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tiredthomas.bsky.social

@tiredthomas.bsky.social
47 followers 127 following 49 posts

me/cfs since 1999 (they/he)

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Sonic J she/her @sonic25.bsky.social · 12/10/2026
Maybe we're reproachful because the courses of treatment we were prescribed made us permanently disabled. Reproachful is a logical thing to be here. And correctly pointing out that "treatment" wrecked what health we had doesn't equal "combativeness". It's just honesty.
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Hayes @dirtcupart.bsky.social · 18h
is anyone else afflicted by a terrible curse
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ME/CFS Science @mecfsscience.org · 12/10/2026
1) 🧬 We did a new genetic analysis using DecodeME. We leveraged a database on chromatin openness in the human brain. More openness means DNA is accessible and potentially active in various cell types. The graph below shows the results for ME/CFS and various other diseases.
Stacked panels comparing ME/CFS with 19 brain-related traits: heritability enrichment (−log10 p) across 107 brain cell types from the Li et al. 2023 chromatin atlas. ME/CFS shows signal in cortical excitatory neurons and in striatal medium spiny neurons, but none in microglia or other glia; Alzheimer's disease and multiple sclerosis show the opposite pattern, with signal only in microglia and other non-neuronal cells.
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Ilhan Omar @ilhanmn.bsky.social · 12/10/2026
I’m ok. Make no mistake: this is an attempt to target political enemies and weaponize federal law enforcement. For ten years, Trump has targeted me with baseless lies and smear campaigns. This is just the latest escalation in his campaign of political intimidation. I will not be silenced.
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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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Robert Dallas Gray @robertdallasgray.com · 08/10/2026
one of the advantages of having tried to understand marxist theories about capital is that it’s always immediately bleedin obvious that capital will never ever allow economies of automation to result in increased leisure
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Tom Kindlon @tomkindlon.bsky.social · 05/10/2026
I was one of a number of patient scientists and advocates who was interviewed for this sympathetic, open access paper "Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis" www.sciencedirect.com/science/arti... #MEcfs #PwME #epatient #epatients #CFS
Abstract
It is usually assumed that patient and doctor know strictly different things: the patient knows the phenomenological aspects of their illness, and the doctor knows its medical aspects. I present a case study, that of myalgic encephalomyelitis, wherein, due to severely dysfunctional institutional knowledge production and transmission mechanisms, the medical aspects of the illness are on the whole better understood by sick people than by their doctors. Indeed, lay scientists within the patient community disseminate and produce science on their disease, ensuring that patients as a whole have reliable knowledge about their disease. By contrast, systemically produced and systemically maintained ignorance on the part of medical professionals is the norm, and may be beyond the specific case study I present.
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Kate Linthicum @kate-linthicum.bsky.social · 05/10/2026
NEW: The U.S. deported a torture survivor back to Nicaragua, where he was immediately jailed again. www.latimes.com/world-nation...
latimes.com
U.S. sends torture survivor back to Nicaragua, where he is immediately jailed again
Jeffrey Jarquín, a former Nicaraguan political prisoner who said he was tortured for opposing President Daniel Ortega, was jailed at Managua’s Modelo prison immediately after the U.S. deported him, ad...
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Hayes @dirtcupart.bsky.social · 04/10/2026
like i just feel like we r not interrogating what is feminine and what is masculine and why and we're just building gender ideas on top of that as though the concept of masculinity and femininity are preordained
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Ian James @ianjames.bsky.social · 02/10/2026
Gov. Newsom vetoed a bill that would have given Native tribes greater say on California water policy decisions. www.latimes.com/environment/...
latimes.com
Native tribes denied greater say in water decisions with Newsom veto
Newsom vetoed a bill that would have given Native tribes greater say on decisions about water. One tribal leader said it shows he "doesn't care about tribes."
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CN Lester 🏳️‍⚧️ @cnlester.bsky.social · 02/10/2026
'These photographs should be hanging in MoMA or the Whitney' - huge thanks to @sandyernestallen.bsky.social for this beautiful piece on Loren Rex Cameron. 'Body Alchemy' was a sacred text when I bought it, aged 19, in 2003. It still is, to be honest.
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Amy Maxmen, PhD @amymaxmen.bsky.social · 02/10/2026
The Ebola outbreak in Congo is now exploding in North Kivu, where 34% of Ebola patients are being treated in bare-bones health facilities instead of Ebola Treatment Units, according to @msf.org 3,982 confirmed deaths 😔 www.doctorswithoutborders.org/latest/ebola...
doctorswithoutborders.org
Ebola outbreak spreading like “wildfire” across North Kivu
The province is bearing an increasing share of the Ebola burden in DR Congo, while access to specialized care remains insufficient.
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mossworm.bsky.social @mossworm.bsky.social · 02/10/2026
juridical personhood is the thing the bros are perhaps trying to create; which, much like nearly everything they're trying to use genAI for, already existed just fine
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Chase Strangio @chasestrangio.bsky.social · 30/09/2026
