Our beloved Alice Wong has joined the ancestors. It was one of the great honors of my life to call Alice my friend, co-author & co-conspirator. She was a true genius, a force of nature the likes of which the world has never seen before. I love you, Alice, and am equal parts grateful and devastated

Alice in her own words: bsky.app/profile/thra...

“With so many marginalized communities, we’re basically the oracles…we’re the ones who see shit before it happens.” In June 2020, I interviewed Alice Wong for TVU before she lost her ability to speak. I asked her how she’d first learned of SARS-CoV-2. She began with the 2016 election of Trump:

“Don’t let the bastards grind you down. I love you all.”

The Messenger-Inquirer, Kentucky, US. 10th November 1988 - thirty-seven years ago today. #myalgicencephalomyelitis #ebv #epsteinbarr #myalgice #mecfs #cfsme

Twenty years ago today. The Asheville Citizen-Times, North Carolina, US. 10th November 2005. #cfsme #mecfs #myalgicencephalomyelitis #myalgice

Sign up for these 2 workshops for #caregivers. 1. Nov. 16 @ 3 pm ET: 10 Lessons from 20 Years of Caregiving — Kim Moya ow.ly/gtAP50XlbZb 2. Nov. 22 @ 3 pm ET: Chronic Illness Caregiving for Youth, Teen, & Adult Children — Denise Lopez-Majano ow.ly/3IcV50XlbZh #pwME #ChronicIllness

#NEISvoid PSA TIL patients and caregivers can get free access to Elsevier papers! Email your request to [email protected] and include confirmation you are a patient. Turnaround is 48 hours. #LongCovid #MECFS

Without going into detail, #pwME #LongCovid ME (because I do not want to inflame an already overly inflamed situtation) the extent of the treachery & exploitation of medical neglect in post infection diseases is EXTRAORDINARY. People who start out being respectable become corruptible. Why? How? Why?

💙Continuing Nevra's advocacy work💙 Weakness and paralysis are not the same. In Severe ME/CFS, paralysis isn’t just “feeling weak” — it’s the body’s loss of nerve control over the muscles. Patients describe moments when the brain sends signals to move… but the body simply can’t.

10) The interview can be rewatched here:

9) Prof. Hughes wrote a new book about this called 'Psychology’s Quiet Conservatism' which can be found here: link.springer.com/bo... You can support David Tuller's work (only 1 day left to donate for his fundraiser) using this link: crowdfund.berkeley.e...

7) So rather than providing social safety nets, illness benefits, and medical services to people who have suffering in their lives, psychology participates in this bureaucratic effort to avoid those commitments.

6) Psychologists and their psychiatrist cousins have been at the forefront of characterising unexplained illnesses as psychiatric problems. This then becomes a political question as such explanations are popular among people who are concerned about spending money on disability.

5) Prof. Hughes then applies this to ME/CFS and medically unexplained conditions. The idea in psychology is that if a person cannot be established to be physically ill through some kind of biomarker, then it must be psychological.

4) Psychology identifies disability in terms of a person's ability to participate in the norms of society without ever questioning those norms. It focuses on individuals and the deficits in their repertoire of behavior.

3) He explains: "By encouraging people to look inside themselves for a change, you are guaranteeing that the world will carry on the way it is, which, of course, is deeply unjust and unequal. "

2) Hughes argues that the problems people encounter are usually systemic and require social and structural solutions. But psychology promotes a personal, libertarian view that blames the victim rather than the system.

1) Interesting interview of Prof. Brian Hughes by David Tuller. In his new book Hughes argues that psychology is not woke but that its methods are essentially conservative because it focuses on an individualistic view and ignores social context.

This is a very deft thread. A concise precis of our conversation on conservatism, capitalism, and disability Thank you @mecfsskeptic.bsky.social #MECFS #LongCovid @davetuller1.bsky.social

Yes, it's excellent! I've just seen it. Thanks to @mecfsskeptic.bsky.social for applying his usual care in highlighting @bmhughes.bsky.social's key points!!!

A long excerpt from this 1987 interview with Beth Bighley, a patient with chronic EBV, now known as #MECFS This could’ve been written by someone last year with #LongCovid and/or ME. “My parents' reaction was one of relief that I did have something physically. But also frustration, 1/

Thread for Day 3 of the @icancmeresearch.bsky.social conference. My attempt at simultaneously sharing on X and Bsky.

An early reference to 'myalgic encephalomyelitis' in the Australian press from this day forty-four years ago. The Age, 7th November 1981. #mecfs #myalgicencephalomyelitis #myalgice #cfsme

ADVICE WANTED: If you're an ME/CFS, spoonies chronic pain person, do you have any resources for completely over hauling self-expectations and managing/planning a limited energy budget? I'm confronted with the reality that I'm no longer capable of what I was or want to be and it's Fing awful.

