iiinova — where your digital self keeps evolving

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BioVie Inc @biovie.bsky.social · 26/05/2026

Enrollment is complete in our Phase 2 ADDRESS-LC clinical trial evaluating bezisterim for the treatment of neurological symptoms of Long COVID, with topline data expected in late summer 2026. Learn more: investors.bioviepharma.com/news/news-de...

LONG COVID UPDATE
BioVie Announces Full Enrollment of the ADDRESS-LC Trial of Bezisterim for the Treatment of Neurological Symptoms Associated with Long COVID

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C.H. Romatowski @chromatowski.bsky.social · 10/06/2026

The FDA just extended this deadline until July 11—if you haven’t yet commented, there’s plenty of time left!

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The Sick Times @thesicktimes.org · 18/03/2026

To make exploring currently available treatment options for #Long COVID easier, @patientled.bsky.social and @rthm.bsky.social collaborated to create a treatment guide. bit.ly/3PIr5tY

Graphic highlighting the cover of the PLRC-RTHM Long COVID Treatment Guide, featuring both organizations’ logos and text sharing the guide’s title. Behind the cover, there is a zoomed-in image of a blister pack holding pills. The text reads, “The Sick Times. A new aid in the doctor’s office: Introducing the Long COVID Treatment Guide. By Letícia Soares and Jennifer Curtin.”

Too often, people with Long COVID hear that since clinical research is still underway, not much can be done for them at this point. We at the Patient-Led Research Collaborative and RTHM Clinic reject this narrative: We believe it is a fallacy that hinders access to care that could provide much-needed symptom alleviation today. There is a large variety of treatment options that can help improve the most common symptoms and conditions that occur in Long COVID and help patients regain some quality of life.

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Niko Suvisto @nikosuvisto.com · 25/02/2026

For some reason, I haven’t photographed the door of my room. Maybe it is because I’m always faced the other way around. 1/5 #Photography #MECFS #pwME

A black and white photo of a dark room. The room’s door is partially open and shows a view of a bright hallway. The light from the hallway lits part of the floor.

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Julia Métraux @juliametraux.bsky.social · 10/02/2026

I had the pleasure of talking to @lauramauldin.bsky.social about her new book “In Sickness and In Health,” which delves into spousal caregiving, including in ways our political system is not set up to help caregivers not burn out, at @motherjones.com. www.motherjones.com/politics/202...

motherjones.com

The political world of caregiving

Writer and scholar Laura Mauldin's new book takes on the hidden politics of spousal care.

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ME/CFS Science @mecfsscience.org · 17/12/2025

1) Prof. Scheibenbogen announced that the biopharma company Sanofi is willing to support a drug trial on ME/CFS led by the Charité. Sanofi also expressed an interest in gaining a better understanding of the disease and its mechanisms.

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Paul Fairie @paulisci.bsky.social · 06/11/2025

A List of Things Said to Have Been Ruined by Women 🧵

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Daniel Lewis @daniellewis.bsky.social · 27/09/2025

i feel fantastic and i’ve never felt as good as how i do right now

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Nicole Clark @nicoleclark.bsky.social · 19/09/2025

it feels so good to write again, to play games again, after the worst year of my life. i picked a ridiculous game (that i love!) to relearn controller skills with, but taking my time makes it possible aftermath.site/silksong-hol...

aftermath.site

A Condition Took Away The Use Of My Hands. Silksong Helped Me Rehab Them - Aftermath

Last year I woke up with the hands of an alien. Every item I grasped fell to the floor like so many grains of sand; every doorknob became a lock I couldn’t open. It didn’t hurt, but hundreds of dollar...

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Daniel Lewis @daniellewis.bsky.social · 12/09/2025

So fascinating that inverting - Y only is like using a joystick in flight sims - both X and Y is moving a camera in third-person adventure games - neither X nor Y is like embodying the character’s head in first-person shooters Which you invert depends on which type of game most influenced you

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Aftermath @aftermath.site · 14/08/2025

The iWalkFree is a well made product that lets you kinda walk if, like Chris, you have broken several bones in your foot. aftermath.site/iwalkfree-revi...

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Michal Caspi Tal, PhD @immunofever.bsky.social · 15/08/2025

You can learn more about capillaroscopy and how it's being used in our clinical study MAESTRO, as well as other technologies if you scroll through this thread here of short explainer videos by Caleb Rother, and undergraduate researcher in my lab: bsky.app/profile/immu...

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loscharlos @loscharlos.bsky.social · 15/08/2025

Incredibly exciting diagnostic tool potential — @immunofever.bsky.social MIT team is doing nailfold capillaroscopies on #LongCovid patients before and after a NASA lean test, and said the results have been incredibly striking compared to controls. My results were very abnormal !

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Daniel Lewis @daniellewis.bsky.social · 12/08/2025

could ibogaine treat #LongCovid? it looks like it could work on a range of neurological conditions warning: may cause ataxia, tremors, or nausea. in rare cases, may cause paralysis, seizures, mania, persistent hallucinations, respiratory failure, or heart failure www.nytimes.com/2025/08/11/u...

