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sam

@paintingsbysam.bsky.social
457 followers 283 following 0 posts

Former hcw with Myalgic Encephalomyelitis aka ‘the living death’ aka ME/CFS x16 yrs LandBack AbolishICE 🍉 “Like a bird in the tree, the prisoners must be free” Bob Marley

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Reposted by sam
Sue Poncin @sueponcin.com · 04/10/2026
“Imaging findings revealed lower overall cerebral blood flow among participants with post-COVID condition.” Left postcentral gyrus - touch, pain, right side body position Right middle cingulate cortex - turns decisions into physical movements What Long Covid has done to me. Every single day.
radiologybusiness.com
MRI links long COVID fatigue to reduced cerebral blood flow
The study also distinguishes between feeling fatigued and becoming progressively less able to maintain performance post-COVID.
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Oliver Willis @owillis.bsky.social · 07/10/2026
Look how easy it is to frame this issue! This handsome writer did it and he’s not very smart www.dailykos.com/stories/2026...
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mtsw @mtsw.bsky.social · 07/10/2026
imagine if the mainstream media covered Republicans' number one donor — the biggest political donor in US history! — and his controversial views with as much scrutiny as they covered Hasan Piker's
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Alem Matthees @alemmatthees.bsky.social · 07/10/2026
Scary facts in #DecodeME presentation (Ponting): Stigmatised illness. Symptoms not always believed. 75% of people with #ME/CFS say they have little or no access to healthcare. One in four patients are housebound or bedbound. Across Europe, it takes nearly seven years on average to get a diagnosis.
youtube.com
Decoding ME: ME/CFS genetics and biomarker studies with Professor Chris Ponting, 24 September, 2026
YouTube video by ME Support
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Lucibee @lucibee.bsky.social · 07/10/2026
'Recovery' was always a big problem for the PACE trial, to the extent that they didn't actually mention it at all in the main trial paper in 2011. Discussion of it was relegated to a later paper in 2013, which also contained a metric tonne of fudge, because they knew they were in trouble over it.
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Alem Matthees @alemmatthees.bsky.social · 07/10/2026
The #PACEtrial recovery song by the late Graham McPhee uploaded to Youtube around 2014, which along with his more serious videos on the same channel, was used to argue that he was part of an organised campaign of harassment when he submitted a FOIA request for the fitness data from the PACE trial.
youtube.com
6: ME Recovery Song
YouTube video by MEAnalysis
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Tom Kindlon @tomkindlon.bsky.social · 07/10/2026
New CDC study Characterizing Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Symptom Burden, Functional Impairment, and Comparison With Adults www.jpeds.com/article/S002... #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Objectives
To characterize the clinical, functional, and educational characteristics of adolescents with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and compare selected illness domains with adults in the Multi-Site Clinical Assessment of ME/CFS (MCAM) study.
Study design
Baseline cross-sectional data from adolescents aged 10–17 years enrolled in MCAM were analyzed. Standardized measures included the Short Form-36 (SF-36v2), CDC Symptom Inventory (CDC-SI), Multidimensional Fatigue Inventory (MFI-20), and selected domains of the DePaul Questionnaire. Descriptive statistics characterized the pediatric cohort and bivariate analyses compared adolescents with adults enrolled in MCAM.
Results
Forty adolescents (mean age 15.3 years; 52.5% female) were included. Mean illness duration was 4.0 years. Educational disruption was substantial: 64% received homebound or homeschool instruction, 89% missed school because of illness, and participants missed a mean of 10.8 school days during the preceding month. Physical health-related quality of life was substantially impaired. Persistent post-exertional malaise (PEM), unrefreshing sleep, fatigue, and neurocognitive symptoms were common. Compared with adults (n = 595), adolescents had shorter illness duration and better physical functioning, vitality, and social functioning, whereas mental health scores were similar. Adults reported greater burden across several physical symptom domains although many between-group differences were small.
Conclusions
Adolescents with ME/CFS experience substantial multisystem symptom burden, impaired physical functioning and educational disruption. Many core clinical features were similar to those in adults, supporting the need for early recognition and appropriate clinical and educational support.
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Melody Schreiber @melodyschreiber.com · 01/10/2026
Okay that was easy as hell, everyone go get pictures of your tits
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 24/09/2026
Find every talk here: bsky.app/profile/exce...
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Aaron Rupar @atrupar.com · 30/09/2026
