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Ann Forbes

@aeforbes.bsky.social
202 followers 175 following 277 posts

noticing–wondering–learning–creating–critiquing–revising

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Ann Forbes @aeforbes.bsky.social · 26/09/2026
"…you're in the middle of a conversation, and you have to say, I'm so sorry. I just can't think anymore. I can't focus on what you're saying. And that's mortifying because you just end the conversation." -- Dianna Cowern
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Matt Lazell-Fairman @mfairma.bsky.social · 21/09/2026
Now that I’m housebound, I’ve been researching home care. Both local hospitals offer it. One is perfect, but refuses pts under 50. The other requires a referral and 1.5 hr in-person health assessment every time I need care, which I can‘t do. Travesty that you can be too sick to get medical care.
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Ann Forbes @aeforbes.bsky.social · 10/09/2026
“It’s not really getting to the core root of the disease, which is why eventually the disease process itself overwhelms the medication that we’re using as an intervention, and then the symptoms start to recur,” Ruhoy says.
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 01/09/2026
Three cheers for the incredible @julialmv.bsky.social 👏🏻🥳 And to the wonderful UCSF team featured as well! @michaelpelusomd.bsky.social Gratitude to these Long Covid researchers & to @smithsonianmag.bsky.social for covering them 🙏
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Ann Forbes @aeforbes.bsky.social · 23/08/2026
You are coping with unimaginable loss. I feel your deep grief. Thank you for sharing your painful reality. It must have taken so much effort to write this piece. You are witnessing to the world. I hope that your moving testimony will be widely shared! ❤️ The world needs to know…
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C.H. Romatowski @chromatowski.bsky.social · 10/08/2026
Important thread for understanding ME/CFS: what is the difference between PEM (post-exertional malaise) and PESE (post-executional symptom exacerbation)?
Four tweets from Todd Davenport

PEM ‡ PESE
That is all. Carry on. ☺️

I took my dogs out for a walk today. My arthritic hip is really acting up now. That's PESE. It came on right after activity it will improve again with rest (until tomorrow, when the dogs want to go out again 😅).
No delay, no prolonged recovery, and no unusual symptoms. Not PEM.

The point is that a whole host of health conditions are characterized by PESE. It isn't specific for ME and ME subtypes of other diagnosable health conditions. Enter PEM-the abnormal recovery response apparently driven by multi-system bioenergetic impairment. It's its own thing.

