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Call Me Cassandra

@stitchingtwitcher.bsky.social
2.4K followers 2.9K following 2.8K posts

Spotter of patterns, sometimes wishing I could unsee ME/CFS, Chronic Illness, AuDHD, Still Coviding

PostsRepliesMedia
Call Me Cassandra @stitchingtwitcher.bsky.social · 1h
Oh wow, I had forgotten that. He was hired for his expertise in exactly such things.
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Call Me Cassandra @stitchingtwitcher.bsky.social · 5h
Yeah, just ignore patients and patient advocates, they clearly have an agenda (Why yes, yes we do have an agenda: to prevent harm from inappropriate treatments and to push for proper care)
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Call Me Cassandra @stitchingtwitcher.bsky.social · 5h
That boils my blood
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Call Me Cassandra @stitchingtwitcher.bsky.social · 12h
That’s the *real* reason they won’t do it.
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Nancy Levine Stearns @nancylevinestearns.bsky.social · 15h
🚨NEW by me: New ICE facility for unaccompanied migrant kids is about to open in Louisiana. While ICE is sanitizing optics, calling it the "Alexandria Family Staging Center," lawmakers and child advocates are raising the roof warning of child trafficking risks. www.thequeenzone.com/new-ice-faci...
thequeenzone.com
New ICE Facility for Migrant Children Raises Alarm Over Trafficking Risks
A new ICE (U.S. Immigration and Customs Enforcement) facility for unaccompanied children, families, and single women is set to...
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Call Me Cassandra @stitchingtwitcher.bsky.social · 12h
Thank you for your service. Remember, they only mock those they’re afraid of.
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Angie Nixon @angieforfl.bsky.social · 17h
Folks have insulted:  My Southern drawl.  My loc’d hair.  My clothes.  My shoes.  My intelligence.  I’ve been called a ghetto Black b!t€h. Now @JDVance says I don’t belong and should leave the very country my ancestors helped build. This is a lot y’all. It is. #AngieForFlorida
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Raider @iwillnotbesilenced.bsky.social · 19h
ICE just kidnapped a woman at LAX airport Saturday Oct 3, 12:50AM. A community member was able to record when several ICE goons who refused to identify themselves grabbed the woman, put her into a van and then drove off.
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valebodi.bsky.social @valebodi.bsky.social · 16h
What if the muscles of people with #PEM can look normal on routine testing while the machinery that actually produces force is being transcriptionally rewritten? At the 2026 World Muscle Society congress, Guillaume Severa, François-Jérôme Authier and colleagues from the Paris Est Créteil/
x.com
Lawrence (@Deep_Chora) on X
What if the muscles of people with PEM can look normal on routine testing while the machinery that actually produces force is being transcriptionally rewritten? At the 2026 World Muscle Society congr...
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valebodi.bsky.social @valebodi.bsky.social · 16h
But the phenotype is unusually clear: these are rigorously defined #ME/CFS post COVID-19 patients whose standard neuromuscular tests largely say "normal," while molecular profiling says the contractile system itself may not be. 3.14P Evidence for transcriptomic changes impacting muscle contraction
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Dhruv Mehrotra @dmehro.bsky.social · 02/10/2026
NEW: DHS agents tracked people observing ICE arrests, photographed them, ran their plates, pulled personal information, and added them to a Palantir database, according to newly unsealed court filings. w/ @regret.bsky.social
wired.com
ICE Has Been Dumping Protester Photos Into a Palantir Database
DHS agents not only tracked and intimidated people observing ICE activity in Maine, but stored information about them in a Palantir-built database, newly unsealed court filings say.
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Elke Hausmann @drelke.bsky.social · 02/10/2026
#LongCovid #ME www.theguardian.com/society/2026...
The GP who responds here to George Montbiot's article admirably seems to know about PEM, but at the same time puts doubt on whether physical rehabilitation might not be beneficial after all for people with ME.
First, we need all GPs to not just know about PEM, but understand what it means - in the presence of PEM, physical rehabilitation is not possible, beyond trying to remain as active as can be within one's limited energy
envelope.
Only once we can trust all GPs to understand that, can we trust that those GPs are giving good and safe advice to people with ME.
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Raider @iwillnotbesilenced.bsky.social · 02/10/2026
ICE arrested the mom of a 9-year-old at a school bus stop in Austin, leaving him alone and crying. The video has profanity and is heartbreaking to watch, but it shows the fear/pain of what happened. This is evil. This is wrong. And it has to stop.
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sarah boothby @swastrosarah.bsky.social · 02/10/2026
The first question would have to be, who financed the Science Media Group then, and how were those funds raised? @davetuller1.bsky.social @alemmatthees.bsky.social
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Rep. Robert Garcia @robertgarcia.house.gov · 02/10/2026
This corruption must be investigated.
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𝕯𝖆𝖓🍂🎃🕸️ @arepublic86.bsky.social · 02/10/2026
This right here. This is how you respond to their bullshit.
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Matthew Gertz @mattgertz.bsky.social · 02/10/2026
They're holding up a major escalation in Iran and a crackdown on abortion until after the midterms to limit political damage. To the extent that the last two years have been a right-wing smash-and-grab operation, the next two will be worse.
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George Monbiot @georgemonbiot.bsky.social · 02/10/2026
@davetuller1.bsky.social, a great champion of patients, interviewed me about the massive, ongoing scandal of the neglect, abuse and mistreatment of people with ME/CFS www.youtube.com/watch?v=Maae...
youtube.com
Interview with George Monbiot about Guardian column on ME/CFS
YouTube video by David M Tuller
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Alem Matthees @alemmatthees.bsky.social · 02/10/2026
(1/3) @georgemonbiot.bsky.social is far more deserving of winning a prize for his journalism on the #MECFS scandal than whatever award was given to another journalist for literally just reporting a curated narrative handed to him by the Science Media Centre (UK) as part of their organised campaign.
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Tom Kindlon @tomkindlon.bsky.social · 02/10/2026
Latest update from the CureME team, can be read here and covers a range of topics on current projects, recent publications and sample usage eepurl.com/QShnc4nywr #MyalgicEncephalomyelitisg #ChronicFatigueSyndrome #MEcfs #CFS #PwME
eepurl.com
Latest CureME team updates
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Adam @abrokenbattery.bsky.social · 02/10/2026
"This is the opposite of how science ought to work." George Monbiot on those pushing "false and dangerous" cures for #MECFS, "entrenched" in their beliefs and doubling down rather than admit the "great harm" to the lives of thousands of people.
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Tom Kindlon @tomkindlon.bsky.social · 01/10/2026
This is up to 223,000 views now #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #PwME #CFS
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Patient-Led Research Collaborative @patientled.bsky.social · 01/10/2026
A new publication is out from PLRC member Dr. Alison Cohen of UCSF! "We encourage state legislatures to pass legislation that requires all schools to make changes to their infrastructure to support cleaner air to protect students & teachers." #LongCovid
journals.sagepub.com
Sage Journals: Discover world-class research
Subscription and open access journals from Sage, the world's leading independent academic publisher.
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Tom Kindlon @tomkindlon.bsky.social · 01/10/2026
(Santa Rosa, California, USA) "Interested in Helping to Develop a Non-Invasive Way to Measure Blood Flow to the Head?" #MEcfs #PwME #CFS #MyE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @sunsopeningband.bsky.social

