Alone LL
@ladylonghaul.bsky.social
Born 324 ppm. small spoons & sensory spaces. 🥄🎧
#ADHD #hEDS #LongCovid #MCAS #pwME #Migraine #POTS #PsoriaticArthritis #Tinnitus #Disability #Adoptee #Climate
ko-fi.com/ladylonghaul
LongCovidKids
Awareness Banner
5 years since Long Covid Changed Lives
#ADHD #hEDS #LongCovid #MCAS #pwME #Migraine #POTS #PsoriaticArthritis #Tinnitus #Disability #Adoptee #Climate
ko-fi.com/ladylonghaul
LongCovidKids
Awareness Banner
5 years since Long Covid Changed Lives
Pinned
Alone LL
@ladylonghaul.bsky.social
· May 2
May is ME Awareness Month❣️
Stay tuned for more info on #SOS 🛟 with @meactnet.bsky.social with more graphics to come❣️
#MillionsMissing #NEISVoid #pwME #StillSickStillFighting #SevereME #MEAction
bsky.app/profile/lady...
Stay tuned for more info on #SOS 🛟 with @meactnet.bsky.social with more graphics to come❣️
#MillionsMissing #NEISVoid #pwME #StillSickStillFighting #SevereME #MEAction
bsky.app/profile/lady...
Reposted by Alone LL
“When you have a disability people can’t see, you don’t get the same level of empathy. It feels like the world has moved on.”
It’s shameful how society is gaslighting people who are experiencing chronic illness and ignoring an ongoing public health crisis.
It’s shameful how society is gaslighting people who are experiencing chronic illness and ignoring an ongoing public health crisis.
Long Covid Is Real -- And It's Changing an Entire Generation
Long Covid is affecting hundreds of thousands of kids in America, and many doctors and schools refuse to recognize their illness.
www.rollingstone.com
October 16, 2025 at 7:48 PM
“When you have a disability people can’t see, you don’t get the same level of empathy. It feels like the world has moved on.”
It’s shameful how society is gaslighting people who are experiencing chronic illness and ignoring an ongoing public health crisis.
It’s shameful how society is gaslighting people who are experiencing chronic illness and ignoring an ongoing public health crisis.
Reposted by Alone LL
$475 - not the total needed by any means but it's the RN total for co-pays & medical transportation & that's URGENT!
Disabled. Chronically ill. Advocate when she can gather the energy. RN she doesn't have enough energy to even go get Novavax.
Pls RS/QS. Pls do what you can. #HelpFolksLive2025
Disabled. Chronically ill. Advocate when she can gather the energy. RN she doesn't have enough energy to even go get Novavax.
Pls RS/QS. Pls do what you can. #HelpFolksLive2025
Thank you so much for adding me here!
Have almost zero capacity today.
Too crashed to try to get Novavax today.
Raising for brain & neck MRIs, CTs, doctor copays, lab copays, Rx copays, ride shares, etc.
At 0 on goals except Novavax.
0/475 ASAP URGENT Medical + Travel goals
Anything helps! 🩵
Have almost zero capacity today.
Too crashed to try to get Novavax today.
Raising for brain & neck MRIs, CTs, doctor copays, lab copays, Rx copays, ride shares, etc.
At 0 on goals except Novavax.
0/475 ASAP URGENT Medical + Travel goals
Anything helps! 🩵
October 16, 2025 at 8:05 PM
$475 - not the total needed by any means but it's the RN total for co-pays & medical transportation & that's URGENT!
Disabled. Chronically ill. Advocate when she can gather the energy. RN she doesn't have enough energy to even go get Novavax.
Pls RS/QS. Pls do what you can. #HelpFolksLive2025
Disabled. Chronically ill. Advocate when she can gather the energy. RN she doesn't have enough energy to even go get Novavax.
Pls RS/QS. Pls do what you can. #HelpFolksLive2025
Reposted by Alone LL
People continue to call COVID advocates’ pleas for masking “unreasonable”.
Yet people who’ve already been disabled by COVID have no choice but to live with the “unreasonable” burdens of constant COVID safety.
My latest:
substack.com/home/post/p-...
Yet people who’ve already been disabled by COVID have no choice but to live with the “unreasonable” burdens of constant COVID safety.
My latest:
substack.com/home/post/p-...
Beyond all reason
Long COVID patients are constantly harangued about our requests for COVID safety. Yet what we're asking for is far less than what we're called on to do to survive.
substack.com
October 15, 2025 at 5:10 PM
People continue to call COVID advocates’ pleas for masking “unreasonable”.
Yet people who’ve already been disabled by COVID have no choice but to live with the “unreasonable” burdens of constant COVID safety.
My latest:
substack.com/home/post/p-...
Yet people who’ve already been disabled by COVID have no choice but to live with the “unreasonable” burdens of constant COVID safety.
My latest:
substack.com/home/post/p-...
Reposted by Alone LL
Worked hard on this, and I hope it will be a useful resource for many.
A beginner’s guide to Long COVID, with a discussion of mechanisms:
www.thegauntlet.news/p/what-is-lo...
A beginner’s guide to Long COVID, with a discussion of mechanisms:
www.thegauntlet.news/p/what-is-lo...
What is Long COVID?
A Beginner's Guide
www.thegauntlet.news
February 7, 2025 at 8:59 PM
Worked hard on this, and I hope it will be a useful resource for many.
A beginner’s guide to Long COVID, with a discussion of mechanisms:
www.thegauntlet.news/p/what-is-lo...
A beginner’s guide to Long COVID, with a discussion of mechanisms:
www.thegauntlet.news/p/what-is-lo...
Reposted by Alone LL
Just signed a letter to my reps telling them firing hundreds of people at #CDC is unacceptable.