Confusing PESE and PEM remains an obstacle to recognizing ME, especially against the backdrop of other health conditions that have fatigue as an important component. This remains a challenge to making clinical decisions minimizing harms and creating coherent cohorts for studies.
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C.H. Romatowski @chromatowski.bsky.social · 03/08/2026
The way children have been abandoned to Long Covid—a potentially lifelong illness with no FDA-approved treatment at present—is morally indefensible.
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Ann Forbes @aeforbes.bsky.social · 14/07/2026
Evidence of selective cholinergic denervation within the gastric mucosa Gastric nerve density correlated with HRV parameters Gut: fewer vagus nerve fibers → less control of inflammation → impaired immune regulation More research needed
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Ann Forbes @aeforbes.bsky.social · 13/07/2026
@gingerbillie.bsky.social Are you familiar with the Pridgen Protocol? David Putrino talks about it @ 3:59:11 www.youtube.com/watch?v=dGbb...
youtube.com
PolyBio Fall 2025 Symposium
YouTube video by PolyBio Research Foundation
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Elizabeth Jacobs, PhD @elizabethjacobs.bsky.social · 06/07/2026
Hey y’all, we have one week left to submit comments about The Regime implementing political review of grants, which would harm us all. For more information about submitting a comment or writing to your elected officials, Defend Public Health has a step by step guide for you right here.
defendpublichealth.org
Critical action needed: Stop OMB's political review of federal grants | Defend Public Health
A proposed rule from the Office of Management and Budget (OMB) seeks to take expert review of federal grants out of the hands of experts and put it into the hands of political appointees. This rule co...
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Ann Forbes @aeforbes.bsky.social · 03/07/2026
@vashetc.blacksky.app After reading about your background, I thought you may be interested in this article, by @celinegounder.com , if you have not already seen it, zeteo.com/p/trump-medi...
zeteo.com
Trump Wants YOUR Medical Data for His Drug War
A proposed surveillance system is supposed to target fentanyl, but there are fears it could be used to monitor abortion, pregnancy, gender transition, or any behavior the government wants to go after.
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Ann Telnaes @anntelnaes.bsky.social · 03/07/2026
anntelnaes.substack.com/p/democracy-...
anntelnaes.substack.com
Democracy Under Siege- free screening
Support our democracy and support independent films
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Ann Forbes @aeforbes.bsky.social · 01/07/2026
“His daughter cried when he told her about the agents and she said she didn't want him to be killed." 🥲 ❤️ Before publicly sharing their story, the family discussed the "cost of discipleship". www.npr.org/2026/07/01/n...
npr.org
He sent a harsh email to ICE's top official. 5 months later, federal agents tracked him down
Federal agents went to a Rochester man's home to warn him that an email he sent five months ago could be an illegal threat. He was on vacation but another agent found his hotel hundreds of miles away.
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Ann Forbes @aeforbes.bsky.social · 30/06/2026
@baldypidge.bsky.social My son sent this to me. Thought you'd enjoy it. thehtml.review/05/meanders/
thehtml.review
Meanders
I am drawing a map from the sea to the sky.
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Ann Forbes @aeforbes.bsky.social · 26/06/2026
Hi @baldypidge.bsky.social After reading this, I went to the author’s website. Rosie might be interested. The link is at the end of the article. thesicktimes.org/2026/06/26/i...
thesicktimes.org
I worked in homeless services for years. It didn’t help me find accessible housing when I got Long COVID. - The Sick Times
The 1988 amendments to the Fair Housing Act were supposed to address inaccessibility in housing by requiring buildings constructed after 1991 to meet certain accessibility requirements. In practice, h...
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Prof Christina Pagel @chrischirp.bsky.social · 22/06/2026
I want to shout out www.outdoormobility.org - an amazing oganisation making the beautiful outdoors accessible to those who can't walk far with their bookable Trampers :-) Also to @nationaltrust.org.uk who offer similar at many of their sites! My mother has had the *best* weekend in the Lakes!
photo of my mother on her tramper in beautiful Langdale valley
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Jon Douglas @atranscendedman.bsky.social · 20/06/2026
McMaster University researchers found statins can trigger muscle damage through a cholesterol independent pathway. Lower protein prenylation activated NLRP3 and reduced YAP signaling, driving muscle atrophy and weaker protein synthesis. www.science.org/doi/epdf/10....
science.org
Statins promote muscle metabolic danger and NLRP3-mediated myopathy via lower protein-prenylation and YAP
Reader environment loaded
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Long Covid Kids @longcovidkids.bsky.social · 14/06/2026
Are you working in education and trying to improve attendance and attainment? This new resource is for you. #CleanAir #Attendance #Education #Resource www.twinkl.co.uk/resource/lea...
twinkl.co.uk
Leading With Becky Dawson and Kat Oakes on Clean Air in Classrooms
Practical strategies for clean air in classrooms. Created by experts for a supportive learning environment.
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#MEAction Network @meactnet.bsky.social · 06/06/2026
Jaime Seltzer It's ME(Jaime) at #MillionsMissing: "[Imposing Medicaid] work requirements in order to receive assistance is going to make so many people sicker. It's going to make so many people lose their lives. We need to fight against it with everything that we have." youtu.be/VGmix8XT14s
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Ann Forbes @aeforbes.bsky.social · 05/06/2026
“Critical thinking for open-ended problems is enabled by extensive stores of knowledge.”
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Joe Morelle @morelle.house.gov · 27/05/2026
My statement after visiting the Buffalo Federal Detention Facility in Batavia today:
