kate
@bookhaven.bsky.social
Neurodivergent library ghost 👻
Napping instead of making lemonade 😴
♿🦓🛏️ 😷 📚🚀
🪫 Often limited capacity
Don't share my posts on other platforms without asking.
Header: Will Santino 🍋🥛
PFP: Pies Are Awesome 🥧
Napping instead of making lemonade 😴
♿🦓🛏️ 😷 📚🚀
🪫 Often limited capacity
Don't share my posts on other platforms without asking.
Header: Will Santino 🍋🥛
PFP: Pies Are Awesome 🥧
Reposted by kate
Exoskeletons! Bionic leg braces! The wrong trousers!
Most of us do not want these things. The loss of being bipedal isn’t what grieves us.
It’s the fact that abled people just cannot help themselves making exclusionary decisions that DON’T NEED TO BE. Everyone benefits from ramps.
Most of us do not want these things. The loss of being bipedal isn’t what grieves us.
It’s the fact that abled people just cannot help themselves making exclusionary decisions that DON’T NEED TO BE. Everyone benefits from ramps.
February 14, 2026 at 1:18 PM
Exoskeletons! Bionic leg braces! The wrong trousers!
Most of us do not want these things. The loss of being bipedal isn’t what grieves us.
It’s the fact that abled people just cannot help themselves making exclusionary decisions that DON’T NEED TO BE. Everyone benefits from ramps.
Most of us do not want these things. The loss of being bipedal isn’t what grieves us.
It’s the fact that abled people just cannot help themselves making exclusionary decisions that DON’T NEED TO BE. Everyone benefits from ramps.
Reposted by kate
Did you eat? Take your meds? Drink water? Remind someone you love them?
February 14, 2026 at 4:53 AM
Did you eat? Take your meds? Drink water? Remind someone you love them?
#MECFS
"My unplanned career pivot taught me that the most impactful organizations often emerge from solving problems others ignore. As I navigated the healthcare system, I discovered a patient population abandoned despite representing a larger market than multiple sclerosis and Parkinson's combined"
"My unplanned career pivot taught me that the most impactful organizations often emerge from solving problems others ignore. As I navigated the healthcare system, I discovered a patient population abandoned despite representing a larger market than multiple sclerosis and Parkinson's combined"
In Her Own Words: Elizabeth Ansell documents economic impact of chronic fatigue syndrome - The Business Journals
Elizabeth Ansell transformed her chronic fatigue syndrome diagnosis into advocacy that secured congressional recognition and NIH funding for the overlooked disease.
www.bizjournals.com
February 13, 2026 at 6:05 PM
#MECFS
"My unplanned career pivot taught me that the most impactful organizations often emerge from solving problems others ignore. As I navigated the healthcare system, I discovered a patient population abandoned despite representing a larger market than multiple sclerosis and Parkinson's combined"
"My unplanned career pivot taught me that the most impactful organizations often emerge from solving problems others ignore. As I navigated the healthcare system, I discovered a patient population abandoned despite representing a larger market than multiple sclerosis and Parkinson's combined"
Reposted by kate
Statements like below in this pre-print lead straight back to graded exercise bc few providers understand their pts level of function or trust when pts say they can’t exert more than they are. Which leads providers to feel their pts are difficult or non-compliant, further eroding care.
February 11, 2026 at 4:33 PM
Statements like below in this pre-print lead straight back to graded exercise bc few providers understand their pts level of function or trust when pts say they can’t exert more than they are. Which leads providers to feel their pts are difficult or non-compliant, further eroding care.
Reposted by kate
Putrino’s own clinical guidance treats PESE and PEM as equivalent which is a huge problem and leads exactly here.
Statements like below in this pre-print lead straight back to graded exercise bc few providers understand their pts level of function or trust when pts say they can’t exert more than they are. Which leads providers to feel their pts are difficult or non-compliant, further eroding care.
February 11, 2026 at 4:59 PM
Putrino’s own clinical guidance treats PESE and PEM as equivalent which is a huge problem and leads exactly here.