chasestrangio.substack.com/p/we-keep-fa...
chasestrangio.substack.com
We Keep Falling For The Same Anti-LGBTQ Attacks.
The attacks are not new but our willingness to fall for them is increasing.
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George Monbiot @georgemonbiot.bsky.social · 28/09/2026
We can spend our lives debating the justifications (I more or less have); but we are wasting our time. What we need is a massive clampdown on the influence of money over politics, including lobbying transparency, campaign finance reform, an end to the revolving door between politics and lobbying.
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George Monbiot @georgemonbiot.bsky.social · 28/09/2026
That’s because the decision has already been made. The issue being debated is merely the post-hoc justification. Where decisions happen and where debate happens are different places. The idea that debate leads to policy outcomes is a fiction designed to create an impression of democratic consent.
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George Monbiot @georgemonbiot.bsky.social · 28/09/2026
Then the government must find a find of selling this policy, which might be very harmful. It will argue that it’s essential for “growth”, “jobs”, “international standing” etc. Opponents will then argue these claims, engaging in the great democratic tradition of “debate”. But debate is irrelevant.
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George Monbiot @georgemonbiot.bsky.social · 28/09/2026
Here is how politics, in most cases, works: Rich and powerful interests, whether in fossil fuels, finance, big tech, media, meat, pharma or foreign governments, make a demand, and use their sophisticated tools to persuade a government to adopt it. The government adopts it. Please read whole🧵
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Hayes @dirtcupart.bsky.social · 28/09/2026
if u r disabled and have circumstances that prevent u from finding the beautiful acceptance of a queer community someone who has that is always going to smugly tell you to "get off the internet" and then not believe you when you tell them that's not rly possible
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Simon Kuestenmacher @simongerman600.bsky.social · 28/09/2026
Every glaciated region on the planet lost ice for four years in a row now. From 2023–2025 alone, glaciers lost around 1,400 gigatonnes of ice, equivalent to roughly 560 million Olympic swimming pools (the official weird measure for anything water related). Source: bit.ly/WMOStateofWa...
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WingsNDNSilver @wingsndnsilver.bsky.social · 28/09/2026
THIS. I am both immunocompromised AND immunosuppressed. I mask EVERYWHERE. I also have not had so much as a cold, not a single communicable bug, in 6.5 years. [Multiple autoimmune disease is more than enough, believe me.]
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Kelly @broadwaybabyto.bsky.social · 26/09/2026
Disabled people make society uncomfortable. Left or right…. It doesn’t matter. People want to believe it can’t happen to them. That if they become disabled there will be a magic “fix”. We challenge their denial, so they deny us solidarity and support. That’s ableism.
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peony gent ✸ @peonygent.bsky.social · 26/09/2026
Incredibly proud of Mads for sharing her story, the comics community can still be a very dangerous place for young people. Please take the time to read and share ❤️
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Tom Kindlon @tomkindlon.bsky.social · 24/09/2026
As many of you already know, @georgemonbiot.bsky.social has published another hard-hitting article on ME in the Guardian today. Great to see such coverage, especially as the Guardian published some rubbish by others before www.theguardian.com/commentisfre... #MEcfs #PwME #MyalgicEncephalomyelitis
Opinion
ME / Chronic fatigue syndrome
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed
George Monbiot
George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a shocking social crisis playing out behind closed doors
Thu 24 Sep 2026 01.00 EDT
Somebody sitting on a bed looking at a wall with a display of negative past medical experiences
 Illustration: Bill Bragg/The Guardian
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Aaron Reichlin-Melnick @reichlinmelnick.bsky.social · 23/09/2026
ANOTHER death in ICE detention which appears likely to be the result of medical neglect. A diabetic who told his family members he wasn't receiving regular insulin shots OR getting diabetic-appropriate meals just died in custody. The U.S. prison-ICE detention-industrial complex kills.
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Unicorn Riot @unicornriot.bsky.social · 23/09/2026
Canadian Oil Giant Enbridge Builds Unauthorized Pipeline Bypass Following 1.3 Million Gallon Spill [VIDEO]
unicornriot.ninja
Canadian Oil Giant Enbridge Builds Unauthorized Pipeline Bypass Following 1.3 Million Gallon Spill - UNICORN RIOT
After the largest oil and gas spill in Wisconsin's history, Enbridge's defiance of legal requests raise serious questions about the state’s ability to regulate large, multinational corporations and it...
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Tom Kindlon @tomkindlon.bsky.social · 11/09/2026
Media gaslighting = patient harm chroniclivingtherapy.com/brain-retrai... Screenshot from latest edition of the Chronic Living Therapy @chronicliving123.bsky.social email bulletin #MEcfs #PwME #LongCovid #CFS #chronicillness @lammasleaves.bsky.social
Photo of someone looking confused with the following text

Media gaslighting = patient harm
Recently the i newspaper in the UK published a gushing article about a not-yet-even-published piece of non-medical academic research into 75 people who 'recovered' from 'CFS' with various 'brain retraining' programmes. (Sorry about all the 'speech marks' but there's no other way to write about it...)

