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Ginger Billie @gingerbillie.bsky.social · 2h

Day 2. GI symptoms are up as well as base of skull/neck and eye pain.

Ginger Billie @gingerbillie.bsky.social · 1d

Maraviroc experiment started this morning.

I took a 150 mg pill and cut it into 8 pieces so I’m started very low doing that once per day in the morning.

Let’s see how it goes.

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Reposted by Ginger Billie

Sue Poncin @poncin-sue.bsky.social · 3h

The science is catching up to what most with Long Covid and those who treat us already know. Therapists and doctors have compared my symptoms to MS all along.

Hope looks like solving the mysteries behind Long Covid 🌈

thetranscendedman @atranscendedman.bsky.social · 9h

Scientists analyzed blood cells from people with COVID-19, multiple sclerosis, and Alzheimer’s.

Using deep learning, they found shared immune genes like XIST and HLA-DRB5 that may link COVID-19 inflammation to long-term neurodegeneration.

www.researchsquare.com/article/rs-7...

Linking COVID-19 to Neurodegeneration: A Single-Cell Deep Learning Study of PBMCs in Multiple Sclerosis and Alzheimer’s Disease

COVID-19 has increasingly been linked to neurological complications that may overlap with those observed in neurodegenerative and autoimmune diseases. In this study, we analyzed single-cell RNA-sequen...

www.researchsquare.com

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Reposted by Ginger Billie

Hannah Thomasy @hannahthomasy.bsky.social · 1d

Stressed out bees become pessimistic, have lower expectations that good things will happen. Same bees, same.
🧪🪲🧠
royalsocietypublishing.org/doi/10.1098/...

Physically stressed bees expect less reward in an active choice judgement bias test | Proceedings of the Royal Society B: Biological Sciences

Emotion-like states in animals are commonly assessed using judgment bias tests that measure judgements of ambiguous cues. Some studies have used these tests to argue for emotion-like states in insects...

royalsocietypublishing.org

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Ginger Billie @gingerbillie.bsky.social · 9h

THIS!!

Since I got sick my period is DARK and the clots are huge.

I took a picture to my gynecologist of a clot that was the size of my full palm (not including the tendrils, just the base) and she shrugged. 🤷‍♀️

I often call my husband into the shower and say, “OMG LOOK HOW BIG THIS ONE IS.”

Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 10h

This thread 👇🏻 💯

One question i always ask clients who could be menstruating is about changes in their period blood - its something i noticed correlated with my own pain/symptoms: darker, clottier, and thicker = hell

Chronically Surviving @chronically2784.bsky.social · 21h

...wait. Holy moly this is something I have seen change with my period. I was so busy focusing on the obvious, huge clots that I hadn't consciously thought about blood colour until now.

Reduction in clots + change in blood colour since taking fibrinolytic/proteolytic enzymes since Feb.

1/

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Ginger Billie @gingerbillie.bsky.social · 10h

Not great sleep. First night of Maraviroc very similar to valtrex side effects. Lots of wake ups and vivid dreams.

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Ginger Billie @gingerbillie.bsky.social · 1d

Headache and joint pain have entered the chat.

Ginger Billie @gingerbillie.bsky.social · 1d

Maraviroc experiment started this morning.

I took a 150 mg pill and cut it into 8 pieces so I’m started very low doing that once per day in the morning.

Let’s see how it goes.

Ginger Billie @gingerbillie.bsky.social · 1d

I pushed back, but as he was getting angrier I went into desesclation mode.

After the meeting I get a message that says, “I wanted to apologize. I hit my head on Sunday and I’ve been having issues with rage since then.”

I said, “Thank you for the apology“ but I could not stop thinking about if he

Ginger Billie @gingerbillie.bsky.social · 1d

In the Anything But Covid (ABC) news today, I am seeing a slow uptick in adults mentioning tonsil removal bc they are chronically sick.

My best friend just had it done. her words, “I know I probably have Long Covid but just wanna try this first.”

Liz Plank also revealed an upcoming removal.

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Ginger Billie @gingerbillie.bsky.social · 1d

UCSB physics department let‘s goooooooo!!!!!!!!

news.ucsb.edu/2025/022111/...

UCSB physics professors John Martinis and Michel Devoret win 2025 Nobel Prize in Physics

news.ucsb.edu

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Ginger Billie @gingerbillie.bsky.social · 1d

You know what I’ve been particularly mad about is not having the ability to buy a house younv and healthy so I could put energy into making it cute and my own.

Anything we rent or maybe one day buy has to be turn key bc I’m so damn sick!

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Ginger Billie @gingerbillie.bsky.social · 1d

This is good to know, thank you for the heads up!

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Ginger Billie @gingerbillie.bsky.social · 1d

Thank you. I am so very nervous. These positive thoughts help! 💛

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Reposted by Ginger Billie

Chronic Illness Humor @chronicillness.bsky.social · 1d

My Brain: You have an an APPOINTMENT!

Me: Yes, in a few hours.

My Brain: But, the APPOINTENT!

Me: I know about the appointment, brain, but we can do other things until then.

