Getting ready to watch the livestream; it seems to be starting a few minutes late. I can't promise a full live blog but will do my best to share major updates here (while @mileswgriffis.bsky.social and I also work on our write-up).

RFK Jr is holding a panel on Long Covid the day before Covid vaccines are discussed at ACIP. I wonder if he's going to claim that Covid vaccines cause Long Covid.

Solve ME/CFS Initiative Summer 2025 Chronicle solvecfs.org/wp-content/u... #LongCovid #MEcfs

The study's out--results from a large patient survey on symptoms and treatment efficacy for ME/cfs and Long COVID. Spoiler alert! "Notably, there is significant overlap in the symptom profiles and treatment responses between ME/CFS and long COVID." (As we all knew.) www.pnas.org/doi/10.1073/...

#MEAction is proud to bring you our Severe ME Artists Project 2025 that will feature work from those within the severe ME community and will be in recognition of Severe ME Day on August 8th! We have all the details here and we are happy to help you submit your work: www.meaction.net/2025/07/10/s...

#MedEd event -FREE CME/CNE credits for a virtual facilitated discussion on #MECFS -TOMORROW! events.jhu.edu/form/me-cfs When: July 9th at 12p EST Where: Zoom Who: Johns Hopkins, Stanford & Karina (#pwME) What: Overview of patience experience & current research #MedTwitter #pwME

BREAKING: Scientists are staging a “science fair” in the lobby of a Congressional building to tell elected officials about the critical knowledge the US will lose because their research grants have been canceled.

Dear @barackobama.bsky.social: You did a great job with the Bayard Rustin biopic on Netflix. Please consider focusing your next @netflix.com series on Senator Sumner, based on the stellar biography by @ztameez.bsky.social

An inspirational and essential July 4th interview by @nytimes.com great @jamellebouie.net of @ztameez.bsky.social on his new book about Charles Sumner. www.nytimes.com/2025/07/05/o...

“I knew about Charles Sumner as this U.S. senator who had been caned on the Senate floor as a prominent politician during the Civil War. What I did not know is that more than 100 years before Brown, Charles Sumner tried to integrate the schools of Boston in a case at the Massachusetts Supreme Court”

We're hosting a Patient-Led Research Fund (PLRF) webinar on July 9, 1–4:30PM ET! Hear results from 10 PLRF-funded biomedical studies (on microclots, T cell exhaustion, trials, & more), all selected by a panel of patient-researchers. 🗓️ Register: us02web.zoom.us/webinar/regi... #LongCOVID

I'm running the Boston Waterfront 5K to raise money for #MassME an organization that supports those with #MEcfs #LongCovid #Fibromyalgia. No donation is too small. fundraisers.hakuapp.com/andrea-joliat

Thx, @cortjohnson.bsky.social, for writing about the groundbreaking researchers Liisa Selin MD, PhD, Anna Gil PhD & Roshan Kumar PhD. I am lucky to get to work w/ them. “Finding the Key? Could Unraveling T-cell Exhaustion Solve ME/CFS and Long COVID” www.healthrising.org/blog/2025/05...

Today is May 12th ME Awareness Day. This is my view most days. I’d like for it not to be my view forever, but even more I want for my friends in sickness not to lose the supports they need to survive. #DisabilitySOS #MEAwarenessDay #MECFS #LongCovid

We miss our co-founder Beth Mazur. We have lost too many and that loss is carved into our souls. We are honored to carry them with us. Board member & her brother, Steve Mazur, shared his SOS for #MillionsMissing. "I am here for my sister and sending out an SOS for ME." millionsmissing.org

Most of our community are not well enough to protest on the street but we are making our voices heard from our beds about why cuts to ME/CFS research funding is so devastating to our community. Wilhelmina Jenkins is one of the #MillionsMissing showing up from home! youtube.com/shorts/ypEHp...

"I feel like so many of us feel like we're drowning right now and are holding high a torch of hope and also to call out for an SOS." Jess shares the artwork she created for #MillionsMissing and will be headed to DC with it on May 12th. www.meactions.org/millionsmiss... youtube.com/shorts/tolpX...

It’s almost May 12, almost #millionsmissing What’s that? Millions of people r missing. Missing fr work, fr school, fr their families, fr their own lives. Where r they? Home, sick; struggling; some r homeless. Some can’t care for themselves. They r hoping tomorrow’s better. Help us get there!

Sending our best to Ben HsuBorger, Terri Wilder #MEAction MN state lead, & other #MECFS #LongCovid advocates heading to Minnesota state capitol tomorrow. House budget is proposing eliminating ALL appropriations for Long COVID grants & health dept staffing! SOS moment for #MillionsMissing in MN.

The ME/CFS Research Roadmap was a major achievement. NIH pulled in researchers, clinicians and advocates to set the course for ME/CFS for the foreseeable future. Now we are sitting by the side of the road, Roadmap in hand, with no resources. Please sign this letter calling for $50 million in funding

🎥 The recording of "Investigating Immune Dysfunction & T-Cell Exhaustion via Single Cell Immune Profiling in #MECFS & #LongCOVID," w/panelists from Selin Lab, HiFiBio & patient reps @rivkabluesky.bsky.social & @themegascope.bsky.social, is online now. Watch here: youtu.be/2DQZp48fyek

Details: solvecfs.org/event/invest...