I for one think it’s bad that the president can just say crazy stuff all day every day and 99% of it doesn’t make the news because we’ve normalized having an insane president
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Billy Hanlon @bhanlon15.bsky.social · 30/09/2026
Boston: 'Warriors’ Kristaps Porzingis out indefinitely with unspecified health issue' 'According to a report from The Athletic, Porzingis said he was diagnosed with postural orthostatic tachycardia syndrome (POTS).' www.boston.com/sports/bosto...
boston.com
Warriors' Kristaps Porzingis out indefinitely with unspecified health issue
Former Celtics big man Kristaps Porzingis will miss the Warriors' trip to Hawaii as he deals with another health issue.
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Jared Yates Sexton @jysexton.bsky.social · 26/09/2026
Just helping with editing here. These bots aren’t sentient. They’re doing what they’re programmed to do. OpenAI, a private company supposedly bound by laws, committed federal crimes.
Screenshot of BBC article: OpenAI bots (struck through) meddled with multiple US government agency sites
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#MEAction Network @meactnet.bsky.social · 23/09/2026
Scientific Director Jaime Seltzer @exceedhergrasp1.bsky.social reporting live (virtually) from the NIH From Mechanisms to Medicine conference. #pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #ChronicIllness #NIH
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Kat Abughazaleh @katmabu.bsky.social · 23/09/2026
My notifs have been filled with people realizing they should get tested! This is a topic I love educating people about so AMA about narcolepsy and I’ll answer in the morning (bc I’m sleepy rn)
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George Monbiot @georgemonbiot.bsky.social · 21/09/2026
Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george at monbiot dot info. Thanks.
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Minestrone Monster @minstronemonster.bsky.social · 21/09/2026
A harrowing thread of responses here demonstrating not just a failure to treat patients with ME, but an institutional insistence on persecuting, abusing, gaslighting and discrediting them. People have died. People will die. Lives have been destroyed. The scale of the injustice is staggering.
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Dilek Sayedahmed @dileksayedahmed.bsky.social · 19/09/2026
I truly, deeply, sincerely do think the guy flipping burgers at McDonalds should be able to afford rent, bills, and groceries with his paycheck alone. That's kind of the whole point of having a job and I can't believe this is considered a radical position.🤷🏽‍♀️
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Iron Spike @ironspike.bsky.social · 19/09/2026
I’ll take this a step further and say, I believe we should be able to support an average-sized family on a single income at what we determine to be the minimum wage. A lot of Boomers got this. But for whatever reason, we’re considered ridiculous for proposing it.
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Kristen Lopez @kristenklopez.bsky.social · 11/09/2026
As an actual disabled critic, BEING HEUMANN is a landmark for disabled representation that abled audiences aren't going to immediately grasp its power. An essential piece of disability history in an era when our rights are being eroded. My review is live: thefilmmaven.com/being-heuman...
thefilmmaven.com
Being Heumann Review: The Disability Representation We've Been Waiting For
We finally broke the Tod Browning "Freaks" record for most disabled cast members!
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Wajahat Ali @wajali.bsky.social · 13/09/2026
MAGA and Trumpism in a nutshell. He ruins everything. Congrats, America. www.washingtonpost.com/style/2026/0...
washingtonpost.com
Kennedy Center could close as early as Tuesday, warns of bankruptcy, documents show
Officials said the center is facing “certain financial collapse” within weeks, insist that adding President Donald Trump’s name may be the only way to avoid bankruptcy.
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jamelle @jamellebouie.net · 14/09/2026
this guy is one of the architects of a war that might rank as one of the worst strategic missteps in american military history and here is on CBS getting a softball interview about his feelings
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Amy Maxmen, PhD @amymaxmen.bsky.social · 14/09/2026
Another unvaccinated person has likely died of measles. www.nytimes.com/2026/09/13/w...
nytimes.com
Unvaccinated Woman Likely Died of Measles Complications, Pa. County Coroner Says
The case is the third reported death linked to a rapidly expanding outbreak that has sickened more than 670 people in the state.
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 12/09/2026
But why would there be so much misinfo/disinfo swirling around debilitating illnesses like ME & Long Covid that affect millions of people? I dunno, maybe the corporations who should be on the hook are happy not having to pay up & manufacturing doubt is a great way to delay taking responsibility?
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026
