Solve M.E.

A black and white photo of a hand resting on a pillow, lighted by a flash in an otherwise dark bedroom.

On this Severe ME Awareness Day, I present to you my newest exhibition: “In the Absence of Light”. 1/3

www.aquietstorm.me/in-the-absen...

#MECFS #SevereME #SevereMEday #pwME #Photography

In a dark room, golden foil balloons shaped as the number "30" rest on top of a brown comforter. Behind the balloons, Bente—a person living with very severe ME—is lying in bed, wearing a sleep mask and noise-canceling headphones.The wall behind her features bold, black text that reads: 'R.I.P. TO MY TWENTIES — GONE, BUT NEVER FORGOTTEN’.

by Bente Kubin

"Time feels weird when your life stands still. When you can hardly create new memories. You’re in some kind of strange time capsule, trapped and hidden away under unbearable conditions, while the world outside carries on as usual."

ow.ly/fIpL50WCg7y

In this video, Solve M.E. Lived Experience Taskforce (LET) member Hollis Mickey talks about why it’s important that the language of blame be avoided when discussing #SevereME.

#UnitedForME #SevereMEDay

Graphic with teal background and white font reads: August 8 Severe ME Day Resources and Educational Materials

On Aug. 8, we mark #SevereMEDay & raise awareness by elevating the experiences of those impacted. We also share free educational resources to help people understand the impact of #SevereME.

Learn more here:
ow.ly/KBjQ50WCcMh

#UnitedForME #LearnFromME

On #SevereMEDay, we commit to making the hidden visible.

💡We amplify their reality.
💡We speak because many can’t.
💡 We share their stories.

Be the light. 🕯

#UnitedForME #LearnFromME

Many spend months or years in dark, silent rooms, too sick to sit up, speak, or eat. And yet… they also still use what little energy they have to advocate, to survive, and to be heard — even when the world can’t see them. They are not gone. They are #HiddenButHere.

What if your body couldn’t bear light, sound, movement — or even touch? Today, #SevereMEDay, we ask you to imagine living that way not just for a day… but for years. For people living with Very Severe ME, this isn’t a metaphor — it’s reality. 🧵

Urge Congress to Keep ME/CFS Language in Final FY26 Appropriations The Senate included critical ME/CFS and Long COVID provisions in its FY26 spending bills—now we need the House to keep them. Call your Representative and urge their support for these life-changing mea...

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Here’s the thing: none of this happens unless the House keeps it in their version of the bill.

We need champions in the House to fight for this language. 📢

You can email your Rep in 2 minutes here:
solvecfs.quorum.us/campaign/136...

Let’s make sure these wins survive. 💙

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And… the PRMRP budget is restored to $370M, with ME/CFS staying eligible for the Peer-Reviewed Medical Research Program.

That’s the same program that funded the $13M Bezisterim trial on brain fog & fatigue.

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They also strengthened Long COVID research by explicitly connecting ME/CFS, PEM, and POTS as ways Long COVID can present.
That means more multi-systemic research, more collaboration across conditions, and more chances for us to be included in studies.

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Next: the NIH ME/CFS Research Roadmap.
Senate says NIH must implement it and send a detailed plan within 180 days of enactment — focusing on biomarkers, diagnostics, and clinical trials.
We still need $$ to make it happen, but this creates accountability.

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Prevalence tracking is HUGE.
Every time we meet with Congress, they ask:
“How many people have ME/CFS?”
“What’s the economic impact?”
Right now, there’s no solid national data. This would change that — and help unlock bigger research funding.

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First, the CDC ME/CFS program — we were worried it might get cut this year.
Instead, the Senate kept the $5.4M AND told CDC to:
📊 Do national prevalence tracking
🧪 Do more epidemiological studies
📚 Update clinical guidance
🏥 Expand provider education to rural & underserved areas

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Hey y’all— we’ve got some good news from the Senate for #MECFS
They just passed FY26 appropriations language with some big wins for our community.
But… they only stick if the House keeps them in. Here’s what’s at stake 👇

Simple graphic with logos from Bateman Horne Center, Solve ME/CFS Initiative, Open Medicine Foundation, and MEAction at the top. Text underneath reads: “Together, we’re amplifying Severe ME voices with one united hashtag: #UnitedForME.”

In honor of #SevereMEDay (Aug. 8), we’re launching #UnitedForME, a shared hashtag to amplify stories, art & education from the Severe ME community. Join us in uplifting voices that need to be heard.
#SevereME #LearnFromME @batemanhornecenter.bsky.social @openmedf.bsky.social @meactnet.bsky.social

Home - DecodeME The world's biggest study into the causes of ME/CFS.

Congrats to @decodemestudy.bsky.social
on the publication of the preliminary results from their genetic study of #MECFS. They identify 8 genetic signals where people with ME/CFS differ from those without, linked to the immune and nervous systems.
decodeme.org.uk

Announcement for a clinical trial webinar on low-dose rapamycin targeting autophagy for ME/CFS, Long Covid, and IACCIS on September 4 at 3 pm PT/6 pm ET. Includes photos of Dr. C. Gunnar Gottschalk, Dr. Avik Roy, Dr. Stephanie Gratch, and Emily Taylor.