I'll be joining the Selin and Kumar labs today at 3 pm PT/6 pm ET for a webinar on their research called "Investigating Immune Dysfunction & T-Cell Exhaustion via Single Cell Immune Profiling in #MECFS & #LongCOVID" Register here to attend: ow.ly/4Spj50VumTk

Register for our April 29 (3 pm PT/6 pm ET) webinar "Investigating Immune Dysfunction & T-Cell Exhaustion via Single Cell Immune Profiling in #MECFS & #LongCOVID," w/ Liisa Selin, PhD (Selin Lab), Roshan Kumar (HiFiBio), Megan Fitzgerald, PhD, & Rivka Solomon, M.S. Sign up: ow.ly/4Spj50VumTk

Join me! Tues, April 29 (6pm ET) to hear about immune dysfunction & single cell profiling in ME & Long Covid. Research is being conducted by 2 collaborating labs — Liisa Selin Lab at UMass Chan Med School & HiFiBiO Therapeutics. I’m a Patient Rep & Advisor w/ these labs. solvecfs.org/event/invest...

Thx to journalist Rachel Fairbanks for this excellent review @sweetsciencewriter.bsky.social

NEW: Cuts to Columbia University funding have shuttered a prominent research center into ME/CFS, a debilitating condition with no FDA-approved treatments. It's a gut punch to a community that for years has been frustrated by a lack of funding. Developing... www.statnews.com/2025/03/19/m...

STAT story on the hearing about indirect costs held in Boston www.statnews.com/2025/02/21/t...

IMPORTANT Collecting data to understand and strengthen arguments about the impact of the administration's ill-considered actions and the responses of universities... Please share!

WBUR story up www.wbur.org/news/2025/02...

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...

Stink-sensitive folks for whom perfume is doom, make your opinion smell, or at least count.

BioCentury: “Call to action: Defending the NIH, the NSF and the foundation of American science — a Guest Commentary” ‘There is an assault on the foundation of U.S. science: Silence is not an option’ www.biocentury.com/article/6549...

ASK: Anyone skilled at video content creation on platforms like TikTok? Colleagues who teach undergrads are saying they have NO IDEA about the admin's attacks on science & research. Many get their news from TikTok. We could post 'explainer' vids about banned keywords & effects on science agencies

📣 Links to archived versions of every FDAgov website page available pre-purge: acasignups.net/25/02/06/lin...

International survey on the suffering of fragrance-sensitive people. The anonymous online survey is only available until Feb. 28, 2025. Share with social media and with fragrance-sensitive people. evaluationen-thu.limequery.com/689193?lang=en

Q: What’s the connection between COVID-19 & ME/CFS? A: Certain infections raise the risk of ME/CFS. Evidence shows SARS-CoV-2 (the virus behind COVID-19) increases that risk 5-fold. Raising awareness is key! 💙 #MECFS #LongCOVID #ChronicIllness #Awareness #BatemanHorneCenter

My friend with #LongCovid feels she is being harassed by her private long-term disability company. This makes me so sad sad and mad. I knew people with ME decades ago who also were harassed. And now it’s continuing with Long Covid. youtu.be/8P1QfyVwKcc

Red light therapy (aka photobiomodulation) appears to be a good treatment for acute COVID. pmc.ncbi.nlm.nih.gov/articles/PMC...

Im so excited to be taking the TEDx stage on February 2 in Ojai! There are still tickets & sponsorship opportunities available. Please repost and tag friends who might enjoy this opportunity. www.tedxojai.com #ojai #ventura #losangeles #santabarbara #santapaula #oxnard

New: Trump officials have paused all external communications at health agencies like CDC, FDA, NIH. No health alerts and the famed MMWRs; no updates to key websites or social media posts. And no indication how long the pause will last. With @rachelroubein.bsky.social + Lena Sun.

Cochrane tells ME/CFS patients that they can go fuck themselves: virology.ws/2024/12/17/t...

New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment. youtu.be/RiwX9Y0NbiQ?...

Is ME/CFS the only illness where you can feel like you’re dying every day (for weeks, months, years) but there’s no point in seeing a Dr because even if they have heard of the illness they can’t do anything to help? #ME/CFS

This is a new nasal spray that helps protect against Covid. I just got some. It works by using pectin advanced.onlinelibrary.wiley.com/doi/abs/10.1...

Honored to be interviewed for this piece. Few reporters could pull off the required sensitivity and investigative journalist skills to write this article. Thx Jamie Ducharme @timemagazine.bsky.social Thank u also to the patients & clinicians who shared stories and wisdom time.com/7206080/long...

TIME: 'Dismissed and Disbelieved, Some Long COVID Patients Are Pushed Into Psychiatric Wards' "Another complicating factor: there is no validated medical test for detecting Long COVID, ME/CFS, or similar conditions.." time.com/7206080/long...

I'd probably only trust someone like Jamie Ducharme to write this one. The psychologization of severe-presenting #MECFS and #LongCOVID. Worth a read. 🧪 Props to Rivka Solomon, and other people with lived experience who spoke. time.com/7206080/long...

To protect against viral infections circulating, in addition to masking and in addition to using Neosporin, which I talk about in my earlier posts, I’m also using this new pectin spray developed by Harvard scientists. I’m not affiliated w any of these companies. www.profispray.com

Article on chronic pain in New York Times. Personally, I’ve started a new home treatment called “cupping.” It’s been used for 1000s of years, but I’m new to it. And it *is* lessening my back/leg pain. I’ll link below to the inexpensive cupping set I’m using. www.nytimes.com/2025/01/12/m...