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Call me Ishmael

@thewhitewhale.bsky.social

210 followers 390 following 240 posts

books, words, left politics, learning stuff, long covid (he/him). In Australia, but a citizen of the world. Views expressed here are my own.

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Call me Ishmael @thewhitewhale.bsky.social · Nov 18

Hello world.
I'm Michael, a thirty something dude from Australia. Interested in books (literary/fantasy/sci-fi/history/philosophy/etc) and other places cool words are written. Always keen to learn new things.
Afflicted with long covid, and following the science.

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Call me Ishmael @thewhitewhale.bsky.social · 1d

"All I say is that on this earth there are pestilences and there are victims - and as far as possible one must refuse to be on the side of the pestilence." - Albert Camus, The Plague 📚💙

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The Sick Times @thesicktimes.org · 1d

A group of 53 people with #LongCOVID joined a clinical trial for Vyvgart. For many of them, the treatment changed everything.

Then, without warning, Argenx canceled the trial.

Most of them have now relapsed.

They're calling on the NIH and HHS to study the drug: bit.ly/48l1Qp5

A photo Nicole Barrick, a woman in a pink KN95 mask, receives an infusion of Vyvgart. The text reads, "The Sick Times. Vyvgart brought us back to life, but the Long COVID trial was canceled. We are calling on the NIH and HHS to study the drug. By Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White."

"For those living with Long COVID, every ounce of hope is hard-won. This isn’t just about physical symptoms. It’s about the emotional toll of being given hope — and then having it taken away." - Vyvgart clinical trial participants
Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White

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Dick Zoutman @dickzoutman.bsky.social · 1d

Enduring Outcomes of COVID-19 Work Absences on the US Labor Market url: jamanetwork.com/journals/jam...

Enduring Outcomes of COVID-19 Work Absences on the US Labor Market

This cohort study examines the extent to which COVID-19 continues to generate work absences and decrease labor force participation beyond the pandemic period in the US.

jamanetwork.com

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Call me Ishmael @thewhitewhale.bsky.social · 2d

Reporting from NZ facing the realities of Long Covid. www.1news.co.nz/2025/10/10/o...

Offered rest home care at 24: the lonely plight of young Kiwis with long Covid

A group of young Kiwis prove what international studies show: that long Covid has a particularly debilitating effect on young people. But how much medical support is there for them?

www.1news.co.nz

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George Monbiot @georgemonbiot.bsky.social · 4d

ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...

Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome

Research could offer hope for ME patients – but some experts urge caution and say more studies needed

www.theguardian.com

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Julia Doubleday @juliadoubleday.bsky.social · 6d

Nobody has Long COVID, but everybody has brain fog, cognitive decline and memory loss. I talk about the overwhelming scientific evidence that COVID damages the brain, and the overwhelming social unwillingness to acknowledge it in my latest:

www.thegauntlet.news/p/when-will-...

When Will the Lion Concern Himself

Joking memes make light of the uncomfortable reality: everyone's got a little of that post-COVID brain damage these days

www.thegauntlet.news

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#9 Dream @gayfabfourfan.bsky.social · 8d

Can’t emphasize enough that new studies like this come out ALL THE TIME but are usually ignored by basically everyone, including the media & the medical establishment. It’s bananas. #COVID

COVID-19 infection associated with increased risk of new-onset vascular dementia in adults ≥50 years - npj Dementia

npj Dementia - COVID-19 infection associated with increased risk of new-onset vascular dementia in adults ≥50 years

www.nature.com

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Call me Ishmael @thewhitewhale.bsky.social · 8d

"When you see the suffering and pain that it brings, you have to be mad, blind or a coward to resign yourself to the plague." - Albert Camus

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Matt Zoller Seitz @mattzollerseitz.bsky.social · 9d

Please use alt text when posting illustrations or photos or other images. I realize it feels like an inconvenience if you didn't ever do it at the other place, but folks who need it are a zillion times more inconvenienced every single day.

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Call me Ishmael @thewhitewhale.bsky.social · 9d

It is no coincidence that those most willing to collaborate with the coronavirus are also those who will collaborate with fascism.

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Tom Kindlon @tomkindlon.bsky.social · 14d

"Long COVID is not FND, but some patients are getting diagnosed with it. Here’s what to do if it happens to you" (Sept 26) by @davetuller1.bsky.social

thesicktimes.org/2025/09/26/l...

There are some references to ME and generally it seems just as relevant to those with ME/CFS

#LongCovid #MEcfs
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Key points you should know:

Some people with Long COVID are receiving potentially unhelpful diagnoses of functional neurological disorder (FND), a condition in which people experience neurological symptoms that cannot be attributed to known or currently identifiable pathophysiological causes.

FND proponents theorize that it is a “brain network” disorder characterized by factors such as hyperawareness of bodily sensations and faulty perceptions of self-agency, but the diagnosis does not explain Long COVID symptoms.

Researchers, clinicians, and people with Long COVID say that FND treatments can be unhelpful or even harmful and that the diagnosis can lead to delays in appropriate care for symptom relief.