Register for our Thurs. September 4 webinar on the Solve ME/CFS Catalyst Award-winning study from the team at bsky.app/profile/simm..., "Targeting Autophagy: A Clinical Trial of Low-Dose Rapamycin for #MECFS, #LongCOVID, and #IACCIs."
Sign up here: ow.ly/ReIW50WApvO

YouTube video by SolveME Probing Functional Autoantibodies in Patients with ME/CFS

Last week, we hosted @virusesimmunity.bsky.social
to discuss her Catalyst Award-winning study, “Probing Functional Autoantibodies in Patients with #MECFS."
She shared how her work lays the groundwork for targeted treatment & advancing diagnostic tools. Watch here:
t.co/43CpYSc4ms

YouTube video by SolveME Probing Functional Autoantibodies in Patients with ME/CFS

Yes! You can watch the recording here:
youtu.be/9ar0xtGwmrQ?...

This #SevereME Awareness Month, we recognize those living with the most severe & isolating form of #MECFS. Solve & @batemanhornecenter.bsky.social co-hosted a
4-part series on caregiving, legal planning, treatment, and research.

Watch Pt. 1 on Caregiving:
ow.ly/6CUn50WAoW4

#UnitedForME

Causes of symptoms and symptom persistence in long COVID and myalgic encephalomyelitis/chronic fatigue syndrome Debilitating symptoms for many years can follow acute COVID-19 (“long COVID”), myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and variou…

Solve M.E. Research Advisory Council Member Dr. Anthony L. Komaroff co-authored an article proposing an additional cause of symptoms in #MECFS & #LongCovid that can be triggered by underlying abnormalities & might be more easily targeted for therapy.

Read the article here:
ow.ly/VmN750Wyc2X

SolveME Welcome to the video home for the Solve ME/CFS Initiative (Solve M.E.). Solve M.E. is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cure...

Yes! We'll record and post it to our YouTube page ASAP:
www.youtube.com/@SolveME/vid...

A square graphic with seafoam green and teal shapes bears a white version of the Solve M.E. double-helix logo and the text: Solve M.E. is Hiring. Solve M.E. is now hiring for the position of Vice President of Scientific Programs in Los Angeles, CA. Apply at: https://ideali.st/qzVxAX

Solve M.E. is now hiring for the position of Vice President of Scientific Programs in Los Angeles. Apply today! ow.ly/hzc250WnQMJ

A square graphic with the Solve M.E. orange and green double helix icon includes a background image of a scientific lab overlayed with bold black text that reads "Study by Dr. Akiko Iwasaki & Team Examines ME/CFS Subgroups Based on Cerebrospinal Fluid and Blood Plasma Proteins. Read our summary."

A new Journal of Immunology study co-authored by @virusesimmunity.bsky.social (@yaleschoolofmed.bsky.social) distinguishes groups of people with #MECFS based on blood-plasma & cerebrospinal fluid proteins and has implications for causes, symptoms, & treatments. Read our summary:
ow.ly/rtO850Wwsyx

A blue awareness ribbon reads "Support CFS/ME Research."

📢#MECFS research of potential treatment (Hydrogen Water): Volunteers needed. New study of OTC supplement for chronic fatigue symptoms. Home-based. Participants paid up to $100. For more information, study coordinator: fred.friedberg@stonybrookmedicine.edu
#MEAwarenessHour

blueish muted background, with a dash of orange/pink. at the top of pink star with the text: 4 days left to submit artwork. Beneath the star is text: Severe ME Artists Project 2025. Then a black line with text: All artwork due by Thursday, July 24th. #MEAction logo in bottom right corner.

Four Days Left to Submit Art for Severe ME Artists Project– deadline is July 24th!

Details: www.meaction.net/2025/07/10/s...

We have had a wonderful response so far!

Email sMEartistsproject@meaction.net if you need help!

#SevereME #SevereMEDay #pwME #art

Bridget O'Shea Obituary (2025) - Chicago, IL - Chicago Sun-Times View Bridget O'Shea's obituary, send flowers and sign the guestbook.

We are deeply saddened to learn of the passing of our friend Bridget O'Shea. A medical writer and advocate dedicated to educating people about #MECFS, she wrote at length about her struggle with the disease. Sending our condolences to her loved ones.
legacy.suntimes.com/us/obituarie...

Rectangular graphic with teal lettering advertises a webinar on Thursday, July 31 at 12 pm PT / 3 pm ET "Probing Functional Autoantibodies in Patients with ME/CFS." Two women with shoulder-length brown hair are pictured: Dr. Akiko Iwasaki (Yale School of Medicine) and Emily Taylor (President and CEO of Solve M.E.)

Register for our July 31 @ 12 pm PT / 3 pm ET webinar with #MECFS Catalyst Award winner
@virusesimmunity.bsky.social
(@yaleschoolofmed.bsky.social).

Dr. Iwasaki will discuss her study, “Probing Functional Autoantibodies in Patients with ME/CFS.”

Sign up here: ow.ly/oPsF50Wrv74

Register for our 7/22 webinar w/ Dr. Peluso, Ezra Spier, & Dr. Penny Markham (@biovie.bsky.social) on the ADDRESS-LC trial re: potential impact of the drug bezisterim on cognitive impairment/brain fog & fatigue on #LongCovid. ow.ly/XhE350WpzA3
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In a new Health Rising post, Cort Johnson spoke to
Michael Peluso, MD (UCSF) about working with the #LongCovid community & why researchers are "all thinking about how we can apply what we’ve learned to #MECFS” and other associated conditions.
t.co/m7XxYYv1CC