Hoping folks like @rebeccasolnit.bsky.social @mehdirhasan.bsky.social @weeklyshowpodcast.bsky.social @johngreensbluesky.bsky.social @lastweektonight.com read this article and help us get more (adequate) coverage of LC IACC neuroimmune diseases 🙏🏻. #GreatestMEdicalScandal #JohnVsJonVsME

NEW ARTICLE from me for @fairmediawatch.bsky.social. "Media Won't Stop Psychologizing Long Covid" An overview of this unfortunate propaganda trend in the media since 2020, including where it comes from and what it gets wrong. fair.org/home/media-w...

Excellent article with lots of important history and context about #LongCovid and #ME/CFS in the media. A must read!

Dr. Victoria Copeland wrote a statement for Casey Doherty to share at #MillionsMissing 2026. @vashetc.bsky.social shares their experience as a #pwME & preliminary findings on a research study she is conducting about rest, energy, and myalgic encephalomyelitis. More info: restandmecfs.com

There’s a history of these “psychiatric condition” assertions. Do any of these talking points sound familiar?

If true, we may need some mouse psychologists as well. bsky.app/profile/eric...

The ME/Chronic Fatigue Syndrome community:

For something that we're not allowed to talk about, this viewpoint sure gets a lot of coverage in national publications.

Shame on you Wired. You need to understand the damage you are contributing to. We are dying and you can’t be bothered to research this correctly. bsky.app/profile/long...

Ughhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh I wish I had the capacity to actually address this and I am so disappointed. Bias attempting to mascarade as nuance.

Pity the author didn't review the negative studies in PAIS. Brain Retraining doesn't work. New preliminary data from the AIR trial is a good example. The effect is similar to natural recovery & fluctuations of the disease. Gupta scored even a bit worse than TAU. www.linkedin.com/posts/me-cfs...

That @wired.com hit piece on Long COVID was actually a masterclass in gaslighting. Name-drop the hard science, only to dismiss it. Make it sound like all sides of this "debate" have legitimate arguments. It's the Climate Hoax all over again. "Climate skeptics are afraid of activist backlash".

ok the more I stare at the image of zero studies, the angrier I am. Wired, are you for real? Did you not check for a single study in a reputable journal, first? You're advertising snake oil to desperate people on what? a whim? I assumed a study had come out, at least, even if it was very poor.

oh suuuure, this extremely well-evidenced treatment, just like vaccines-- oh, wait, uh, hang on-- I'm getting that there are no peer-reviewed studies on this with objective measures? none at ALL in this disease space?

Oh for God's sake. Thanks for promoting this pseudoscience I'm sure those who profit are extremely grateful they'll live to grift another day

🧵OF KEY CONCERNS We've now read Alan Levinovitz's WIRED piece on Long Covid. Our concern isn't that it discusses psychological theories. Our concern is that it repeatedly conflates criticism of evidence with creating a "climate of fear". Those are not the same thing. /1

Update: The email of the editor of the Alan Levinovitz Long Covid WIRED article whom letters and concerns can be directed to is available publicly here: jasonkehe.com 💌 [email protected]

We have written to the editors @wired.com & requested: 🔹Editorial Review 🔹Apology 🔹Right of Reply 🔹Review to investigate whether the Levinovitz article meets WIRED standards for fair & evidence-based reporting in health & disability. 📨 Letters can be sent to: [email protected]

#pwME #LongCovid Please take a minute to email wired's editors if you can. They can (and are!) quite easily ignore replies on their socials - but an exploding inbox is much harder to ignore. [email protected]

Imagine watching everything you care about in a house that starts to catch fire.  And there’s a firehose one meter from you, but you're tied to a chair and can’t move.  So you have to sit there and watch it all burn.  That is everyday, over and over again, living with #MECFS 💙

The thing about ME/CFS patients is that it's definitionally difficult for them to advocate for themselves. They just... vanish from society. Which is why it's up to the rest of us to spread the word. To learn more or donate to research, some good orgs are: www.omf.ngo batemanhornecenter.org

With the arrival of Long COVID—a closely related condition—doctors are finally becoming more aware (and less dismissive) of ME/CFS. But there's still so little research, and very little effective treatment, despite a quality of life that can be—as I saw one doc call it—"akin to late-stage AIDS."

It's Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) day of awareness. For the last 8 years, my wife has been bedbound. She can't bathe, can't watch TV, can't get herself to the bathroom, often can't speak. There are MILLIONS of people with her condition—but you never hear about it.

If you’re not affected by ME, I challenge you to look through the hashtags this #MEAwarenessDay & choose one post to share on behalf of the #MillionsMissing. We desperately need healthy allies to get angry for us & advocate for research & social support 💙 #MECFS #WorldMEDay #GreatestMEdicalScandal

Thank you for all you do, Adam. Using your own limited energy to create these videos is a gift to the world - not just the #MyalgicEncephalomyelitis community 💙 -signed, someone w/ #SevereME #pwme #medsky #GreatestMEdicalScandal #MEawarenessmonth #chronicillness #FrailandFurious #MillionsMissing

@amnestyuk.bsky.social @jolyon.goodlawproject.org Successive governments worldwide have known for decades. UK government is complicit in the systematic abuse of #pwME Please help us, we need all the support we can get; we are too sick to fight for ourselves! #SevereME #GreatestMEdicalScandal

A repository of selected ME/CFS and Long Covid documentaries & shorts. Plus some current affairs reports, art films and archival footage by @nessau.bsky.social skywriter.blue/@nessau.bsky... #MECFS #LongCovid #GreatestMEdicalScandal #MillionsMissing #May12th

“The injustice of it, I couldn’t believe it.” Former Team GB rower @oonaghcousins.bsky.social talking about the #MECFS “scandal” where patients were told they were deconditioned and needed Graded Exercise and CBT. It is the “opposite of what they needed” and that legacy still runs “super deep”.

