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Ody @OdyO11

Chronically ill. Medical research, better care for underresearched & rare conditions, disability rights & ethics. @[email protected] 🌌 OdyOdy.b... Joined November 2018
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Ody retweeted
maureviv Profile Picture

aure 🍂🌰 @maureviv

2 days ago

As expected...

HelenBranswell Profile Picture

Helen Branswell 🇨🇦 @HelenBranswell

2 days ago

As expected...

Ody retweeted
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Hannah Davis @ahandvanish

7 days ago

Would like to see this conceptual shift more broadly - PEM is not a symptom, but a physiological state where a *lot* is going wrong; many symptoms can be part of that PEM state. #longcovid

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Todd Davenport @sunsopeningband

a week ago

Would like to see this conceptual shift more broadly - PEM is not a symptom, but a physiological state where a *lot* is going wrong; many symptoms can be part of that PEM state. #longcovid

Ody retweeted
annethegnome Profile Picture

Gnome "doing their darndest" Anne @annethegnome

a week ago

Just a reminder, misanthropy isn't sexy. Before you say "humans are a scourge", remember that many Indigenous peoples have tended the Earth for millenia & continue to fight back. Denouncing humanity frames our current harmful systems as "human nature" but that's NOT TRUE.

Ody retweeted
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Prof. Akiko Iwasaki @VirusesImmunity

a week ago

Preventing infection is the best way to avoid diseases like #PAIS. A new study from our team @tianyangmao, Jooyoung Kim, @marioph13 et al shows that a generic antibiotic neomycin acts on the host immune system in the👃🏽to trigger antiviral resistance. (1/)🧵…

Ody retweeted
annethegnome Profile Picture

Gnome "doing their darndest" Anne @annethegnome

2 weeks ago

There are fungi at Chernobyl that EAT radiation and nuclear fallout – and that’s only the start of this wild story 🍄☢️ Buckle up for a wild thread about radioactive boars, fungal space suits, radiation-detecting fungi, black frogs and a good dose of hope! 🧵

Ody retweeted
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Catherine Hale @octoberpoppy

2 weeks ago

❓📣Who are the academics and researchers living with energy limiting conditions working in social sciences, Disability Studies, medical humanities or related fields? I know there are many of you out there! Please reply if this is you And RT to get the word out 🙏

Ody retweeted
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Sabrina Poirier (On Hiatus) @Sabrina_Poirier

2 weeks ago

Could it be MCAS? Tissue growing where it shouldn’t? Hormones? Structural issues? Look deeper. We consistently leave people to suffer because of very outdated views on pain. I don’t care how much weak/subjective research comes out. We live with it. You’ve got it wrong. 2/

Ody retweeted
Sabrina_Poirier Profile Picture

Sabrina Poirier (On Hiatus) @Sabrina_Poirier

2 weeks ago

Pain is not a “functional” condition. It is not a “false signal” either. And IF my “fight or flight” is activated, maybe look to understand why, instead of baseless assumptions that it’s “stress”. Look deeper. 1/

Ody retweeted
angryhacademic Profile Picture

Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic

2 weeks ago

Maybe it'd be less ridiculous if all these things were feasible, accessible, & actually brought significant benefits, but for many of us, none of those criteria are consistently met. All these things might result in being able to stand up a few mins longer. Hardly groundbreaking

Ody retweeted
angryhacademic Profile Picture

Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic

2 weeks ago

Im not denying that these can help ofc...but between drinking & peeing, planning regular (salty) meals, wearing uncomfortable stockings, feeling guilty for lying down & feeling awful being upright, plus ALL THE SYMPTOMS OF POTS, what the hell else have we got time to do??

Ody retweeted
angryhacademic Profile Picture

Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic

2 weeks ago

I dont think #POTS experts realise how all-consuming the first line treatments can be: 🚰Drink loads of water...that you can't retain because part of POTS is water-retaining endocrine dysfunction (and going to toilet every 30 minutes with orthostatic intolerance is a breeze 🙄)

Ody retweeted
Nicole_Lee_Sch Profile Picture

Nicole Lee Schroeder, PhD @Nicole_Lee_Sch

2 weeks ago

All these debates about why students are absent. Just ASK them. My students have reported that theyre: frequently sick, unendingly burnt out, they worry their degree won't lead to a job they can even bear, and late-stage capitlism is destroying their hopes for eco stability 1/2

Ody retweeted
ValeriEliotSmit Profile Picture

Valerie Eliot Smith @ValeriEliotSmit

3 weeks ago

2/ The 2021 NICE guideline for this illness references the need for tube-feeding in cases such as Millie's. However, #ME, especially in its severe form & particularly in young women, is an illness which inhabits a world of widespread cultural and medical ignorance and prejudice.

Ody retweeted
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Valerie Eliot Smith @ValeriEliotSmit

3 weeks ago

#BringMillieHome 1/9 🧵 There has been much recent media coverage/discussion about the case of Millie McAinsh. Millie is a young woman who has been diagnosed with #SevereME. She was admitted to the Royal Lancaster Infirmary some time ago as she was unable to ingest/digest food.

Ody retweeted
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Christoph Ströck @cstroeckw

3 weeks ago

"It's still not discussed enough how the majority of practicing physicians worldwide, particularly in sub-specialties frequently interacting with #MECFS patients, have a considerable conflict of interest, leading to an inherent bias against updating their knowledge base."

Ody retweeted
jenbrea Profile Picture

Jennifer Brea🦒 @jenbrea

3 weeks ago

Anyone with ME needing an NG tube, so important to rule out MCAS, MALS, Nutcracker syndrome, CCI, and other conditions that can cause gastroparesis.

Ody retweeted
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Jennifer Brea🦒 @jenbrea

4 weeks ago

This is great. I also wonder if blood flow issues were a longer-standing, pre-virus part of my life.

ar_pnw Profile Picture

Austin Robert @ar_pnw

4 weeks ago

This is great. I also wonder if blood flow issues were a longer-standing, pre-virus part of my life.

Ody retweeted
jenbrea Profile Picture

Jennifer Brea🦒 @jenbrea

4 weeks ago

Wondering what you guys think the biggest issues are the ME community faces? My feed is filled with Long Covid. We love and support you guys as allies (and many of you, as fellow ME patients) but I'd love to hear where you think we are now re: treatment and care of ME.

Ody retweeted
jayletay Profile Picture

Jessica Taylor-Bearman @jayletay

4 weeks ago

My books are: A Girl Behind Dark Glasses A Girl in One Room A Girl Beyond Closed Doors These are my two YouTube videos: The World of One Room youtu.be/VH-puNCQxh4?si… Seven Years in the Making youtu.be/NL7YbpYVVz0?si…

Ody retweeted
jayletay Profile Picture

Jessica Taylor-Bearman @jayletay

4 weeks ago

So please support Myalgic Encephalomyelitis suffers. Let us tell our stories. Let there be change. Let the media speak to us. Because at least 12 years ago was the first time I personally asked on YouTube for the world to wake up to this disease. Why does no one listen? (7)

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