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Ginger Billie @gingerbillie.bsky.social · 1d

Maraviroc day 5- I’m in tired but wired overdrive. Day 3 of no sleep.

Upping antihistamines today to see if that helps. OCD, ruminating thoughts and brain on fire feeling are on overdrive.

I’m really, so tired of all this.

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Reposted by Ginger Billie

emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 2d

I’m so tired of hearing “the pandemic was bad for my mental health & that’s why I refuse to acknowledge it’s still tearing apart hundreds of millions of lives & I definitely will never mask again & anyone who talks about it in the present tense is weird & wrong & bad & also perimenopause is rough!”

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Ginger Billie @gingerbillie.bsky.social · 2d

I do not think, in my life, I have met a disease that is as cruel, long term, as ME/CFS.

I wrote a card to a researcher thanking them for their work and in it put, “I am too sick to live but too well to die”.

Tom Kindlon @tomkindlon.bsky.social · 2d

"I still desperately want to live"

A woman who is turning 30 who has spent the last decade living with severe ME reflects on her life

meglobalchronicle.wordpress.com/2023/12/23/i...

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @ludiekje.bsky.social

I still desperately want to live
Gepubliceerd op 23 december 2023
One of my favourite films is 13 Going On 30 (honestly, it’s mostly for Mark Ruffalo) and lately I’ve been thinking a lot about Jennifer Garner’s character Jenna chanting “thirty and flirty and thriving” at 13 in her parents basement; then I try to remember all the things I said to myself about what my life might look like at 30 when I was just 13.

I wanted to be a forensic psychologist and a vet and a mechanic and a midwife and an ecologist and an infant school teacher and a counsellor and a forensic pathologist (until I realised dead bodies of any species freak me out). I never could decide what I wanted my life to look like when I grew up but I knew I wanted to do so much.

I turn 30 next month and I have spent the last decade living with Severe M.E. There have been months of time within that when I would have been classed as having Very Severe M.E and periods of time when I would have been more towards being Moderate-Severe. There have been times when I have felt desolate and times when I have felt so much joy. There has been great loneliness and there has been the love of community. There have been times when I did not know if I’d live to see my 30s and times when I had unbelievable amounts of hope that things would get better. I have survived it all.

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Ginger Billie @gingerbillie.bsky.social · 2d

Rough night with little sleep.

I wish all meds I try didn’t affect my sleep so much. 😴

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Ginger Billie @gingerbillie.bsky.social · 3d

That’s right! 🙌🏻

a woman in a plaid shirt and blue jeans says yes

Alt: a woman in a plaid shirt and blue jeans says yes

media.tenor.com

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Reposted by Ginger Billie

Denis - The COVID Info Guy @thecovidinfoguy.bsky.social · 4d

USA: Mask rules are returning to Bay Area health care settings from Nov 1 as COVID, flu, and RSV cases rise.

Counties including Contra Costa, Santa Clara, Sonoma, Napa, San Mateo, and Santa Cruz will require masks for workers, and in some cases patients and visitors, through spring.

Mask mandates return in parts of the Bay Area as virus season nears

By Aidin Vaziri,
Staff Writer
Oct 7, 2025

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Reposted by Ginger Billie

valebodi.bsky.social @valebodi.bsky.social · 4d

When “Rest” does not feel like an accurate term (in regard to #ME/CFS)

To me, rest has a positive connotation. My idea of resting when I was healthy was taking a long hot shower, taking a bubble bath, having a spa day, lounging on the beach, reading a book, or binge watching a tv series in bed.

From the cfs community on Reddit

Explore this post and more from the cfs community

www.reddit.com

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Ginger Billie @gingerbillie.bsky.social · 3d

Maraviroc has made me very, very fatigued.

Making breakfast completely wiped me. My whole body feels like lead and my brain fog 😶‍🌫️ is at 💯. Words are tough to come by today.

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Reposted by Ginger Billie

Billy Hanlon @bhanlon15.bsky.social · 3d

MedPage Today: 'Medicaid Work Requirements Will Devastate People With Invisible Disabilities'

— ME/CFS and long COVID patients must qualify as "medically frail"

by Laurie Jones

www.medpagetoday.com/opinion/seco...

Opinion | Medicaid Work Requirements Will Devastate People With Invisible Disabilities

ME/CFS and long COVID patients must qualify as 'medically frail'

www.medpagetoday.com

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Reposted by Ginger Billie

Julia Métraux @juliametraux.bsky.social · 3d

Yes. Social media is how I've made friends with other chronically ill people.

Conrad Hackett @conradhackett.bsky.social · 5d

Has anything great happened in your life because of social media?

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Reposted by Ginger Billie

Lucius Fox In The Box @carnegro.bsky.social · 3d

Pope Leo is spitting.

www.npr.org/2025/10/09/n...

Leo questioned a world where the wealth of the elite grows
"exponentially" while many "millions of people die of hunger or survive in conditions unfit for human beings." He also criticized "ideologies that defend the absolute autonomy of the marketplace and financial speculation,"
with false promises "that a free-market economy will automatically solve the problem of poverty."

Leo described a "new tyranny," which shuns any kind of oversight and where the economy is structured "in such a way that sacrifices are demanded of the masses in order to serve the needs of the powerful." The poor, he wrote, are only allowed "drops that trickle down."

The pope openly challenged "prosperity theology" and called Christians to the practice of giving charity. "It will not solve the problem of world poverty, yet it must still be carried out, with intelligence, diligence and social responsibility," he wrote.

Popular movements that challenge "the empire of money," invite people to take on the cause to combat poverty alongside the poor, instead of on their behalf, and "make history," the pope said. It our duty, Leo said, to "make their voices heard, albeit in different ways, in order to point out and denounce such structural issues, even at the cost of appearing foolish or naïve."

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Ginger Billie @gingerbillie.bsky.social · 3d

The smell of fall in the morning.

🍁🍂☀️🌅
💛💛💛💛

I love this time of year.

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Reposted by Ginger Billie

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

“Over a 3-year follow-up, individuals with C19 infection had significantly higher risks of developing HPV-related cancers compared to those without:
67% increase cervical cancer
131% vaginal cancer
98% vulvar cancer
92% anal cancer
78% in oropharyngeal cancer.”

Still think it’s ’just a cold’?

Dr Noor Bari @njbbari3.bsky.social · 4d

pubmed.ncbi.nlm.nih.gov/40813533/ 🧐

SARS-CoV-2 infection heightens the risk of developing HPV-related carcinoma in situ and cancer - PubMed

SARS-CoV-2 infection is associated with elevated risks of HPV-related carcinoma in situ and cancer, irrespective of age or race. The findings underscore the importance of understanding the interplay b...

pubmed.ncbi.nlm.nih.gov

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Reposted by Ginger Billie

thetranscendedman @atranscendedman.bsky.social · 4d

One of the most beautiful things about this app is how it reminds me that illness doesn’t care who we are.

CEOs, singers, trainers, dreamers and all in the same fight, all reaching for understanding.

Thank you for believing in science, and in each other.

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Ginger Billie @gingerbillie.bsky.social · 4d

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

Ginger Billie @gingerbillie.bsky.social · 5d

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 · 4d

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 · 4d

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 · 5d

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 · 4d

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 · 4d

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 · 5d

...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 · 4d

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 · 5d

Headache and joint pain have entered the chat.

Ginger Billie @gingerbillie.bsky.social · 5d

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 · 5d

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 · 5d

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 · 5d

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 · 5d

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 · 5d

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

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