"the federal government has an approved, expert-built research roadmap for ME/CFS...developed through a rigorous NIH process with scientists, clinicians and patients, and last year Congress directed NIH to implement it." @NIHDirector_Jay "has called for prioritizing ME/CFS" 1/2

The Long Covid Community are asking for dialogue & meaningful patient engagement to ensure safe and appropriate education for psychiatrists. #RCPsychIC #HearOurVoices Why? Read our open letter signed by 58 charities & orgs 👇️

FDA is extending the comment period for the Request for Information on Drug Repurposing for Unmet Medical Needs by 30 days — now open until July 11, 2026! federalregister.gov/d/2026-1… Plus, join us for a hybrid public workshop on drug repurposing on August 5 that will cover public docket comments & approaches for prioritizing and selecting repurposing candidates. Stay tuned for registration details. reaganudall.org/news-and-eve…

I’m so excited. My secret (not so secret) observational experiment is about to begin. This is a once in a lifetime opportunity for wastewater surveillance. FIFA World cup. 1/ @SecureBio scientificamerican.com/artic…

Action Alert!! ~~Digital Accesibility~~ Digital accessibility matters for our community - trial participation, dr visits, support, boring forms, fun social media... July 6th - Final day for comments to HHS Read more - sample comment included disabilitybelongs.org/2026/0…

David shares at #MillionsMissing 2026 about his life with his wife Shaina, a #pwME (who also shared!). "Nobody should have to disappear just because they got sick. And nobody should be punished for loving someone who is.” Full speech: youtu.be/UE3U8O5rWcg #Caregiver #pwME

Monday we officially launched our national county-level COVlD heatmap and called on the CDC to do the same. They have not updated their main wastewater map yet. However, the CDC did update their main ED forecasting map with county-level data. #KeepFighting

To spot the signs of stroke B: Balance- loss of coordination E: Eye -vision changes F: Face -drooping on 1 side of the face A: Arms & legs -weakness in a limb S: Speech -difficulty speaking or understanding T: Time -call 911. Time is brain health.clevelandclinic.org/b…

NEURODIVERGENCE in RADIOGRAPHY- Words matter in healthcare. Sometimes they can affect diagnosis, safety, and access to care. A new paper examines how language used in radiography and imaging departments can influence the experiences of neurodivergent patients. Importantly, the discussion goes beyond communication. It highlights the physical health inequalities experienced by many neurodivergent people, including chronic pain, hypermobility, autonomic dysfunction, and chronic fatigue. Our latest blog explores why this matters for patients, professionals, and healthcare systems. Read more: sedsconnective.org/post/neur… #Neurodivergence #Language #PatientSafety #Radiography #PhysicalHealth #Autism #Hypermobility

Friendly reminder: with tick-activity at an all-time high - remember that Lyme rashes don't usually look like bulls-eyes. They are more likely to be red/pink all over. Check out pics from participants who volunteered for our biobank. 👇

RT @TogetherWeMask: “I wear a mask because the impacts of airborne diseases like COVID are well documented, and N95s are one of the most ef…

Community care for #MEAwarenessDay Liking and retweeting counts. The algo needs feeding to get the message heard.

I'm one of the "Frails" in this reel. I'm also a registered voter. I have #MECFS. There is no FDA-approved treatment. The CDC has been gutted. Experts fired. And now Medicaid work requirements threaten to take my healthcare. @RepMcCormick @meactionga #gapol

One of James Strazza’s final poems. released today for #MEAwarenessWeek by his mother Gale Warden. James, a musician and poet, died last week, he had suffered from severe #ME since 2019.

I'm one of millions missing from our lives due to Myalgic Encephalomyelitis, each with their own challenges and losses. Unlike Covid lockdowns, the lockdowns we have dealt with for years due to ME continue #May12 #MEcfs

On International ME/CFS Awareness Day, we stand with millions of people living with a disease that has too often been misunderstood, underestimated, and neglected. ME/CFS patients deserve visibility, dignity, and a scientific response equal to the severity of their illness.

On this ME Awareness Day, I urge physicians and all healthcare providers to review the diagnostic criteria for this debilitating disease, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Recognize it, diagnose it, treat it. cdc.gov/me-cfs/hcp/diagnosis…

🌟 Celebrating Stefan Chin of @SciShow & Jaime Seltzer of #MEAction, as finalists in the #emergeaustralia #mecfs Awards for Journalism Excellence for the video Exercise Actually Makes Chronic Fatigue Syndrome Worse. 🔗 Watch: zurl.co/Rzsg7 Thank you Stefan and Jamie!

The @ICanCMEResearch presented a 3 day conference in November that really centered itself around the axiom "nothing about us, without us." PwME designed/facilitated. It created some great content These pwME are crashed .. but their work isn't! Like, watch, share on YouTube!

Blue Sunday for M.E. and you. If you want the box of tea and goodies, sign up for that by May 8. Can sign up for the zoom up until The 17th.