Mr. Perry’s hallucinations, induced by the powerful psychotropic drug ibogaine he had taken about 45 minutes before putting on his eye mask, continued for more than 12 hours. The experience was an ordeal. He vomited intermittently and lost much of his body coordination. It took all of Wednesday to recover.

But on Thursday morning, Mr. Perry recalled in describing his experience publicly for the first time, “I woke up very clearheaded, with this very warm feeling in my body. I was as calm and as happy as I’d been in memory.”

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Daniel Lewis @daniellewis.bsky.social · 08/08/2025

i really don’t need a customer service voice bot to have vocal fry

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Reposted by Daniel Lewis

Tom Kindlon @tomkindlon.bsky.social · 06/08/2025

🧵 Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome Full preprint can be read for free here: www.research.ed.ac.uk/en/publicati... #MEcfs #PwME 1/

ABSTRACT
Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a common, poorly
understood disease that has no effective treatments, and has long been underserved by
scientific research and national health systems. It is a sex-biased disease towards females that
is often triggered by an infection, and its hallmark symptom is post-exertional malaise. People
with ME/CFS often report their symptoms being disbelieved. The biological mechanisms
causing ME/CFS remain unclear. We recruited 21,620 ME/CFS cases and performed genomewide
association studies (GWAS) for up to 15,579 cases and 259,909 population controls with
European genetic ancestry. In these GWAS, we discovered eight loci that are significantly
associated with ME/CFS, including three near BTN2A2, OLFM4, and RABGAP1L genes that act
in the response to viral or bacterial infection. Four of the eight loci (RABGAP1L, FBXL4, OLFM4,
CA10) were associated at p < 0.05 with cases ascertained using post-exertional malaise and
fatigue in the UK Biobank and the Netherlands biobank Lifelines. We found no evidence of
sex-bias among discovered associations, and replicated in males two genetic signals
(ARFGEF2, CA10) discovered in females. The ME/CFS association near CA10 colocalises with a
known association to multisite chronic pain. We found no evidence that the eight ME/CFS
genetic signals share common causal genetic variants with depression or anxiety. Our findings
suggest that both immunological and neurological processes are involved in the genetic risk
of ME/CFS.

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Ntisec @ntisec.bsky.social · 06/08/2025

Breaking NEWS: 🚨 #DecodeME has discovered 8 possible genetic predispositions in the genes of #MEcfs patients that are not found in the control group. youtube.com/shorts/0S5u8...

youtube.com

DecodeME Initial DNA Results

YouTube video by DecodeME

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Daniel Lewis @daniellewis.bsky.social · 06/08/2025

consulted with a new functional medicine doctor who suggested - brain retraining - semax - extracorporeal blood oxygenation and ozonation or other IV ozone therapy - therapeutic plasma exchange - testing for and treating potential mold toxicity

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Reposted by Daniel Lewis

Long Covid Families @longcovidfam.bsky.social · 05/08/2025

We see officials saying #COVID cases are rising but healthy kids don’t need to worry. This study found reinfection doubles the risk of Long COVID in kids. Sincerely, families who believed you when you said our kids weren’t at risk — and now they’re disabled.

cidrap.umn.edu

COVID-19 re-infection doubles risk of long COVID in kids, young adults, data reveal

The second infection was also tied to a 50% or greater increase in several specific long-COVID conditions, including myocarditis and fatigue.

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 03/08/2025

Great article from @juliametraux.bsky.social in @motherjones.com on the Trump administration ceasing to monitor disability inclusion & axing the 7% goal for govt contractors. After COVID, there are more highly-qualified working disabled people than ever before. www.motherjones.com/politics/202...

motherjones.com

Labor Department moves to end disability hiring goal for federal contractors

Secretary Lori Chavez-DeRemer plans to axe a longstanding, successful incentive program for disabled workers.

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Daniel Lewis @daniellewis.bsky.social · 03/08/2025

*four empty extra-large pill organizers FTFY

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Daniel Lewis @daniellewis.bsky.social · 03/08/2025

Signed up! My question for @simmaronresearch.bsky.social: “How did you select the dosage for the trial? Why not use the higher doses that are standard for its on-label indications?”

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Reposted by Daniel Lewis

Solve M.E. @solveme.bsky.social · 17/06/2025

Sign up for our Sept. 4 webinar w/Solve #MECFS Catalyst Award winner Simmaron Research. Panelists Dr. C. Gunnar Gottschalk, Dr. Avik Roy, & Dr. Stephanie Grach will discuss the study, “Low Dose Rapamycin in ME/CFS, Long COVID, and Other Infection Associated Chronic Conditions.” 👉 ow.ly/oxC850WaYA3

Graphic depicts Simmaron Research and Solve M.E. logos with text promoting a Thursday, Sept. 4 webinar at 3 pm PT/6 pm ET. Title of webinar is "Targeting Autophagy: A Clinical Trial of Low-Dose Rapamycin for ME/CFS, Long Covid, and IACCIs." Pictured are 4 panelists: Simmaron CEO Dr. C Gunnar Gottschalk (Blonde hair, white shirt), Simmaron CSO Dr. Avik Roy (Black hair, blue shirt), Dr. Stephanie Grach (brown hair, blue shirt), and Solve CEO Emily Taylor (brown hair, blue shirt).

