Positive updates! - We are closer than ever to getting the ME/CFS Research Roadmap funded. - The Office of the Surgeon General is ready to work with us. Take action: -Leave a public comment about Medicaid. - Join our advocacy working group. - Donate More info & links: https://ow.ly/gkv150Zs2gx

Tens of thousands of dollars of off-label meds & treatment experiments & I’m still mostly bedbound & too sick to work/socialize/do anything but exist & suffer for years on end. No research funding = no validated treatment = millions of young lives rotting away #MEAwarenessDay #GreatestMEdicalScandal

If you can, please join me in supporting Kate! Their story is eerily recognizable. Kate is super kind and knowledgeable. ✌️

Kate Violette@kateviolette.com · last mo.

Hello friends near and far 💜 I've reached the end of my savings, frustratingly, just as we've solved the root mystery of my illness (it's Lyme) and are seeing continued success with treatment. I'm asking for your help in bridging the gap between now and when I can hopefully work full-time again.

🧠 What if #LongCovid is, in part, a disorder of dopamine? Our new commentary explores how disrupted dopamine signaling may help explain fatigue, brain fog, and autonomic dysfunction, and what this could mean for future therapies. Open access link: shorturl.at/vLAfU

Chantzy@chantzy.bsky.social · 4w ago

"Our findings provide compelling evidence that long COVID involves the loss of dopamine-releasing neurons," says Dr. Jeffrey Meyer, senior scientist at the Brain Health Imaging Center, Canada Research Chair medicalxpress.com/news/2026-07...

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

Justine Barron@jewstein3000.bsky.social · last mo.

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...

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...

Media Won’t Stop Psychologizing Long Covid

Media outlets that trumpet their journalistic integrity have used their prestige to launder an unproven, anti-science conspiracy theory about Long Covid.

fair.org

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

Justine Barron@jewstein3000.bsky.social · last mo.

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...

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?

ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

YouTube video by Broken Battery

youtu.be

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

Eric Topol@erictopol.bsky.social · 2mo ago

Important #LongCovid finding of auto-antibodies in patients directed to neural tissue, and then, by transferring the antibodies, recapitulated the disease symptoms in mice @cellcellpress.bsky.social @virusesimmunity.bsky.social cell.com/cell/abstrac...

The ME/Chronic Fatigue Syndrome community:

First Time Meme - The Ballad Of Buster Scruggs

Alt: First Time Meme - The Ballad Of Buster Scruggs, James Franco on a scaffold in a white button-down work shirt looking to his left and saying “first time?” to the unseen person beside him. He’s got a noose around his neck.

static.klipy.com

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...

Long Covid Advocacy@longcovidadvoc.com · 2mo ago

🧵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

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...

1) 🇪🇺 The controversial European project on Long Covid includes a randomized trial on amygdala retraining and online CBT. In a preliminary analysis, both fared no better than usual care. 2)… | ME/C...

1) 🇪🇺 The controversial European project on Long Covid includes a randomized trial on amygdala retraining and online CBT. In a preliminary analysis, both fared no better than usual care. 2) This is...

linkedin.com

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

WIRED@wired.com · 2mo ago

Six years since the height of the pandemic, the scientific community remains baffled by long Covid. But there might finally be a way forward for long Covid treatment—if only you were allowed to talk about it.

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 💌 jason_kehe@wired.com

jaSon kehe

Visit the post for more.

jasonkehe.com

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: mail@wired.com

Long Covid Advocacy@longcovidadvoc.com · 2mo ago

🧵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

#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. mail@wired.com

Long Covid Advocacy@longcovidadvoc.com · 2mo ago

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: mail@wired.com

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

James L. Sutter@jameslsutter.bsky.social · 3mo ago

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

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

Adam@abrokenbattery.bsky.social · 3mo ago

George Monbiot describes the treatment of #MECFS as “The Greatest Medical Scandal of the 21st century”. Repost of the introduction to my 27-minute explainer video for #MEAwarenessMonth — now optimised for phones.

@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

Adam@abrokenbattery.bsky.social · 2mo ago

“This is not a life, it is miserable. So how do I feel? Not even human anymore.” A 36-year-old woman with severe #MECFS confined to bed, on oxygen and a feeding tube, unable to tolerate light, sound or vibrations. Clip from Swiss TV