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Ann Forbes @aeforbes.bsky.social · 27/05/2026
"...we speculate that the decreased Norepinephrine Pathway activity observed in PI-ME/CFS and in PASC with post-exertional malaise reflects decreased ATP availability for vesicular uptake and retention." So far, just a correlation. Looking forward to more research.
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Ann Forbes @aeforbes.bsky.social · 23/05/2026
"Long COVID confirmed a difficult reality: modern healthcare systems are optimized for diseases that can be rapidly diagnosed, categorized, and treated — not illnesses that require uncertainty tolerance, longitudinal care, and deep listening."
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Ann Forbes @aeforbes.bsky.social · 20/05/2026
Thanks for Martin Rücker's article! It reminded me of Gez’s interview with Klaus Wirth which includes excellent graphics. I have viewed it multiple times to learn more about sodium overload & exercise induced damage. Each time, more of the science makes sense. www.youtube.com/watch?v=9gwM...
youtube.com
The Latest Research on Mitochondrial Dysfunction in Long Covid & ME/CFS | With Prof. Klaus Wirth
YouTube video by Gez Medinger
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Ann Forbes @aeforbes.bsky.social · 08/05/2026
Wedge pillow in use @gingerbillie.bsky.social
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Ann Forbes @aeforbes.bsky.social · 04/05/2026
"The goal is not to do more, or less, but to do what matters most for each patient. Evidence like this challenges us to rethink default practices and move toward care that is truly patient‑centered and value‑based."
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ME/CFS Science @mecfsscience.org · 03/05/2026
"You mourn yourself while stile alive. And others move on as if you have already died." Beautiful film on severe ME/CFS by Anil Van Der Zee. It's part of an art exhibition by ME/CFS patients in Amsterdam. youtube.com/w...
youtube.com
Buried Alive with M.E. (with subtitles)
For ME Awareness Month I made a severe ME body‑bag “dance” film about death within the ME community. I also joined the online exhibition Myalgic Encephalomyelitis Kills by A Quiet Storm, which goes live on May 12th, ME Awareness Day. It strengthened my drive to make this film about this important s
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Ann Forbes @aeforbes.bsky.social · 29/04/2026
A while ago you @gingerbillie.bsky.social were asking about pillows. I have found that having my knees higher than my hips helps calm my dysautonomia. I use a zero gravity chair, or this wedge pillow from Helix.
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Ann Forbes @aeforbes.bsky.social · 24/04/2026
PEM is a failure of metabolic recovery. The defining pathology of ME/CFS is not fatigue, but a physiological inability to recover from exertion…an aerobic energy system that breaks down following the first CPET. likeannopeningbandforthesun.substack.com/p/why-a-pati...
likeannopeningbandforthesun.substack.com
Why a Patient Made the Two-Day CPET
How a patient used the scientific process and tools of her discipline to understand her own reality, starting to answer questions no one else had thought to ask.
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Ann Forbes @aeforbes.bsky.social · 19/04/2026
A structured interview of patients with autonomic disorders was conducted utilizing the Dysphagia Handicap Index (DHI). Swallowing function is controlled by the vagus nerve, which is responsible for swallowing coordination. www.mdpi.com/2035-8377/18...
mdpi.com
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Ann Forbes @aeforbes.bsky.social · 18/04/2026
"Recovery-focused studies show ME/CFS patients report return-to-baseline times averaging nearly two weeks after a standardized physical exertion compared with around 48 hours in healthy, deconditioned controls." likeannopeningbandforthesun.substack.com/p/in-pursuit...
likeannopeningbandforthesun.substack.com
In Pursuit of Understanding the Crash
What Post-Exertional Physiology Tells Us About ME/CFS
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Ann Forbes @aeforbes.bsky.social · 18/04/2026
It is an atypically warm mid-April day. The lead-colored sky forms a canopy overhead. Magnolia and weeping cherry blossoms are transformed to muted mauve by the sunlight-obscuring stratus layers. A warm, humid breeze swirls around me.
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Long Covid Kids @longcovidkids.bsky.social · 18/04/2026
“We call on all those working with young people with #LongCovid to facilitate young people’s alternative networks of care, and take inspiration from young people’s forms of everyday activism to proliferate the tangible, everyday, forms of support needed” www.longcovidkids.org/post/covid-m... #Care
longcovidkids.org
3 New Resources, Created by Young People
The Covid Made Long project is a research partnership led by the London School of Hygiene & Tropical Medicine (LSHTM), in collaboration with Long Covid Kids, Imperial College, Long Covid Support, and ...
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Ann Forbes @aeforbes.bsky.social · 16/04/2026
"You can’t bully your body into producing energy it doesn’t have. You can’t intimidate PEM into not happening."
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Long Covid Kids @longcovidkids.bsky.social · 15/04/2026
Rosie met with the panel, talked about her work,connected with patients, parents, carers. Her story gives people hope, & that matters deeply. We hope to bring the LCK art exhibition into a medical school for #MEAwareness Week. More on that soon. 🎨 www.instagram.com/p/DWbgQ6zDPr0/
instagram.com
Rosie Pidgeon on Instagram: "Thank you to @hope4mefibro.ni for letting me bring along some of my artwork yesterday to 'Shaping the Future for M.E. & Long Covid: Collaboration for Change' and represent...
33 likes, 2 comments - rosiepidgeonart on March 28, 2026: "Thank you to @hope4mefibro.ni for letting me bring along some of my artwork yesterday to 'Shaping the Future for M.E. & Long Covid: Collabora...
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The Vertlartnic @thev.bsky.social · 15/04/2026
Authorities Frustrated By Awareness Of Long Covid Outside Of Designated Long Covid Awareness Day
An authority
Headline:
Authorities Frustrated By Awareness Of Long Covid Outside Of Designated Long Covid Awareness Day 
Story by Sam Likewise and Clark Cubicle