MMR is 97% effective. BUT: - Some may not mount a robust enough immune response to vax for a variety of reasons - Protection CAN wane if there's been a major immune disruption, though this is rare - Most pertinent: intense, prolonged exposure to someone with measles can supersede protection
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David Corn @davidcorn.bsky.social · 12/09/2026
This is stochastic terrorism. Ted Cruz is an extremist encouraging violence.
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026
Or visit the masterlist here: bsky.app/profile/exce...
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Howard French @hofrench.bsky.social · 09/09/2026
Yep. www.nytimes.com/2026/09/09/o...
nytimes.com
Opinion | JD Vance Doesn’t Want to Help Married Parents. He Wants to Hurt Single Mothers.
Redistributing money from single working parents to married ones is not a pro-family policy.
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The Volatile Mermaid @ohnoshetwitnt.bsky.social · 09/09/2026
For the love of god someone please ask him when he thought Germany was great because I’ve got an idea.
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Dr Noor Bari @njbbari3.bsky.social · 09/09/2026
#COVIDisAirborne
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David Ho @davidho.bsky.social · 09/09/2026
The Lahaina fire in 2023 destroyed over 2,700 structures and killed at least 102 people, leaving 12,000 homeless. The disaster exacerbated the existing housing crisis in Hawaiʻi and Maui in particular, driven by vacation rentals and remote work, leaving many displaced families struggling to rebuild.
nytimes.com
The Long Road to Rebuilding Lahaina After the 2023 Wildfire (Gift Article)
Hawaii’s housing crisis was at a breaking point even before the fire. Since then, displaced families have struggled to rebuild their lives.
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Ben K. @benjaminkabak.com · 09/09/2026
They’re Nazis. We can stop beating around the bush.
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Lynn Stahl @msbtterswrth.altgov.info · 09/09/2026
America doesn't have kings. And we never will. Come out for the next No Kings rally on OCT 17, and tell Don and his flunkies to get fucked.
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Aaron Rupar @atrupar.com · 09/09/2026
Jeanine Pirro: "The president is very much aware of the cryptocurrency fraud that is being literally imposed upon Americans, and he is well aware of the danger to Americans"
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Richard Vallée @richardvallee.bsky.social · 07/09/2026
No one is more excluded from medicine than those of us suffering from discriminated chronic illnesses like ME/CFS, Long Covid, etc. Our exclusion is literally standard practice, fully intentional and considered "good". Physicians hate and mock us. We don't have the luxury to be against vaccines.
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 09/09/2026
OMF’s Clinical Trials Network Lite (CTN Lite) initiative will include treatment trials that use decentralized study designs, making the studies more accessible to people with more severe ME/CFS. 🔗Read more about CTN Lite: www.omf.ngo/introducing-...
omf.ngo
A new chapter in ME/CFS treatment research begins today—and your voice is essential to making it count. - Open Medicine Foundation
Learn more about CTN Lite, a research model designed to accelerate ME/CFS treatment trials and expand access.
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Eric Topol @erictopol.bsky.social · 02/09/2026
What is being done vs #LongCovid and other post-viral serious chronic illness? Not enough. www.nature.com/articles/d41...
nature.com
When do infections lead to long COVID? Scientists close in on triggers and treatments for post-viral syndromes
Hundreds of millions of people have long-term conditions as a result of an infection. Researchers are working out how to help them.
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Richard Vallée @richardvallee.bsky.social · 04/09/2026
To put into perspective how little has been done, about $2B of research on Long Covid has yielded less than the institutionally-sabotaged research on ME/CFS did with crumbs. Not a single useful thing has come out of LC research yet. Not even a single bit, tt has effectively been entirely wasted.
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Janet Johnson @jjohnsonlaw.bsky.social · 09/09/2026
Celebrating the election of neo Nazis in Germany is quite a choice.
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Tom Kindlon @tomkindlon.bsky.social · 09/09/2026
2/ I very rarely post on LinkedIn these days but decided to do a longer post today on this. With a lot of researchers posting less often if at all on X, more are communicating via LinkedIn. #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Tom KindlonTom Kindlon
 • YouYou
Assistant chairperson, Irish ME/CFS AssociationAssistant chairperson, Irish ME/CFS Association
8m •  8 minutes ago • Visible to anyone on or off LinkedIn
Today marks the 10th anniversary of a little known but important anniversary in the ME/CFS world. Ten years ago a psychiatrist, Peter White, of Queen’s University of London was forced to release some data from the PACE Trial he led which cost £5 million of UK taxpayers’ money (funding was received approximately two decades ago so it is the equivalent of around £9 million today).

