Patients were central to the team that found ME/CFS is most likely to start in the teens and early middle age. Two age peaks is unusual for any disease and might help unravel ME's causes. academic.oup.com/ooim/advance... 1/ team credits to follow

If you were/are in the healthcare field and are living with Long Covid, please fill out this survey (to help out a grad student): twu.qualtrics.com/jfe/form/SV_...

Did you know that Medicaid isn't called 'Medicaid' everywhere, to the point that ONE out of THREE people who are on Medicaid don't ✨know✨ it? So how can they be incentivized to fight for their healthcare if they don't know it's their healthcare? (Alt in the comments, it's a lot!)

There’s an idea when you’re healthy that if you get a serious illness people will rally around you, donate to medical research, educate themselves, that surely if they love you that is how they will respond. It is not. And so we do it for ourselves. #LongCovid #LongCovidAwarenessDay #MECFS #POTS

Not sure what to make of this press release… 🤔 “ #SocialSecurity Administration Brings Medical Continuing #Disability Reviews In-House; Strategic decision offers greater federal accountability & relief for states to focus on faster disability claim adjudication.” www.ssa.gov/news/en/pres...

For #LongCovid Awareness Day, @patientled.bsky.social has released the 2026 Long Covid Fact Sheet! This is a list of key statistics about LC, using recent data to reflect contemporary risks. #LongCOVID patientresearchcovid19.com/2026-long-co...

We're thrilled to release the #LongCovid Treatment Guide! This is a collaboration with @rthm.bsky.social to help patients & providers explore treatment options together. The guide focuses on 24 medications, but includes a few other interventions for breadth /1

Social media volunteers wanted! Apply here: https://www.meaction.net/volunteer 1. Moderators for our online support groups OR 2. Join our social media working group. We are incredibly grateful to our volunteers and for all the ways you step in to care for and grow this community! #pwME #pwLC

Quality of life is not just about having enjoyable experiences, it also means living in minimal pain & discomfort. Often, getting #PEM for days afterward cancels out any momentary joy a certain experience might bring, so I choose not to do it. It’s not avoiding symptoms, it’s preserving QOL. #MECFS

This account by a #pwME seems to fairly consistently post quality nature photos w/ detailed descriptions (yay learning!) & good alt text. Worth a follow if you get a little joy boost from seeing nature.

The same people who haven’t been listening from the beginning are the same people who are shocked to discover how sick I still am. I never downplayed or hid my illness nor declared I got better. You decided it was never that bad & made no effort to learn about it. Your ignorance is not my problem.

The Pillow Writers are an international ME/CFS writing community. Pillow Meetings are completely free and open to anyone with ME/CFS or Long Covid. We are so honored to partner with Bobbi Ausebel to host Pillow Writers. pillowwriters.wordpress.com @pillowwriters.bsky.social #WritingCommunity

sometimes I wonder who I’d have been if I’d been allowed to explore all the creative & adventurous inclinations I had as a child instead of having to suppress them & hope I could circle back as an adult

really tired of conversations about how we need to get people to spend more time offline that don't acknowledge that one of the reasons people ARE online is their access needs aren't being met in physical spaces. This is especially true for queer people and disabled people.

Life is worth it for life's sake. Whether you have health or not, can work or not. Don't let entitled, ignorant bigots or eugenicists of any political stripes tell you otherwise. And it is not wrong to spend more on supporting life than on killing people. It's human and decent. It's what we must do.

The thing that determines how active you’re able to be w/ disability is what type & how severe it is. It’s not your determination, your mindset, your personality. Any suggestion otherwise is how we are socialized to blame people for their circumstances & deprive them of help. #MECFS #LongCovid

New & important preprint paper: Search of Lost Volume: The Potential Causes of Hypovolemia in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Klaus J. Wirth #ME/CFS #pwME #Hypovolemia #Vasopressin

A quote from my piece, The Loneliness of Being Misunderstood, about the invisibility of having #LongCOVID & #MECFS. #PwME #ChronicIllness “The quote, whoever actually wrote it, describes standing behind a glass wall, hoping someone will look through and truly see you.” substack.com/home/post/p-...

Complicated but really decent paper adding some additional context to PEMS. Happy Saturday, Peeps 👋🏻👋🏻 doi.org/10.1007/s000...

I’m sure #perimenopause & #menopause can be horrible for some people, but I’m honestly not even sure I will notice when they happen? Other than noticing if my periods stop… I already have most of the symptoms? 😬 Is this a common experience w/ #chronicillness?

I know this is controversial. But. I’ve been thinking it for YEARS. Where would we be now if people had said from the beginning “Covid gave me #MECFS or #POTS” instead of “I have #LongCovid”? I know that when they first said it people didn’t realize those diseases existed, which in itself is…

Sometimes someone I know will describe how horrendous they felt with a severe acute illness and I will think, “You mean that’s not how you feel every day?”

I feel like one of the most critical understanding gaps is this: Energy equals time. If you don't have energy, you don't have hours in your day. Most people can't imagine fitting all their ADL, let alone a half-hour of comfort tv, in a single-hour day.

Interested in low-dose Rapamycin for Long Covid? The Cohen Center for Recovery from Complex Chronic Illness is actively recruiting for a RCT of the mTOR inhibitor Sirolimus (Rapamycin). The trial aims to evaluate if changes to the immune response as a result of the drug improve Long Covid symptoms.