Since having FND in medical records can lead doctors to attribute subsequent medical complaints to the condition, some seek to have the diagnosis changed or removed.

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Dr David Joffe MB BS(Hons), PhD, FRACP @davidjoffe64.bsky.social · 16d

🧠 Daily Feed of Brain Damage 🧠

Part 3 🤦🏻‍♂️

doi.org/10.1212/WNL....

Rising Cognitive Disability as a Public Health Concern Among US Adults | Neurology

Background and ObjectivesCognitive disability—defined by the Behavioral Risk Factor Surveillance System (BRFSS) as serious difficulty concentrating, remembering, or making decisions because of a physi...

doi.org

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Carolyn Barber, MD @cbarbermd.bsky.social · 17d

Scientists at CSIC just tested an intranasal COVID-19 vaccine in mice.

Result? 100% protection after 2 doses. 🐭💨

Unlike shots in the arm, this nasal spray builds immunity where the virus enters — the respiratory tract.

#BlueSky #MedSky #SciSky #IDSky #NewsSky #NurseSky #EMSky #PedsSky

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Call me Ishmael @thewhitewhale.bsky.social · 17d

You can search the review's market actions - www.tga.gov.au/resources/fa..., the market recalls - www.tga.gov.au/resources/fa..., or the database of recalls - apps.tga.gov.au/PROD/DRAC/ar... to check if your masks are compliant. A P2 which doesn't meet the P2 standard might as well be a baggy blue.

www.tga.gov.au

Call me Ishmael @thewhitewhale.bsky.social · 17d

The TGA has completed their review of face masks and respirators for compliance with Australian Standards. Quite a few non-compliances (including the AMDs which I bought because black is cool but haven't used much because the fit didn't seem great). www.medicalrepublic.com.au/many-product...

Many products used to protect healthcare workers during covid weren’t up to scratch - Medical Republic

A post-market review of disposable face masks and respirator products revealed one in four samples failed to properly filter out small, aerosolised particles.

www.medicalrepublic.com.au

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Kathleen Bachynski @bachynski.bsky.social · 18d

This is huge: “A drug that provides near-perfect protection against H.I.V. with shots just twice a year will be made available at $40 per patient annually in low- and middle-income countries, offering new hope… making lenacapavir a realistic choice in countries with constrained resources.”

Philanthropies Strike a Promising Deal to Turn Back H.I.V.

www.nytimes.com

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 18d

Our current admin hates disabled people 🌈
www.afge.org/article/cdc-...

CDC Removes Disability as Reasonable Accommodation for Remote Work, Backtracks After Union Pressure

Leadership at the Centers for Disease Control and Prevention had said employees with disabilities would no longer be approved for telework or remote work as a reasonable accommodation – a stunning vio...

www.afge.org

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Call me Ishmael @thewhitewhale.bsky.social · 18d

But I'm counting my blessings that I can still go into the world occasionally. A luxury many folks with LC don't get.

Call me Ishmael @thewhitewhale.bsky.social · 18d

Being out in the world as a Covid-conscious person is disorienting - seeing virtually everyone else going about their lives like it's 2019, totally unaware or uncaring that they could be one infection away from having their lives turned upside down by disability.

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onion person @junlper.beer · 18d

the fact that so many people frame autism as “a problem that needs to be solved” is a constant reminder that being “not normal” isn’t acceptable to a large amount of the world. it’s the same reason there’s a trans panic right now too. they think people are defective

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Kelly @broadwaybabyto.bsky.social · 19d

Today’s autism announcement was just as bad as we feared

Trump blamed Tylenol & vaccines for autism

They encouraged women to just “tough out” their pain

They praised people who don’t “need” meds or vaccines

These are eugenicist talking points & they’re devastating to the disability community:

Trump's Big Autism Announcement and What It Means for the Disability Community

The MAHA team came out swinging today against vaccines, Tylenol and more. Their big autism announcement was riddled with eugenicist language designed to blame and punish people for their disabilities.

www.disabledginger.com

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Sarah Lyons @citymystic.bsky.social · 20d

open.substack.com/pub/houseofm...

Wrote about the radical act of returning to one's body in a digital age designed to detach us from them.

You Don't Need to Log off, You Need to Become Sensual

The digital world the wealthy are creating is designed to detach us from our bodies

open.substack.com

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Call me Ishmael @thewhitewhale.bsky.social · 20d

Slide 14 suggests pretty optimistic assumptions on how common LC is - only around 1% of cases are LC cases.

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Kelly @broadwaybabyto.bsky.social · 20d

You’re much closer to becoming disabled or homeless than you are to becoming rich and wealthy.

It’s not a moral failing. It’s not something you can “try harder” your way out of.

We need robust social supports & safety nets to ensure everyone is properly cared for.

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David Kronig @davekronig.bsky.social · 20d

This is very true, and also, disabled people have been feeling this for quite a while, including on a huge scale since 2020 as we've learned just how expendable our lives are the second that we inconvenience capitalism

Kat Tenbarge @kattenbarge.bsky.social · 20d

We really can’t understate the psychic toll of knowing that the United States government is trying to kill as many people as possible

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