Photo from Unsplash
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Ann Forbes @aeforbes.bsky.social · 12/04/2026
“…astronauts are similar to persons with disabilities in that they have specific challenges in the ways they navigate space. [I]f you consciously design for the least-abled people, you make a better design for everybody” (p 29) @exceedhergrasp1.bsky.social @thesicktimes.org issuu.com/risd/docs/ri...
issuu.com
RISD Alumni Magazine Winter 2024
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loscharlos @loscharlos.bsky.social · 10/04/2026
Loretta Ross said: “When people think the same idea and move in the same direction, that’s a cult. When people think many different ideas and move in one direction, that’s a movement.” — and that we spend too much time arguing with people whom we agree with on 75-90% of issues. /7
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Ann Forbes @aeforbes.bsky.social · 09/04/2026
Have you @baldypidge.bsky.social seen this article? I was quoted in it. thesicktimes.org/2026/03/30/c...
thesicktimes.org
California clinicians gather for Long COVID forum. Recent guides offer direction. - The Sick Times
Clinicians and people with Long COVID gathered in Santa Barbara, California, in late March for a forum on advancing clinical care in infection-associated chronic conditions.
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Ann Forbes @aeforbes.bsky.social · 30/03/2026
The crime of our times is that you @darthfoo.bsky.social were forced to work until you collapsed. Without showing up for work, you would forfeit both health insurance and the means to afford necessities. You took a gamble, not by choice. centerleftstack.substack.com/p/the-debt-c...
centerleftstack.substack.com
The Debt Came Due
Notes From a Crash
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Tom Kindlon @tomkindlon.bsky.social · 17/03/2026
This image from ME/CFS South Australia refers to this useful webpage on Post-Exertional Malaise (PEM) on the ME/CFS Australia site: mecfs.org.au/resources/po... (the URL redirects here) #MEcfs #PEM #PostExertionalMalaise #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Symptom Spotlight
Post-exertional malaise: not just tired
https://mecfssa.org.au/resources/post-exertional-malaise-pem
• Key Symptom of ME/CFS: Post-Exertional Malaise
• Post-exertional malaise (PEM) or post-exertional neuroimmune exhaustion (PENE)
is a pathological loss of energy and worsening of symptoms following minimal
physical, mental or emotional effort, or other triggers. The onset of PEM may be
immediate or delayed by several hours or days. Recovery is prolonged and may
take days, weeks or months.
• When people with ME/CFS push themselves to use more than their available
energy reserves, the loss in
functional capacity is inevitable
and cannot be reversed by a
long rest or a good night's
sleep.
People often struggle to describe
this loss of energy, weakness and
exacerbation of symptoms. They
may use words like crash,
payback, debilitating exhaustion.

