iiinova — where your digital self keeps evolving

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 · 19/09/2026

It’s hard to not feel overwhelmed and become mired in catastrophizing. I am learning that sometimes I need to compartmentalize. This “time-out” strategy has become a necessary tool in my pacing repertoire. It’s not giving up. It’s protecting myself to be ready on another day. And, it is hard!

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Ann Forbes @aeforbes.bsky.social · 19/09/2026

Governmental promises that I took for granted are disappearing daily. Our democracy is more fragile than I thought was possible. So much is broken right now, including commitments to Long COVID & ME research by NIH.

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Ann Forbes @aeforbes.bsky.social · 19/09/2026

Billy, I understand your melancholy.

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Ann Forbes @aeforbes.bsky.social · 13/09/2026

This surprise late lily blossom in my garden is to celebrate Lily’s matriculation!

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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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Ann Forbes @aeforbes.bsky.social · 07/09/2026

When I read this a few days ago I felt too sad to respond right away. It sucks!!! I feel grief about your losses. I wish there were treatments right now that could give you back your former life! ❤️

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Ann Forbes @aeforbes.bsky.social · 02/09/2026

Colin, you have so much to be grateful for. Your family is so supportive of each other – through the difficult times, and the celebrations! I wish Lilie the best in her new endeavors!

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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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Ann Forbes @aeforbes.bsky.social · 16/08/2026

The eclipse was eclipsed! The same thing happened here 2 years ago during the total solar eclipse. Those special viewing glasses were unused.

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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 · 30/07/2026

Thank you for sharing -- I can see the textures -- beautiful artistry!

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Ann Forbes @aeforbes.bsky.social · 28/07/2026

I’m part way into 14 days with a Zio monitor. I wonder how HR will compare with my Garmin watch? Zio is a continuous ECG. I will mail it back. Then, AI generated report goes to cardiologist.

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Ann Forbes @aeforbes.bsky.social · 28/07/2026

I wish you the best with your citizen science trial!

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Ann Forbes @aeforbes.bsky.social · 27/07/2026

Emma, thank you for writing, and Billy, thank you for sharing, this important article!

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Ann Forbes @aeforbes.bsky.social · 19/07/2026

I am so grateful for your foresight and your determination to issue warnings. You and others taught me. You all gave me the gift of knowledge to reject "exercise-your-way-out-of-it" medical advice. I'm sure it has made a difference. I am partially housebound, but not bedbound.

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Ann Forbes @aeforbes.bsky.social · 14/07/2026

As I continue to read, learn & observe what others report, I think that the superficial treatment of effects rather than causes can also lead to long-term harm following a short period of symptom improvement. I think the body just reprograms its pathobiology to circumvent the new therapy.

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Ann Forbes @aeforbes.bsky.social · 14/07/2026

Great question/observation Billy!

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Ann Forbes @aeforbes.bsky.social · 14/07/2026

You prompted me to explore conversions -- Heat index here today about 40 C I looked up temps for you -- it looks like 19 C is normal at this time of the year -- so you are roasting too! 🌞

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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 · 14/07/2026

When I viewed your photo yesterday I thought the corn field was water reflecting the sunset. You've also had scorching heat, right? The heat index where I live is forecast to reach 105 today.

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Ann Forbes @aeforbes.bsky.social · 13/07/2026

I hope you get some relief soon

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Ann Forbes @aeforbes.bsky.social · 13/07/2026

Waiting for satisfactory solutions is so ... I feel like the hour & the day determines which adjective works to end that thought!

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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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Ann Forbes @aeforbes.bsky.social · 08/07/2026

I agree. I’m working on my response.

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Ann Forbes @aeforbes.bsky.social · 08/07/2026

“The CDC’s National Wastewater Surveillance System, built during the pandemic, runs on Palantir’s Foundry platform under a $443 million contract. The CDC has said it will have no funding to sustain the program beyond September 30, 2026.” @celinegounder.com zeteo.com/p/trump-medi...

zeteo.com

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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 · 01/07/2026

TIL: “The CDC’s National Wastewater Surveillance System, built during the pandemic, runs on Palantir’s Foundry platform under a $443 million contract. The CDC has said it will have no funding to sustain the program beyond September 30, 2026.” @celinegounder.com 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 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

Tangent (not what you asked) I have this article bookmarked for its insights into language processing. I also see parallels with cognitive processing issues due to ME. kityates.substack.com/p/reading-be...

kityates.substack.com

Reading between the lines

A summary of the third chapter of You Don't Know What You're M ss ng

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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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#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 · 06/06/2026

I am one of the people who heard and heeded the warnings about PEM. I will be forever grateful for the shared stories that allowed me to understand that I needed to make choices that were contrary to the medical advice that I received. Hopefully the wisdom of those who have gone before me will help!

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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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Ann Forbes @aeforbes.bsky.social · 03/06/2026

Thank you for your heartfelt message

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