Reposted by kate
This is dangerously disrespectful of what we know about the PEM disease process as well as how motivated & socialized patients are to push ourselves. When we say this advice is dangerous, THAT’S KNOWLEDGE WE LEARNED IN THE MOST DEVASTATING WAY POSSIBLE. PLEASE DON’T DO THIS TO ANYONE ELSE 😩
Statements like below in this pre-print lead straight back to graded exercise bc few providers understand their pts level of function or trust when pts say they can’t exert more than they are. Which leads providers to feel their pts are difficult or non-compliant, further eroding care.
February 13, 2026 at 1:51 PM
This is dangerously disrespectful of what we know about the PEM disease process as well as how motivated & socialized patients are to push ourselves. When we say this advice is dangerous, THAT’S KNOWLEDGE WE LEARNED IN THE MOST DEVASTATING WAY POSSIBLE. PLEASE DON’T DO THIS TO ANYONE ELSE 😩
Reposted by kate
We don’t need to be encouraged to rearrange how we spend our finite capacity in ways that steal from our function & make us sicker. We don’t need to be advised on how to rearrange deck chairs on the titanic. What we need is real research & real treatments, so we can have real capacity increases.
February 13, 2026 at 1:51 PM
We don’t need to be encouraged to rearrange how we spend our finite capacity in ways that steal from our function & make us sicker. We don’t need to be advised on how to rearrange deck chairs on the titanic. What we need is real research & real treatments, so we can have real capacity increases.
Reposted by kate
I'm just a girl, standing in front of the entire medical establishment, begging them to stop being a bucket of gaslighting fake PVC body-unsafe jelly dicks and actually listen to the patient in front of them and not the patient in their mind
February 11, 2026 at 10:47 PM
I'm just a girl, standing in front of the entire medical establishment, begging them to stop being a bucket of gaslighting fake PVC body-unsafe jelly dicks and actually listen to the patient in front of them and not the patient in their mind
Reposted by kate
Isabella Wranå won gold for curling, but should've for this video
February 11, 2026 at 1:09 AM
Isabella Wranå won gold for curling, but should've for this video
Reposted by kate
Article has links to call your officials if you live in Indiana
The latest budget update from the state of Indiana would cut funds for Dolly Parton's Imagination Library, which sends free books to kids birth-5. Here's what that means, what to do, and why this is about KIDS, not Dolly.
bookriot.com/indiana-cuts...
bookriot.com/indiana-cuts...
Indiana Cuts Dolly Parton Imagination Library from Budget
The latest budget update from the state of Indiana would cut funds for Dolly Parton's Imagination Library, which sends free books to kids birth-5.
bookriot.com
February 19, 2025 at 4:06 PM
Article has links to call your officials if you live in Indiana
Reposted by kate
I feel like I need to print this out and highlight and annotate it.
It doesn’t HELP me by giving me treatment avenues but even given I’m not a scientist so much of this makes SENSE to me. Like, it intuitively feels like “yes! This is what’s going on my body!” I could absolutely be wrong ofc
It doesn’t HELP me by giving me treatment avenues but even given I’m not a scientist so much of this makes SENSE to me. Like, it intuitively feels like “yes! This is what’s going on my body!” I could absolutely be wrong ofc
This article is very interesting to me for a lot of reasons -/ but someone who knows more about this than I do: “of an insufficient Na+/K+-ATPase-activity, but sodium influx is also strongly increased by complex perfusion disturbances in PAIS,
www.frontiersin.org/journals/phy...
www.frontiersin.org/journals/phy...
Frontiers | The potential causes of myasthenia and fasciculations in severely ill ME/CFS patients: the role of disturbed electrophysiology
Patients with severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are bedridden and suffer from hypersensitivities to light and noise, severe ...
www.frontiersin.org
February 12, 2026 at 8:50 PM
I feel like I need to print this out and highlight and annotate it.