Interested in
Helping to Develop a Non-Invasive Way to Measure Blood Flow to the Head?
If you are a woman between the ages of 18-65 and you have myalgic encephalomyelitis (ME) or you are healthy, you may be eligible to participate in a study.
A Non-Invasive Way to Measure Blood Flow to the Head
If you are eligible and agree to participate in the study, you will answer three questionnaires involving more about you, your signs and symptoms, and how well you can think and pay attention.
This is a two-day test involving two different research sessions. During each session, you will do a maximal cardiopulmonary exercise test involving a stationary cycle. Before each test, you will complete a NASA Lean Test. Throughout the study, you will wear an earpiece that measures the blood going to your head.
An honorarium is available to participants.
For more information, and to participate, please contact info@workwellfoundation.org or tdavenport@pacific.edu.
Location
Workwell Foundation in Santa Rosa, California
Are you eligible?
A woman between the ages of 18-65 years Have ME
Cleared by a medical provider to complete cardiopulmonary exercise testing
If you aren't sure, a screening process is provided as part of the study
If you're unsure if you meet the requirements, call or email the study's principal investigator:
Todd E. Davenport, PT, DPT, PhD, MPH, OCS Professor
Department of Physical Therapy University of the Pacific
(209) 946-3159 tdavenport@pacific.edu
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sarah boothby @swastrosarah.bsky.social · 01/10/2026
'Monbiot then wrote about Professor Sharpe’s accusation-in the process learning about the entire debate, including the history of the fraudulent PACE trial' NB PACE Trial 'evidence' provided the basis NICE & NHS used to withdraw all drugs known to manage dysautonomia; symptomatic in #ME #LongCovidME
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Christopher Webb @cwebbonline.com · 01/10/2026
This is the most heartbreaking stories I’ve heard in a long time. ICE detained 2-year-old Orlin Hernandez Reyes’ mother. She begged to be reunited with him before deportation. ICE refused. What happened next is horrific. No matter how you feel about immigration, normal people don’t like cruelty.
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Adam @abrokenbattery.bsky.social · 01/10/2026
“I was just horrified… The most heartbreaking stories… Treatment is absolutely appalling for patients.” @georgemonbiot.bsky.social speaking to @davetuller1.bsky.social about the hundreds of messages he received from people around the world with #MECFS about their experiences of treatment.
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jpgriffithmn.bsky.social @jpgriffithmn.bsky.social · 01/10/2026
Agree. Bryan Stevenson said it best. It’s not about whether someone deserves to die. It’s about whether we as a society deserve to kill.
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Call Me Cassandra @stitchingtwitcher.bsky.social · 01/10/2026
I’m okay with confiscating. We could take 99% of all they own and they would still be rich beyond measure.
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George Monbiot @georgemonbiot.bsky.social · 01/10/2026
You can see the genocide from space. Yet still it is widely denied.
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Eleanor Fielding @meownersclub.bsky.social · 01/10/2026
There should be a condition call Fabricated Illness By Doctor - Fib Doc for short
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Robert Reich @rbreich.bsky.social · 01/10/2026
Wilber Rafael Garces Perez was shot by ICE 10 days ago. The bullet is still lodged in his back. He’s been forced to sleep on the floor and hasn’t been given medication, according to his attorney. Now DHS is claiming he assaulted an agent. Can we trust anything DHS says given its track record?
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Ron Filipkowski @ronfilipkowski.bsky.social · 01/10/2026
An ambitious narcissist megalomaniacal right-wing Christian nationalist fanatic with a drinking problem and a history of erratic and reckless behavior who hates rules of engagement in charge of the most powerful military in the history of the world. What could go wrong? bsky.app/profile/atru...
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Robert Reich @rbreich.bsky.social · 30/09/2026