The investigators themselves dubbed this the “definitive” trial of graded exercise therapy and cognitive behaviour therapy for CFS.

The data revealed, using the definition for the recovery the investigators committed to in their own published protocol, that neither CBT nor graded exercise therapy led to an increased rate of recovery. The PACE Trial investigators had been desperate for this data not to be released, with over £200,000 spent on legal fees fighting a Freedom of Information request from an Australian patient, Alem Matthees.

Like many of us, Alem was desperate to get the data rather than relying on the very questionnable spin/hype the investigators had been presenting. The PACE Trial investigators had vigorously, successfully fought other FOI requests relating to the recovery data. Alem effectively became an FOI expert and in a David-vs-Goliath battle, he won the case. Unfortunately all the effort badly affected his health and he has been bedbound with very severe ME since.

Anyway the data allowed a team including myself to reanalyse the trial. The image is a screenshot from our main reanalysis paper.

This FOI case and subsequent reanalyses played a significant part in guidelines for ME/CFS being changed in the UK and elsewhere.

A lot more could have been said but I thought I would keep it brief for busy LinkedIn users.
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Tom Kindlon @tomkindlon.bsky.social · 09/09/2026
10 years today, after a David vs Goliath FOI legal battle that damaged Alem Mathees, White et al were forced to release data from PACETrial (that cost UK taxpayers £5M) showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS. Please remind the world #MEcfs #PwME #CFS
 Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
Carolyn E Wilshire  1 , Tom Kindlon  2 , Robert Courtney  3 , Alem Matthees  4 , David Tuller  5 , Keith Geraghty  6 , Bruce Levin  7
Affiliations Expand

    PMID: 29562932 PMCID: PMC5863477 DOI: 10.1186/s40359-018-0218-3 

Abstract

Background: The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome. Reports concluded that both treatments were moderately effective, each leading to recovery in over a fifth of patients. However, the reported analyses did not consistently follow the procedures set out in the published protocol, and it is unclear whether the conclusions are fully justified by the evidence.

Methods: Here, we present results based on the original protocol-specified procedures. Data from a recent Freedom of Information request enabled us to closely approximate these procedures. We also evaluate the conclusions from the trial as a whole.
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T. Ryan Gregory 🇨🇦 @tryangregory.bsky.social · 09/09/2026
Viral infections are bad. Even common ones. Clean the air for FFS.
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Joanna Grossman @joannagrossman.bsky.social · 09/09/2026
Another unconscionable result of the GOP’s war on women. www.propublica.org/article/ecto...
propublica.org
Ectopic Pregnancy Deaths Have Nearly Doubled. It’s Worse in States With Abortion Bans.
With prompt and appropriate medical care, experts say, people shouldn’t die from an ectopic pregnancy. Women in Texas and Oklahoma have sued over delays in care, which, coupled with our new analysis, ...
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Thor Benson @thorbenson.bsky.social · 09/09/2026
I think that's true. I think he is very aware of crypto scams
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Mollie Katzen @molliekatzen.bsky.social · 09/09/2026
I am an ectopic pregnancy survivor who would have died had I not received a procedure that is now illegal in many states.
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🗽LOLGOP🗽 @lolgop.bsky.social · 09/09/2026
Sorry, Dems. You're going to have to confront Silicon Valley autocracy before they brick democracy.
patreon.com
Sorry, Dems, you're going to have to destroy Elon. Or he'll destroy you. | LOLGOP Studios
We must confront Silicon Valley autocracy before they brick democracy. I recorded an emergency “episode” of The Trillionaire Kill Chain this
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Faine Greenwood @faineg.com · 08/09/2026
“Elon Musk destroyed USAID as a mechanism for killing off as many of the global poor and non-white as he can before they kill him first (as he, insanely, believes)” is not a conspiracy theory. In truth, it’s very hard to conclude anything else.
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Max Kennerly @maxkennerly.bsky.social · 08/09/2026
If only the media had as much interest in the world's richest person, the primary funder of the Republican Party, who spoke at Trump's Inauguration and gave a Sieg Heil, once again declaring his belief "white solidarity is the only way to survive" as they do some Twitch streamer.
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Ryan Marino, MD @ryanmarino.bsky.social · 06/09/2026
Routine reminder that Bhattacharya is an economics researcher who has never practiced medicine and whose best known publication is overtly fraudulent. He has never done infectious disease research and has never treated a single virus or infection in his entire career. He’s likely never seen measles.
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ProPublica @propublica.org · 06/09/2026
Read the full story:
projects.propublica.org
“I Have Lost Everything”: The Toll of Cities’ Homeless Sweeps
Cities often take belongings — including important documents and irreplaceable mementos — when they conduct sweeps of homeless encampments. ProPublica gave notecards to people across the country so…
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Leah McElrath @leahmcelrath.bsky.social · 31/08/2026
GOOD NEWS: The headmaster of a school in Nepal received a phone call from a friend upstream about the deadly flooding on the way. He took quick action and saved 1,643 schoolchildren from certain death. The school was completely destroyed by the floodwaters.
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