers for Medicare & Medicaid Services. We also had 11 Congressional meetings to advocate for appropriations to fund the ME/CFS Research Roadmap, alongside @NotJustFatigue . We are very excited about the relationships we have built with Congressional Offices, and the strategy we’re taking away. Real wins. Real relationships. Real next steps. Our state-by-state campaign to save Medicaid for people with ME and Long COVID continues all year. The path is not simple, but the relationships we built this week and our grassroots plan give us a real shot. Unfortunately, our meeting with the NIH Director needed to be rescheduled for June. But this could be a blessing in disguise because we may have more information on appropriations by then that will inform our strategy going into the meeting. Help us keep fighting for the healthcare our community deserves. We have a NEW $7,000 matching grant to help us fund our advocacy. Every $ will be matched from now UNTIL MONDAY. SEE LINKTREE for you know what! #MillionsMissing #FrailAndFurious #MECFS #Medicaid #pwME Video description: Video opens panning over cots with red blankets and decorated pillowcase with large signs containing text in between. Then pans to the HHS building. People are walking around the display and talking to one another. Then photos of speakers speaking into a microphone and those listening are shown. Some are standing. Some are in wheelchairs. No spoken word. Text at beginning: on May 12th, 2026 #MEAction demonstrated at HHS for #MillionsMissing. Text at end: Frail and Furious #MillionsMissing meaction dot net

#MEAction had an excellent meeting with Senator Lindsey Graham’s office yesterday about setting aside appropriations to fund the ME/CFS Research Roadmap. Thank you to MacKenzie Hand (in video) for advocating in the meeting and all the advocates who joined us in DC! Over the past three days, #MEAction met with 8 Congressional Offices to advocate Congress fund the roadmap, in partnership with #NotJustFatigue. We developed some important relationships with key Congressional Members, and were able to use our experience working with the NIH on the roadmap to leverage interest in this critical issue. We will keep you updated as our advocacy plays out. We can't do this work without your support. Please give to keep our advocacy going. Link in bio! We have much more to share! #MillionsMissing #FrailAndFurious #MECFS Video description: Light-skinned woman with long brown hair speaks directly to the camera outside of congressional offices in DC