Nevra's struggles to access basic services in Pakistan are compounded by her status as a victim of DV. Without continued funds, she risks being returned to DV.

Freedom is not free- a poem by Nevra Please donate/share to help Nevra access lifesaving medical care and rental housing. paypal.me/SaveLizNevra gofundme.com/f/save-nevra #SaveLizNevra #MECFS #pwME #ChronicIllness #severeME

💙🩵 Save Nevra - May Update 🩵💙 Please donate, share this post, engage in the comments! paypal.me/SaveLizNevra gofundme.com/f/save-nevra #SaveLizNevra #MECFS #SevereME #POTS #MillionsMissing

Nevra urgently needs funds to pay for a hospital visit for heavy bleeding. If you can, please consider donating, and even if you can't do that, please share this post 🧡 paypal.me/SaveLizNevra gofundme.com/f/save-nevra #SaveLizNevra #MECFS #SevereME #POTS #MillionsMissing

@rebeccasolnit.bsky.social ☝️ Really important area of medical misogyny to be aware of. Patients could use your broad-minded eye and pen on this issue. ❤️

It's #BlueSunday2026! A day to fundraise for ME advocacy and the #MillionsMissing, and like every May, I will match your donations! For 3+ years I have been of this world but not in it, and this is my best hope of getting my old life back. For now, this is my day to day: hashman.ca/me-cfs/

Gentle reminder that @eha.sh is kindly matching donations this May! #MillionsMissing #pwME

This was published back in May 2020! #pwME sounded the ALARM about ignoring the grave & disabling consequences of post COVID-19 sequelae. #ME/CFS being the most serious and impactful one: www.washingtonpost.com/health/could... @brianvastag.mas.to.ap.brid.gy & our late Beth Mazur #LongCOVID #IACCs

Celebrating Blue Sunday for #MECFS with a few of my kids. Sandwich and hot chocolate for me, cookies and sparkling water for them! Donated to the emergency department project @meactnet.bsky.social

my mini tea party for blue sunday 🥰 vanilla chamomile lavender ginger tea w/ a cherry lemon doughnut cake i was going to wear my new blue dress but i had paralysis this morning so just getting this together was an accomplishment #bluesunday #meawareness #mecfs

Gathered blues in México for #BlueSunday2026 #TeaPartyForME2026 and donated what I'd pay for coffee & a treat to @meactnet.bsky.social 🦋. @rebeccasolnit.bsky.social's book felt appropriate as #GreatestMEdicalScandal is full of medical misogyny. *see www.johnvsjon.com @johnvsjonvsme.bsky.social

Happy #BlueSunday2026 #TeaPartyForME2026 ! I just donated the cost of a coffee/pastry to @meactnet.bsky.social & to mutual aid for people with ME 🩵

Thanks to my mum for getting everything ready for our family #TeaPartyForME2026 on #BlueSunday2026 (on Sun) We’re doing it in aid of @irishmecfsassoc.bsky.social www.idonate.ie/fundraiser/B... but other worthy charities are available (see the-slow-lane.com/donation-pages ) #MEcfs #CFS #BlueSunday

It's ME/CFS Awareness Day. A great day to watch Unrest, get mad, and realize that this is a common medical condition with virtually no support www.youtube.com/watch?v=XOpy...

ME/CFS is the worst. I'd heard/read about it, over the decades, along with hearing and reading that it's psychosomatic (it's not.) I don't recall any mention of it in my graduate counseling program. Now that I've had it for six years, post-COVID, I can't believe people live with this for decades.

May is #MECFSAwareness Month! With our friends at Open Medicine Foundation (OMF) #MEAction Network and Bateman Horne Center#MECFSAwareness#MEActione're promoting education & understanding of this devastating disease. Join us! Add the tag #UnitedForME to all your ME-related posts this month. #MECFSAwareness

Check out the Zolia Health Symptom Log's iOS or Android version. It is a NEW tracker for sx, meds, & other stuff. Great for seeing if treatments work, to remember when you start & stop taking meds, to follow certain symptoms. Log in seconds! Symptoms, Meds, Notes, Factors, Vitals, Events, Ratings.

The Forget-M.E.-Not collective quilt is a venue to highlight the art, lives, and stories of people living with M.E. so they may be more seen and heard. The project enables participants to represent their story of how their lives have been impacted. forgetmenotquilt.ca/participate

We are thrilled to announce that #MEAction just received a $15,000 matching grant to fund our Emergency Department Project! Every $ you give will be matched to help us reach $55k. Give here: https://ow.ly/u4Fp50YQO0T#MEAction A huge thank to our anonymous donor & all who are giving! #pwME #MECFS #LongCovid

📣 #LongCOVID Community 📣 Thank you to EVERYONE who took action over the last few days! Your phone calls & emails resulted in 14 senators signing on to the FY27 #FundLongCOVID Dear Colleague letter to Senate appropriators for over $210 million in care & research funding! 1/x

📣#LongCOVID Community📣 THANK YOU to the almost 600 folks who've emailed & called their Senators! Sunday emails & voicemails CAN move the Senate on Monday! Senate FY27 #FundLongCOVID "Dear Colleague" deadline extended to Monday AM. @lccampaign.bsky.social free, customizable tools here: 1/x

600!!! Incredible! Please keep spreading to word for people to call if they are able to help get LC appropriations funding. Details below and on LCC’s timeline.