It doesn’t HELP me by giving me treatment avenues but even given I’m not a scientist so much of this makes SENSE to me. Like, it intuitively feels like “yes! This is what’s going on my body!” I could absolutely be wrong ofc
It doesn’t HELP me by giving me treatment avenues but even given I’m not a scientist so much of this makes SENSE to me. Like, it intuitively feels like “yes! This is what’s going on my body!” I could absolutely be wrong ofc
Reposted by kate
Join us for a free webinar! The Sick Times editors @mileswgriffis.bsky.social and @betsyladyzhets.bsky.social — plus special guest speakers — will demystify the process of writing and pitching op-eds and essays on Long COVID. Register now: us06web.zoom.us/meeting/regi...
February 9, 2026 at 9:14 PM
Join us for a free webinar! The Sick Times editors @mileswgriffis.bsky.social and @betsyladyzhets.bsky.social — plus special guest speakers — will demystify the process of writing and pitching op-eds and essays on Long COVID. Register now: us06web.zoom.us/meeting/regi...
Reposted by kate
Anyone on my network familiar with social supports in Canada, specifically in Edmonton, where a disabled autistic guy might turn for help? He’s about to lose housing and internet access. He’s brilliant but physically hurt, and he’s about to be on the street in this winter.
February 8, 2026 at 2:41 AM
Anyone on my network familiar with social supports in Canada, specifically in Edmonton, where a disabled autistic guy might turn for help? He’s about to lose housing and internet access. He’s brilliant but physically hurt, and he’s about to be on the street in this winter.
Reposted by kate
other "alerts" that can affect how/if the liver sends energy to the brain include:
- signals from the gut microbiome (inflammatory signals cause problems; "good bacteria" digesting fiber send "alerts" that help)
- immune signals (chronic inflammation can cause problems)
- signals from the gut microbiome (inflammatory signals cause problems; "good bacteria" digesting fiber send "alerts" that help)
- immune signals (chronic inflammation can cause problems)
February 8, 2026 at 2:53 PM
other "alerts" that can affect how/if the liver sends energy to the brain include:
- signals from the gut microbiome (inflammatory signals cause problems; "good bacteria" digesting fiber send "alerts" that help)
- immune signals (chronic inflammation can cause problems)
- signals from the gut microbiome (inflammatory signals cause problems; "good bacteria" digesting fiber send "alerts" that help)
- immune signals (chronic inflammation can cause problems)
Reposted by kate
however, there's a lot of other "alerts" that can also tell the liver it's time to actually use send the "battery backup" to the brain
if these alerts go haywire or get "dysregulated," that can also mess with the liver-brain backup battery system
if these alerts go haywire or get "dysregulated," that can also mess with the liver-brain backup battery system
February 8, 2026 at 2:48 PM
however, there's a lot of other "alerts" that can also tell the liver it's time to actually use send the "battery backup" to the brain
if these alerts go haywire or get "dysregulated," that can also mess with the liver-brain backup battery system
if these alerts go haywire or get "dysregulated," that can also mess with the liver-brain backup battery system
Reposted by kate
Go submit your testimony to the House right now! And again (or if you miss today’s House deadline) to the Senate on Tuesday! You don’t need to live in Maryland—the idea is to show this is a global problem/global market. Here’s how to submit:
docs.google.com/document/d/1...
docs.google.com/document/d/1...
February 6, 2026 at 7:32 PM
Go submit your testimony to the House right now! And again (or if you miss today’s House deadline) to the Senate on Tuesday! You don’t need to live in Maryland—the idea is to show this is a global problem/global market. Here’s how to submit:
docs.google.com/document/d/1...
docs.google.com/document/d/1...
Reposted by kate
This need has become quite acute quickly, and I'm rapidly deteriorating. I'm worried about losing the progress I've made over the past few months.
I know there's a lot of need right now, but if I were to start a gofundme or something to hire some help, is that something people might contribute to?
I know there's a lot of need right now, but if I were to start a gofundme or something to hire some help, is that something people might contribute to?
Hey folks, if you read my recent blog post, you may be surprised to hear this but unfortunately my main source of support has abruptly ended today and I am scrambling to figure out how to replace both boring support (like help with dishes) and emergency support (when I have serious MCAS attacks).