When historians reflect on this regime, cruelty will be the word most often used to define it. www.commondreams.org/news/trump-dep…
commondreams.org
'Monstrous' US Deportation Hearings for Children Who 'Have No One' Shock Consciences | Common Dreams
Children as young as 3 facing deportation orders without legal representation in immigration court hearings. How can we
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Raider @iwillnotbesilenced.bsky.social · 30/09/2026
Ex-WV police chief violently attacked a woman over an expired registration. Though innocent, she spent five days in jail before the charge was dismissed. He resigned and was decertified.
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Call Me Cassandra @stitchingtwitcher.bsky.social · 30/09/2026
It’s a lose-lose situation. If you are able to mask well, they don’t believe you’re as sick as you say, and if you show up looking like you feel, they’ll refer you for CBT or send you to psychiatry. They simply can’t SEE us.
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Gil Durán @gilduran.com · 28/09/2026
What a shock…I have been barred from Peter Thiel’s Nashville Antichrist lectures despite buying a ticket. Was it something I said? As the world’s foremost expert on Thiel’s Antichrist obsession, I take great umbrage. This aggression will be answered.
The Nashville Antichrist
Lectures
Marked as Not Going
The host of the event marked you as not going. We hope you can join next time.
Your ticket has been refunded, and you have been removed from the guest list. Thank you.
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Call Me Cassandra @stitchingtwitcher.bsky.social · 26/09/2026
I’m with you on this. Costco is the Democratic Party of corporations: it’s *less bad* but not even remotely good. I shop there and am glad to have the option to do so, but let’s not kid ourselves. Costco is elitist and fosters a culture of waste and overconsumption.
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Call Me Cassandra @stitchingtwitcher.bsky.social · 26/09/2026
I would add a requirement of the simulation to be the self-gaslighting and demoralization that occurs from repeatedly attempting to get help, only to be “reassured” that nothing is wrong. And the unnecessary physical deterioration resulting from “pushing through” because we internalize the message.
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Alem Matthees @alemmatthees.bsky.social · 24/09/2026
(2/3) We still do not really know how safe CBT/GET were in the #PACEtrial for #MECFS. All the data on the severity and duration of "non-serious" adverse events was aggregated together? Furthermore, there was no data published on "non-serious" adverse reactions?
pmc.ncbi.nlm.nih.gov
Adverse events and deterioration reported by participants in the PACE trial of therapies for chronic fatigue syndrome
Adverse events (AEs) are health related events, reported by participants in clinical trials. We describe AEs in the PACE trial of treatments for chronic fatigue syndrome (CFS) and baseline characteris...
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Alem Matthees @alemmatthees.bsky.social · 25/09/2026
The most insane thing about this #MECFS scandal, beyond all the suffering and neglect, is that it costs hundreds of times more in economic losses every year than it would to fund the research that could eventually decrease this burden. The degree of short-sightedness involved is astounding.
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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kristinekenyon.bsky.social @kristinekenyon.bsky.social · 25/09/2026
For those asking what can we do besides voting, if Trump declares martial law (or “marshall law” like some Republicans spell it), we grind everything to a halt. No violence, just stop the economy in its tracks. bsky.app/profile/kris...
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Call Me Cassandra @stitchingtwitcher.bsky.social · 26/09/2026
This is really nice. Thank you for sharing 🫶
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Tom Kindlon @tomkindlon.bsky.social · 25/09/2026
8-page document "ME, CFS and Long Covid Health and Care Passport" suffolkfed.org.uk/wp-content/u... Could be used by people in lots of countries #MEcfs #LongCovid #PwME #CFS
ME, CFS AND LONG COVID  
HEALTH AND CARE PASSPORT 
 