Drawing of someone looking exhausted and distressed holding tightly to their blanket
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Ann Forbes @aeforbes.bsky.social · 15/03/2026
The novelty of this synthetic review lies in bringing together two fields that have until now pursued entirely separate paths, namely the fields of fibrinaloid microclot measurements and nailfold (video) capillaroscopy. www.sciepublish.com/article/pii/... Kell and Pretorius, 2025
sciepublish.com
On the Utility of Nailfold Capillaroscopy in Detecting the Effects of Fibrinaloid Microclots in Diseases Involving Blood Stasis
A variety of chronic, inflammatory vascular and autoimmune diseases are accompanied by fibrinaloid microclots. Such diseases reflect endothelial dysfunction and may be detected using a ‘structural’ as...
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Ann Forbes @aeforbes.bsky.social · 03/03/2026
"Love of country is not blind allegiance to power. It is fidelity to the Constitution and to one another. If federal authority can be deployed to terrorize one community today, it can be deployed against another tomorrow. Accountability is not revenge. It is a crucial step to safeguarding democracy.
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Ann Forbes @aeforbes.bsky.social · 26/02/2026
Essential lesson: "It will be because we learn to disagree and debate without dehumanizing each other." @ylepidemiologist.bsky.social yourlocalepidemiologist.substack.com/p/the-test-o...
yourlocalepidemiologist.substack.com
The test of open dialogue
In the face of Jay Bhattacharya as the new CDC Director
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Ann Forbes @aeforbes.bsky.social · 19/02/2026
"Love is found in every act of courage—large and small—taken to preserve the country we once knew. You will find it in homes and schools and churches and art. It is there; it has not been squashed.”
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Ann Forbes @aeforbes.bsky.social · 17/02/2026
substack.com/@vspehar/not...
substack.com
V Spehar (@vspehar)
On President’s Day, the First Amendment Troop staged “ResistDance” — a tribute and act of artistic dissent — at the Lincoln Memorial, followed by a guerrilla performance at the John F. Kennedy Center ...
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Ann Forbes @aeforbes.bsky.social · 04/02/2026
Sent to both of my senators today
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Alfie Kohn @alfiekohn.bsky.social · 03/02/2026
"I arise in the morning torn between a desire to improve (or save) the world and a desire to enjoy (or savor) the world. This makes it hard to plan the day." -E.B. White
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Ann Forbes @aeforbes.bsky.social · 03/02/2026
Mayor Jacob Frey: “And it’s on the whole country again to love this nation more than you love your respective ideology.” www.nytimes.com/2026/01/31/m...
nytimes.com
‘A Terrifying Line Is Being Crossed’: Mayor Jacob Frey on the Turmoil in Minneapolis
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Ann Forbes @aeforbes.bsky.social · 01/02/2026
Billy @bhanlon15.bsky.social I saw this & it raised questions for me. bsky.app/profile/debb...
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