My Brain: APPOINTMENT

MyBodyIsTryingTokillMe.com

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Reposted by Ginger Billie

Chantzy @chantzy.bsky.social · 1d

When leaders say "there are more important things to focus on" than the current pandemic, they are saying that there are more important things to focus on than brain injury, organ damage, long term disability in kids, immune dysfunction etc - and that sounds totally absurd if you think about it

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Ginger Billie @gingerbillie.bsky.social · 1d

Maraviroc experiment started this morning.

I took a 150 mg pill and cut it into 8 pieces so I’m started very low doing that once per day in the morning.

Let’s see how it goes.

2 6

Reposted by Ginger Billie

Kirsten Grady @mrskgrady.bsky.social · 4d

Disability is the only marginalized group you can join at any time. One accident. One illness. One shift in your body. Growing older. That’s not fear... it’s perspective. Inclusion isn’t “for them.” It’s for all of us.
#NDEAM #DisabilityJustice #AccessForAll

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Reposted by Ginger Billie

Chantzy @chantzy.bsky.social · 3d

Yesterday's Living with Long Covid exhibit launch got some media coverage. 👏🏼

Hopefully more to come! The event is on until March 22 if you missed it

globalnews.ca/video/114650...

Photo exhibition highlights reality of Canadians with long COVID | Watch News Videos Online

Watch Photo exhibition highlights reality of Canadians with long COVID Video Online, on GlobalNews.ca

globalnews.ca

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Ginger Billie @gingerbillie.bsky.social · 3d

I hope this actually comes to fruition. Many institutions have been working on this for a looongggg time.

When I was doing an internship at City of Hope during undergrad this is exactly what we were working on. That was almost 20 years ago.

Chantzy @chantzy.bsky.social · 3d

A simple blood test could soon make it possible to screen for breast cancer & identify those high at risk

montreal.citynews.ca/2025/10/01/b...

Breast cancer could be detected with a simple blood test: Montreal research

A simple blood test could soon make it possible not only to screen for breast cancer, but also to identify women at higher risk, thanks to the work of Montreal researchers. This would make it possible...

montreal.citynews.ca

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Reposted by Ginger Billie

Chronic Illness Humor @chronicillness.bsky.social · 3d

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Ginger Billie @gingerbillie.bsky.social · 3d

SF Bay Area folks - how do we get something like this at one of the bay museums?

Where do we start? We need this here.

Chantzy @chantzy.bsky.social · 4d

It was standing room only at today's Living with Long Covid exhibit at the @museumofvan.bsky.social!

I was moved to tears by some of the personal stories on display. Such a great event

Long Covid researcher and activist Kayli Jamison speaks at today's Long Covid launch event at the Museum of Vancouver

Selfie at event wearing a white headstrap zimi mask with purple flowers

One of the stories that resonated - "I was able to venture out for an ice cream cone with a friend this day. I don't feel comfortable eating in restaurants or going to bars like most people my age. Spring and summer are nice beaches they give me more options to spend time outdoors with fewer people around - which means I get to see the people I love more often. Even short moments like this help me feel a little more like a "normal" 24 year old again

Some of the personal stories on display. A combo of text and pictures artistically laid out on white walls with brightly coloured orange and yellow backgrounds

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Ginger Billie @gingerbillie.bsky.social · 4d

When I tell people the most truly self serving thing you can do is want a just and equitable society.

Audre Lorde said it best, “I am not free while any woman is unfree, even when her shackles are very different from my own.”

For this and everything.

Oni Blackstock, MD MHS @oniblackstock.bsky.social · 4d

A recent study shows that the presence of high levels of structural inequity in a society causes changes to children's brains, both children from families w/ lower incomes as well as those from wealthy families.

Take home: structural inequity harms everyone (with the most vulnerable most impacted).

Study links greater inequality to structural changes in children’s brains

Researchers say findings show inequality creates toxic environment and reducing it is ‘a public health imperative’

www.theguardian.com

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Ginger Billie @gingerbillie.bsky.social · 4d

Covid is 100% doing something to our eyes.

I had intermittent blurry vision (that got better with nose PRP), was just in the ER for what they thought was optic neuritis but now they think was uveitis.

My eyes are healing from that event but when I push too much now my eyes HURT.

thetranscendedman @atranscendedman.bsky.social · 4d

Cleveland Clinic researchers studied over 150,000 US patients and found that COVID-19 vaccination lowered the odds of retinal swelling by 32%, vitreous bleeding by 45%, and optic neuritis by 40%.

COVID-19 caused more double vision than influenza.

www.nature.com/articles/s41...

Ophthalmic complications associated with COVID-19: a large US national database analysis - Eye

Eye - Ophthalmic complications associated with COVID-19: a large US national database analysis

www.nature.com

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Ginger Billie @gingerbillie.bsky.social · 4d

This was a near perfect dance.

Bravo to Mark Ballas on the choreography.

youtu.be/QvRcDaOlnOw

Whitney Leavitt’s TikTok Night Samba | Dancing with the Stars

YouTube video by Dancing With The Stars

youtu.be

Ginger Billie @gingerbillie.bsky.social · 4d

One of the worst parts about needing to lie down all the time is after you‘ve eaten you‘re especially tired and need to lie down but your digestive tract was designed to be upright after eating.🥣 🚶‍♀️

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Ginger Billie @gingerbillie.bsky.social · 4d

💛💛💛💛💛🙌🏻🙌🏻🙌🏻🙌🏻

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