Hi all, across our six centers serving people with spinal cord injury, stroke, TBI, #LongCOVID, #MECFS, chronic #lyme, new parents, cerebral palsy and many other conditions, roughly 20% are dependent on SNAP benefits for survival. So we're trying to pull together a food drive! 1/

Berkeley's crowdfunding campaign for Trial By Error, which investigates problematic psycho-behavioral research involving ME, ME/CFS, Long COVID, etc., has reached 98% of the goal, with one day remaining: crowdfund.berkeley.edu/project/47768

🔥This is a killer quote by @tinywriterlaura.bsky.social in 'Awakened': 👉denoting when the CDC 'renamed' ME to CFS in 1988 after the outbreak in Lake Tahoe. #pedanticzebra

In what order should I watch Dario Argento's fillums? Susperia set a high bar. The Phenonemen cemented it. Tenebrae arrives shortly. I can't afford to buy them all, so have to pick the best ones and the best route through. Ta. xx

A new prize will recognize excellent fiction written for readers between the ages of eight and 12.

One last in-joke for the road: Hope you enjoyed this thread about #MCAS: a disease you think about so little that you didn't notice that it was about #MECFS, actually. @lastweektonight1.bsky.social @thedailyshow.bsky.social #JohnVsJonVsME

While the Lightning Process is an extreme example, sister therapies still encourage people with a variety of complex diseases to think their way to better health. But there are far, far better therapies & management strategies out there! If you'd like to reply with resources, that can be helpful!

Other children reported severe depression after the 'therapy' as well. Leading us to all wonder: The Lightning Process. How is this Still a Thing? @lastweektonight1.bsky.social @thedailyshow.bsky.social #TheGreatestMEdicalScandal #JohnVsJonVsME podbean.com/media/share/...

But telling someone they can be cured of illness if they want it badly enough takes an incredible toll, especially on the most vulnerable. People have attempted to take their own lives after the Lightning Process-- including one 13-year-old boy. nrk.no/livsstil/for... #JohnVsJonVsME

Now this may seem absurd. But imagine you were struck down with a disease as severe as #MECFS. Imagine being told you can think your way out. But only if you want it badly enough. And if you don't recover, it's your own fault for having negative thoughts. @lastweektonight1.bsky.social

Please check out this thread @lastweektonight.com and @johnvsjonvsme.bsky.social #JohnVsJonVsME #GreatestMEdicalScandal Folks w #SevereME have suffered for DECADES in dark silent rooms & this is what's offered. @johngreensbluesky.bsky.social @hankgreen.bsky.social @markruffalo.bsky.social

Now, any therapy making these kinds of claims would have to be revolutionary, right? Or not. When you experience a symptom--and I swear, this is true--the Lightning Process advises you shout "STOP!" at top of your lungs, and turn in a circle. @thedailyshow.bsky.social @lastweektonight1.bsky.social

Parker, inventor of the process, taught courses that identified him as a "clairvoyant spiritualist" before he focused his grift on sick people, claiming he could “help you to completely recover permanently" from #MECFS with “no possibility of relapse”. #JohnvsJonvsME buzzfeed.com/tomchivers/i...

Please check out this thread/homage @lastweektonight.com and @johnvsjonvsme.bsky.social #JohnVsJonVsME #GreatestMEdicalScandal The levels of grift 😭 @johngreensbluesky.bsky.social @hankgreen.bsky.social @markruffalo.bsky.social

So you'd think there would be FDA-approved drugs for #MECFS, well-researched management strategies, and excellent research funding at big-name institutions like NIH. Well... @lastweektonight1.bsky.social @thedailyshow.bsky.social #TheGreatestMEdicalScandal #JohnVsJonVsME

Please check out this thread/homage @lastweektonight.com and @johnvsjonvsme.bsky.social #JohnVsJonVsME #GreatestMEdicalScandal Dismally low quality of life for millions of people globally and yet immensely neglected @johngreensbluesky.bsky.social @hankgreen.bsky.social @markruffalo.bsky.social

#MECFS & #LongCOVID are complex, but they share a unique feature called #PEM: a flare of symptoms after physical or even cognitive activity, like reading a complicated article or a thread imitating the style of one of your favorite news journalists. #JohnVsJonVsME @lastweektonight1.bsky.social

Myalgic encephalomyelitis, sometimes called #MECFS, is an infection-associated illness. That means it is often triggered by an infection, often viral. About half of those with #LongCOVID meet the diagnostic criteria for #MECFS, so it's a HUGE problem. #JohnVsJonVsME @lastweektonight1.bsky.social

First, you should know that this is NOT a real segment! We are not trying to claim that @iamjohnoliver.bsky.social. The previous image is ST:TNG's 'Crystalline Entity' meets 'Graphic Design is our Passion', and we feel this should be proof enough. Got it? Good. @lastweektonight1.bsky.social

Yes please check out this amazing thread by @exceedhergrasp1.bsky.social, @lastweektonight.com ! #JohnVsJonVsME @johnvsjonvsme.bsky.social Also tagging @johngreensbluesky.bsky.social @hankgreen.bsky.social @markruffalo.bsky.social for a glimpse of the absurdity & abuse of #GreatestMEdicalScandal

A few advocates have been pushing for Jon Stewart or Last Week Tonight to do some work in this space for several years. Too many ppl feel like they can't touch medicine, no matter how outlandish, because it feels outside their area of expertise, but this seems pretty clear

Actual @lastweektonight.com is here? Resharing an advocacy thread from last year! :D

Human Right First has a petition to free Ali. Please sign and share: humanrightsfirst.quorum.us/campaign/Fre...