The research has been challenged from several well-informed quarters already. It made me think of the harm that is done to patients when we and our families and friends read such publicity. I saw some other patients on social media commenting and reached out.

Kirsty, a patient who has had ME/CFS since the 1990sl, responded by writing about how reading such articles has affected her and those around her. 

Read 'Brain Retraining Merry-go-round'
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Count Avi Henriques 🩸 @legalizegoblins.bsky.social · 11/09/2026
Anyway. Shana tova, everyone. May the year 5787 bring justice.
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Elke Hausmann @drelke.bsky.social · 10/09/2026
Hm, where else have we recently heard about ‚readiness for recovery‘ ?! What do these researchers think, that this is a rare quality among patients, whose default (by definition, since they’re still ill) is wanting to remain ill? How about ‚readiness to believe any old ****‘?? #LongCovid #ME
What does "readiness for recovery" mean?
The paper does not explain what Abbott means by
"readiness for recovery" or how she determines if this quality is present. This procedure appears similar to what LP participants have reported-that they must agree in advance that the intervention works as advertised. Under such circumstances, findings cannot be extrapolated to anyone who does not first affirm that The Switch is as effective
as claimed.
Requiring people to agree beforehand that an intervention can cure them clearly generous
enormous issues in interpreting any findings. It would be hard, if not impossible, to measure the level of bias that such a requirement would
introduce.
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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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Madison Pauly @msjpauly.bsky.social · 08/09/2026
Former Levi's exec Jennifer Sey fanned a culture war over trans athletes in a league that has none—to the benefit of her clothing brand, XX-XY Athletics. "I know my mom isn’t that invested" in the WNBA, her son told me. "But...I guess the vultures will circle." www.motherjones.com/politics/202...
motherjones.com
The woman profiting off the WNBA's trans panic
Sophie Cunningham set off a firestorm. Jennifer Sey was ready to capitalize.
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Adam @abrokenbattery.bsky.social · 09/09/2026
Families of children with ME/CFS have faced similar accusations in the UK for decades. A 2017 Action for ME survey found that 22% of families had faced a safeguarding or child-protection referral, with almost half involving allegations of FII. web.archive.org/web/20190429...
Excerpt from the action for ME report
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Adam @abrokenbattery.bsky.social · 09/09/2026
TW: German TV report from August about the Gaberdil family, whose daughter, severely ill with #MECFS, was admitted to a psychiatric ward against her parents’ wishes after her illness was wrongly treated as Munchausen syndrome by proxy. They have not seen her since December.
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David Tuller @davetuller1.bsky.social · 09/09/2026
A study of The Switch, New Zealand's version of the Lightning Process, has generated some meaningless results--yet the paper suggests the findings are so robust that it "could be argued" that no RCT is needed to recommend the intervention. Hm. virology.ws/2026/09/09/t...
virology.ws
Trial By Error: A Study of The Switch, New Zealand's Homegrown Version of the Lightning Process, Yields Meaningless Findings | Virology Blog
By David Tuller, DrPH The Switch is a New Zealand variant of the Lighting Process, the so-called “mind-body” intervention created by a Phil Parker, a Britis ...
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Adam @abrokenbattery.bsky.social · 05/09/2026
“My daughter was told to exercise and ended up in a wheelchair... For GPs not to be aware of the harm that exercise can do is hugely damaging.” Janet Sylvester (MEAction Scotland), speaking about her daughter Emma, who has ME, while giving evidence to the Scottish Parliament. Sept 2026.
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Hayes @dirtcupart.bsky.social · 13/08/2026
it's also genuinely insane to experience like middle school bullying as a grown adult from other grown adults (who are also queer) who make fun of you for like. enjoying anime or having been in theatre in highschool. like are u happy u get to be the bully now or something r u making up for lost time
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Jason Song Quinn (Comms Open) @hulkhoquinn.bsky.social · 12/08/2026
The thing about the comics industry under the boys club, those 60+ victims are probably more “blacklisted” than any of these guys ever will be. Then w/ this announcement, it tells all their future victims, don’t bother either. Never forget, a lot of these victims just wanted to make comics too.
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Ben Schwarz @benschwarz.bsky.social · 03/08/2026
Australia’s eSafety commissioner buried a report (released Friday afternoon) that shows the under 16 social media ban didn’t tangibly reduce teen social media use, and also resulted in parents tuning out of kids usage. We traded our privacy for no reason. theconversation.com/more-than-80...
theconversation.com