SECTION 1: CRITICAL INFORMATION AT A GLANCE 
 
Personal Information 
Name:  I Prefer to be Called: 
Date of Birth:  NHS Number: 
Address:  Hospital Number: 
 
Emergency Contact 
Name:  Contact Number: 
Relationship:   
 
MY CURRENT STATUS 
Selection  Status  Meaning 
 
☐ 
 
GREEN: I am at my 
BASELINE 
 
I am managing within my energy 
limits but remain at risk of PEM. 
 
☐ 
 
AMBER: I am STRUGGLING / 
AT RISK OF A CRASH 
 
My symptoms are worsening. 
Please minimise ALL exertion 
immediately to prevent a crash. 
 
☐ 
 
RED: I am in a CRASH / 
SEVERE RELAPSE 
 
Assume I have zero available energy. All 
interaction is potentially harmful.  
Please follow my emergency care 
plan as set out in this section, 
 
MY CURRENT SEVERITY 
Selection  Severity  Meaning 
 
☐ 
 
Mild 
I may need support for some tasks and 
may have difficulties with mobility. 
 
 
☐ 
   
Moderate 
I have reduced mobility, and I am 
restricted in all activities of daily living. 
 
 
☐ 
 
Severe 
I am confined to the house, need help 
with all activities, sensitive to light and 
sound. 
 
☐ 
 
Very Severe 
I am confined to bed, hypersensitive, 
dependent on care, need help with  
personal hygiene, eating.
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🇨🇦Joe Vipond🇨🇦 @jvipondmd.bsky.social · 24/09/2026
"Narrow definitions of credible evidence, which prioritised clinical and epidemiological evidence over findings from aerosol science, delayed incorporation of knowledge on airborne transmission despite emerging interdisciplinary evidence" www.thelancet.com/journals/lan...
thelancet.com
The NUS–Lancet PRIME Commission: transforming pandemic readiness for equity
The National University of Singapore (NUS)–Lancet Pandemic Readiness through Institutions, Mobilising Communities, and Equity (PRIME) Commission redefines pandemic readiness and offers a practical blu...
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Bryn Boice @brynboice.bsky.social · 25/09/2026
I want to beg teachers and professors to bring back reading plays and stories aloud in class. It’s real, real-time, and different people *hear* different things in the text and are eager to discuss their takes. Empathy is imbedded in this work.
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wsmv.com @wsmv.com · 25/09/2026
Potentially toxic algae prompts state testing at Centennial Park in Nashville
wsmv.com
Potentially toxic algae prompts state testing at Centennial Park in Nashville
Metro Parks put up a warning sign Thursday alerting people that the green layer could be toxic algae.
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Bobby Ray Stacy @bobby-ray-stacy.bsky.social · 25/09/2026
. These data centers are bad news and we don't need them. I have written 3 major articles on these. The whole thing is shady as sh#t and has been rolling out in the most corrupt, oppressive and tyrannical fashion possible. And God only knows what we've got coming when all these are up online. .
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Andrew Lawrence @ndrew.bsky.social · 25/09/2026
oh my god?
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