Genuine q for other folks with MCAS:
(please note if you do not have MCAS and reply unhelpfully to this, I will block you for wasting all of our time)
If you regularly wake up to anaphylactoid crises in the middle of the night, what is your support strategy? Do you live w/ someone you can wake up?
(please note if you do not have MCAS and reply unhelpfully to this, I will block you for wasting all of our time)
If you regularly wake up to anaphylactoid crises in the middle of the night, what is your support strategy? Do you live w/ someone you can wake up?
February 5, 2026 at 7:27 PM
This need has become quite acute quickly, and I'm rapidly deteriorating. I'm worried about losing the progress I've made over the past few months.
I know there's a lot of need right now, but if I were to start a gofundme or something to hire some help, is that something people might contribute to?
I know there's a lot of need right now, but if I were to start a gofundme or something to hire some help, is that something people might contribute to?
Reposted by kate
me, librarian: I think information should be organized and structured logically so that searches are high in precision and recall
tech industry, 2000: nope, keyword searching and opaque relevance rankings are what you’ll get
…
tech industry, 2026: now you’ll just get fake hallucinatory text
tech industry, 2000: nope, keyword searching and opaque relevance rankings are what you’ll get
…
tech industry, 2026: now you’ll just get fake hallucinatory text
February 6, 2026 at 4:57 PM
me, librarian: I think information should be organized and structured logically so that searches are high in precision and recall
tech industry, 2000: nope, keyword searching and opaque relevance rankings are what you’ll get
…
tech industry, 2026: now you’ll just get fake hallucinatory text
tech industry, 2000: nope, keyword searching and opaque relevance rankings are what you’ll get
…
tech industry, 2026: now you’ll just get fake hallucinatory text
#MECFS and rest research survey*
- includes a low energy version
- allows self ID MECFS
- includes medical providers
*I have no affiliation or gain. Just sharing a random find
www.restandmecfs.com
- includes a low energy version
- allows self ID MECFS
- includes medical providers
*I have no affiliation or gain. Just sharing a random find
www.restandmecfs.com
Rest and ME/CFS
www.restandmecfs.com
February 6, 2026 at 5:31 PM
#MECFS and rest research survey*
- includes a low energy version
- allows self ID MECFS
- includes medical providers
*I have no affiliation or gain. Just sharing a random find
www.restandmecfs.com
- includes a low energy version
- allows self ID MECFS
- includes medical providers
*I have no affiliation or gain. Just sharing a random find
www.restandmecfs.com
Reposted by kate
“Winter may be beautiful, but bed is much better.”
January 29, 2026 at 11:37 AM
“Winter may be beautiful, but bed is much better.”
Reposted by kate
The Insta post has 7 slides that summarize the study but it doesn't link to the study itself so I grabbed a free study link:
LED lighting (350-650nm) undermines human visual performance unless supplemented by wider spectra (400-1500nm+) like daylight - PMC share.google/OLosvASkU58v...
LED lighting (350-650nm) undermines human visual performance unless supplemented by wider spectra (400-1500nm+) like daylight - PMC share.google/OLosvASkU58v...
LED lighting (350-650nm) undermines human visual performance unless supplemented by wider spectra (400-1500nm+) like daylight
Life evolved under broad spectrum sunlight, from ultraviolet to infrared (300–2500 nm). This spectrally balanced light sculpted life’s physiology and metabolism. But modern lighting has recently become dominated by restricted spectrum light emitting ...
share.google
January 29, 2026 at 1:02 AM
The Insta post has 7 slides that summarize the study but it doesn't link to the study itself so I grabbed a free study link:
LED lighting (350-650nm) undermines human visual performance unless supplemented by wider spectra (400-1500nm+) like daylight - PMC share.google/OLosvASkU58v...
LED lighting (350-650nm) undermines human visual performance unless supplemented by wider spectra (400-1500nm+) like daylight - PMC share.google/OLosvASkU58v...
Reposted by kate
I KNEW IT. WE WERE RIGHT TO HATE LEDS
January 29, 2026 at 1:02 AM
I KNEW IT. WE WERE RIGHT TO HATE LEDS