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Daniel Lewis @daniellewis.bsky.social · 02/08/2025

the fact that they introduction to the Wikipedia page for #MCAS says most people who think they have it actually have conversion disorder and nothing in the article mentions #ME or #LongCovid at all is bullshit

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Julia Métraux @juliametraux.bsky.social · 27/07/2025

63. I think more disabled people would survive climate disasters if their neighbors checked on/helped them.

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Julia Métraux @juliametraux.bsky.social · 27/07/2025

61. More non-disabled parents of disabled kids should learn about disability culture and history.

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Julia Métraux @juliametraux.bsky.social · 27/07/2025

58. I actually think "brain fog" describes the sensation pretty well as someone who has it, but know some people disagree.

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Julia Métraux @juliametraux.bsky.social · 27/07/2025

57. People shouldn't be weird that wheelchair users can be ambulatory wheelchair users.

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Julia Métraux @juliametraux.bsky.social · 27/07/2025

55. Stop trying to "cure" autism and cure things people want to be cured who have them (cystic fibrosis, sickle cell disease, autoimmune disorders...)

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Julia Métraux @juliametraux.bsky.social · 27/07/2025

53. I'm very glad that Avatar: The Last Airbender has disability representation. Loved that show as a kid.

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Julia Métraux @juliametraux.bsky.social · 27/07/2025

50. Allowing everyone to work from home (or at least most of the time) is an example of a universal accommodation that benefits disabled people.

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Julia Métraux @juliametraux.bsky.social · 27/07/2025

43. It is legal to specifically pay disabled people less than minimum wage in more than half of US states.

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Julia Métraux @juliametraux.bsky.social · 27/07/2025

41. People aren't wheelchair-bound. Wheelchairs help with independence! The -bound is negative and suggests otherwise.

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Julia Métraux @juliametraux.bsky.social · 26/07/2025

31. Just because [something] isn't disabling for you, doesn't mean it isn't disabling for other people.

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Julia Métraux @juliametraux.bsky.social · 26/07/2025

28. Always take the opportunity to listen to disabled elders of how things were worse before Section 504 of the Rehab Act and the ADA.

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Julia Métraux @juliametraux.bsky.social · 26/07/2025

19. I think internalized ableism leads to more chronically ill people not identifying as disabled.

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Julia Métraux @juliametraux.bsky.social · 26/07/2025

17. Eugenics is everywhere

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Julia Métraux @juliametraux.bsky.social · 26/07/2025

14. Whether or not someone discloses their disability is completely their choice

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Julia Métraux @juliametraux.bsky.social · 26/07/2025

8. People can have a positive relationship with one disability they have but a negative one with another.

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Julia Métraux @juliametraux.bsky.social · 26/07/2025

6. The amount of disability history taught in school is pathetic.

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The Sick Times @thesicktimes.org · 27/07/2025

Thank you to everyone who attended our virtual town hall last week! We appreciated your questions and feedback! If you weren't able to make it, you can watch @mileswgriffis.bsky.social and @betsyladyzhets.bsky.social share updates about our editorial plans and finances on YouTube. bit.ly/4meJGsE

bit.ly

Virtual town hall recording, July 2025 - The Sick Times

On July 24, The Sick Times hosted a virtual town hall. Co-founders and editors Miles Griffis and Betsy Ladyzhets shared updates about our editorial plans and finances and took questions from readers. ...

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Daniel Lewis @daniellewis.bsky.social · 27/07/2025

this was truly the week that was youtu.be/7jARdWfJulo

youtu.be

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The Sick Times @thesicktimes.org · 22/07/2025

German start-up Berlin Cures announced it would not conduct additional research after a failed #LongCOVID clinical trial of novel drug BC 007. In collaboration with @statnews.com, @betsyladyzhets.bsky.social dives deep on what went wrong with the trial and what's next for BC 007. bit.ly/44KAwhT

Graphic showing the top of Berlin’s TV Tower, edited to look like part of an IV tube. The graphic has a light blue background with white molecular structure diagrams in the top left. The text reads, “The Sick Times x STAT. Berlin Cures’ failed Long COVID clinical trial yields lessons on study design. BC 007, a German infusion drug that targets autoantibodies, is heading for new study. By Betsy Ladyzhets.”

The Sick Times has learned that BC 007 may yet have a future. In an interview this summer, sharing the first news about this drug since late 2024, former Berlin Cures CEO Oliver von Stein said he is leading a new start-up, called APTA Therapeutics, that has acquired the prior company’s assets and is planning further research in collaboration with Long COVID and related disease experts.

“We do want to give patients hope that this drug will continue in its clinical development path,” von Stein said. He acknowledged that Berlin Cures’ phase II trial was “not an optimum study in design” and said that future research will learn from its shortcomings.

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