More than 80% of kids still using social media despite ban, new eSafety report finds
The report provides more evidence Australia’s world-leading social media ban isn’t going to plan.
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Guardian US @us.theguardian.com · 03/08/2026
Exclusive: court records reviewed by the Guardian show that procedures included force-feeding, intravenous forced hydration and involuntary blood draws
theguardian.com
‘Stark example of brutality’: Trump’s ICE used court orders in plan to force-feed at least 10 hunger strikers in detention
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Tiago Dias @tiagodf.bsky.social · 03/08/2026
After unfurling and displaying a Palestinian flag while performing, they became the subject of a police investigation, which led to them being banned from the country.
theguardian.com
Massive Attack speak about ‘surreal experience’ of being banned from Singapore over Palestinian flag
British band say they are ‘proud to have made this impromptu expression with our fans in Singapore’, where open display of all foreign flags is banned
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Open Measures @openmeasures.io · 31/07/2026
NEW: Our researchers have discovered that users of a far-right imageboard notorious for coordinated harassment campaigns have developed at least three custom AI tools meant to help them "dox" their targets. openmeasures.io/soyjak-ai-do...
openmeasures.io
Users on This Far-Right Imageboard Are Building ‘Fully Autonomous AI Doxxing’ Tools - Open Measures
Open Measures builds accessible and transparent products to contextualize the spread of harmful online content that impacts public discourse and global events.
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Tom Kindlon @tomkindlon.bsky.social · 03/08/2026
ME/CFS and Long COVID Demonstrate Similar Bioenergetic Impairment and Recovery Failure on Two-Day Cardiopulmonary Exercise Testing by @sunsopeningband.bsky.social et al link.springer.com/article/10.1... Screenshot from latest Science for ME weekly update #MEcfs #LongCovid #PwME #CFS #ME #MyalgicE
ME/CFS and Long COVID Demonstrate Similar Bioenergetic Impairment and Recovery Failure on Two-Day Cardiopulmonary Exercise Testing — Davenport et al
"In both males and females, VO2 and workload were significantly different between patients and non-disabled controls, and with larger effect sizes at [Ventilatory Anaerobic Threshold] than at maximal exertion."
Article | Thread
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Emily Bregel @emilybregel.bsky.social · 02/08/2026
A Phoenix man from Egypt has spent the last three months confined in a decommissioned hotel in Equatorial Guinea, after ICE deported him there without warning. @tucson.com tucson.com/news/local/b...
tucson.com
Arizona man languishes in African hotel after third-country deportation
A 30-year-old man, Ahmed Soliman, is confined in a decommissioned hotel in Equatorial Guinea after being deported there by ICE without warning. He faces the threat of return to Egypt, where he may fac...
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elia ayoub @ayoub.bsky.social · 02/08/2026
Nearly 3 years of a genocide, and this morning Israel killed a number of children and adults in Gaza yet again. The video is shared by Mosab Abu Toha (obvious trigger warning: substack.com/@mosababutoh...) Nearly 3 years of dead children, every single day
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Asawin Suebsaeng @swin24.bsky.social · 02/08/2026
an immigration lawyer working on some of these Haitian cases today says an ICE officer told them, re: the ankle monitors: “We’re following our orders.” Direct quote Hm
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Adam @abrokenbattery.bsky.social · 29/07/2026
Councillor Bill Armer, whose late wife had #MECFS, said patients were given a label, but “nothing at all to follow up”. After hearing evidence at a Kirklees Council meeting, he said “I don’t think we’ve made much progress in the last 15–16 years.” He was “disappointed” and “concerned”.
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mossworm.bsky.social @mossworm.bsky.social · 02/08/2026
"An ecologist must either harden his shell and make believe that the consequences of science are none of his business, or he must be the doctor who sees the marks of death in a community that believes itself well and does not want to be told otherwise." don't forget anguish. you can also anguish
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Rebecca Nagle @rebeccanagle.bsky.social · 01/08/2026
The Arctic is warming four times faster than anywhere else. Reindeer are starving. Sámi culture is at risk. For decades, Indigenous nations have demanded a real seat at the UN, not NGO status. Their land, culture, and climate are at stake. ictnews.org/news/as-clim...
ictnews.org
As climate change threatens their lands, Indigenous nations demand more power at the UN - ICT
From the Arctic to the Pacific, Indigenous advocates say their voices are too often ignored.
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Matthew Guariglia @mguariglia.bsky.social · 01/08/2026
I worry that most cynical among us, hopped up on 30 years of law and order rhetoric, will say "this is the system working: he didn't do anything wrong and now he's free." As if the terror and wide-scale publicity of an arrest and federal prosecution is not a horrible punishment in and of itself.
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