It took me several yrs of #MECFS to realize that I was still doing things bc other people thought I should. Reading physical books I didn’t miss or trying hobbies I didn’t like bc people were mailing me items to be kind. Going outside more than I wanted so I could say I did when repeatedly asked.

A new study from the Prusty lab shows IgG antibodies from ME/CFS and post-COVID patients can directly disrupt mitochondrial structure and energy metabolism in human endothelial cells, revealing distinct molecular fingerprints. www.sciencedirect.com/science/arti...

It’s too bad they can’t work w/ local doctors within the same state to give these drugs closer to home. I’d love to try this one! but I’m not willing to possibly permanently worsen my health by traveling a few hours away when there’s no drug or doctor that can fix it if that happens.

“This study reports that in utero SARS-CoV-2 viral exposure was associated with decreased cognitive skills in toddlers at age 2, and this association was mediated by cortical gray matter volumes in the newborn brain.” www.sciencedirect.com/science/arti...

Today we’re delighted to launch Sequence ME & Long Covid - the world’s largest long-read, whole-genome study of any disease 🔬 🧬 This £20 million ground breaking initiative will explore the root causes of ME and Long Covid, with the aim of accelerating progress towards diagnostics and treatments.

I know everyone gets excited for spring, but I will be sad to see winter end. Winter is the quietest that it is all year— no lawn mowers, no leaf blowers. It’s darker, which I love. And everyone is inside, so I don’t feel like I’m missing out on, well, everything. #pwME Until next year. ❄️

To anyone that needs clarification, "your best" is what you can accomplish without damage to your physical, mental and emotional health, not what you can accomplish by destroying them

News Release 11-Feb-2026 Vanderbilt Health to lead expanded multisite study of immunomodulation in long COVID www.eurekalert.org/news-release... Randomized Double-Blind Placebo-Controlled Trial EValuating Baricitinib on PERSistent NEurologic and Cardiopulmonary symptoms of #LongCOVID (REVERSE-LC)

The SAVE America Act was passed by the House yesterday. Next it will go to the Senate. Call or email your senator now if able. The National Coalition on Accessible Voting statement, plain language summary, & link to action is here: https://ncavote.org/resource/nosaveact/ #DisabilityVote

“Patients are just happy to be believed.” NO. That talking point accomplishes nothing but soothing healthy people into thinking somehow any of this is okay. The care is beyond inadequate. I have never needed someone to confirm my own lived experiences. I need medical treatment. #MECFS #LongCovid

Hi! Our online art gallery, A Quiet Storm, will host an open call group exhibition on International ME/CFS Awareness Day, May 12, 2026. The submissions will open on March 12th. Our website is currently updated to a dark theme. Full statement below! 1/9 #MECFS #pwME #OpenCall #OnlineExhibition

Contact Congress! ncavote.org/resource/nos... From the National Coalition on Accessible Voting: Disability & civil rights organizations are calling on Congress to stand against the SAVE Act, SAVE America Act, and MEGA Act. These bills will make it much harder for people with disabilities to vote.

I certainly admire athletes like Simone Biles or Naomi Osaka, who take breaks or pull out of competitions to follow their body signals & ultimately protect their health & longevity… over Lindsey Vonn’s “inspirational determination” to ski on a 9-day old ACL tear. Yikes. #WinterOlympics

3) One issue is that post-exertional malaise (PEM) is described as "a defining feature of Long Covid." PEM is the defining feature of ME/CFS, not of Long Covid. If PEM is common in Long Covid, it's likely because a substantial subgroup of Long Covid patients has ME/CFS.

The Long Covid Innovation bill will be heard next in the Maryland Senate! 🥳 If you sent your story already, you can increase your impact by reformatting w/ the Senate bill number (SB0392) and uploading again Tues 2/10 8am-6pm! And if you needed a little more time, here it is! Instructions:

New Survey now out: experiences of people with ME and Long Covid with hyperbaric oxygen / oxygen therapy. Please share widely. For all the info and survey link, head on over to www.physiosforme.com/o2survey

saying no to someone else is saying yes to myself

Interpreting studies do's and don'ts From IACFS/ME Newsletter

Hi all! There will be two windows to share your story in the form of written testimony to support the Maryland Long Covid Innovation bill. The first is: This Friday 2/6 from 8am-3pm To make it easier, @viralpersistence.bsky.social and I have written up a how-to: docs.google.com/document/d/1...

Action alert - We're co-sponsoring @meactnet.bsky.social's ICE Makes Me Sick campaign. Use this easy tool to send a quick message to your House reps: makesmesick.org?source=direc... Tell reps to stop bankrolling ICE violence while slashing our healthcare & homecare. Fund healthcare, not violence!

New research from Griffith University shows people with ME/CFS and Long COVID have altered brain connectivity during cognitively demanding tasks, offering insight into brain fog, memory challenges, and mental fatigue. 🔗 news.griffith.edu.au/2026/01/28/a...

there is a siblinghood among fellow havers of a given illness, both tender and strong there are lots of forms of love in this world, and I would posit that this particular connection is its own canonical form of love

Know Your Rights Webinar for Immigrants with Disabilities - January 29th us06web.zoom.us/webinar/regi...