If you're so moved, I hope you will too: actionnetwork.org/letters/writ...
#DoSomething
If you're so moved, I hope you will too: actionnetwork.org/letters/writ...
#DoSomething
Write to Congress: CDC Employees must be Reinstated
**Please write now to your Senators and Representative demanding that ALL CDC employees be reinstated as part of any agreement to reopen the government.** Late on Friday, October 10, the Trump Admin...
actionnetwork.org
October 14, 2025 at 3:14 PM
Just signed a letter to my reps telling them firing hundreds of people at #CDC is unacceptable.
If you're so moved, I hope you will too: actionnetwork.org/letters/writ...
#DoSomething
If you're so moved, I hope you will too: actionnetwork.org/letters/writ...
#DoSomething
Reposted by Alone LL
I don't want to talk to my phone. I don't want to talk to my laptop. I don't want to talk to my TV. I very definitely do not want to talk to my appliances. Hell, I don't even want all those things to have blinking lights (why must EVERYTHING have lights now).
October 16, 2025 at 7:53 PM
I don't want to talk to my phone. I don't want to talk to my laptop. I don't want to talk to my TV. I very definitely do not want to talk to my appliances. Hell, I don't even want all those things to have blinking lights (why must EVERYTHING have lights now).
Reposted by Alone LL
October. Months change. Survival needs don't (food/water/shelter/meds). Indigenous, Black, POC, 2SLGBTQNBIA, Disabled folks & small business folks who need some help to make it, drop your cash links, GFMs, your Ko-fis & Patreons & etsy shops here.
#HelpFolksLive2025
#HelpFolksLive2025
October 16, 2025 at 1:42 PM
October. Months change. Survival needs don't (food/water/shelter/meds). Indigenous, Black, POC, 2SLGBTQNBIA, Disabled folks & small business folks who need some help to make it, drop your cash links, GFMs, your Ko-fis & Patreons & etsy shops here.
#HelpFolksLive2025
#HelpFolksLive2025
Reposted by Alone LL
Thank you for this thread, bfitzinAR. Currently had to fo refund so the 2% of my goal is gone. Still aiming for the full amount ahead for bills, groceries, and etc. Trying to force myself awake to xyz...
ko-fi.com/diana_nightb...
ko-fi.com/diana_nightb...
Buy Diana Nightbloom a Coffee
Become a supporter of Diana Nightbloom today!
ko-fi.com
October 16, 2025 at 1:53 PM
Thank you for this thread, bfitzinAR. Currently had to fo refund so the 2% of my goal is gone. Still aiming for the full amount ahead for bills, groceries, and etc. Trying to force myself awake to xyz...
ko-fi.com/diana_nightb...
ko-fi.com/diana_nightb...
Reposted by Alone LL
Posting on behalf of @ladylonghaul.bsky.social
She has urgent medical fees (copays, transportation, etc) that need to be covered ASAP!
bsky.app/profile/fabf...
She has urgent medical fees (copays, transportation, etc) that need to be covered ASAP!
bsky.app/profile/fabf...
Current goal is 475
Follows are free💜
Donate as Friends & Family
DM @ladylonghaul.bsky.social for💰options
ko-fi.com/ladylonghaul
Alt Text: Support LadyLonghaul on Ko-fi
ID: red banner white text, white mug w/ red heart logo, pfp of blonde hair, brown eyed white woman in blue respirator
Follows are free💜
Donate as Friends & Family
DM @ladylonghaul.bsky.social for💰options
ko-fi.com/ladylonghaul
Alt Text: Support LadyLonghaul on Ko-fi
ID: red banner white text, white mug w/ red heart logo, pfp of blonde hair, brown eyed white woman in blue respirator
Buy LadyLonghaul a Coffee
Accepting tips and small donations for amusing snark or occasionally useful info dumps here. I also share my personal journey as an adoptee with no family medical history and emerging chronic and gene...
ko-fi.com
October 16, 2025 at 7:23 PM
Posting on behalf of @ladylonghaul.bsky.social
She has urgent medical fees (copays, transportation, etc) that need to be covered ASAP!
bsky.app/profile/fabf...
She has urgent medical fees (copays, transportation, etc) that need to be covered ASAP!
bsky.app/profile/fabf...
Reposted by Alone LL
October 16, 2025 at 2:30 PM
Reposted by Alone LL
October 16th. #HelpFolksLive2025 thread. Something's *always* due & food is *always* needed. Things only get better with community action. *Now* is when folks need food, water, shelter, meds. *Now* is when we/the community needs to be there for each other. There's no one else. Just us.
October 16, 2025 at 1:42 PM
October 16th. #HelpFolksLive2025 thread. Something's *always* due & food is *always* needed. Things only get better with community action. *Now* is when folks need food, water, shelter, meds. *Now* is when we/the community needs to be there for each other. There's no one else. Just us.
Reposted by Alone LL
August 15, 2025 at 5:05 PM
Reposted by Alone LL
ugh one of the worst people I know got the beautiful wood-bowled forest-green KitchenAid mixer for themselves and I hate them for it
August 14, 2025 at 11:51 AM
ugh one of the worst people I know got the beautiful wood-bowled forest-green KitchenAid mixer for themselves and I hate them for it
Reposted by Alone LL
Mamdani is running how I envisioned a hypothetical @dieworkwear.bsky.social political campaign. Straightforward and devastating to haters.
August 14, 2025 at 9:40 PM
Mamdani is running how I envisioned a hypothetical @dieworkwear.bsky.social political campaign. Straightforward and devastating to haters.
Reposted by Alone LL
ICYMI: Lina Khan wrote at @nytopinion.nytimes.com about our campaign's connection to small businesses and why we need to fight the concentrated economic power that too often suffocates them.
It's not just good for a thriving local economy — it's good politics too.
It's not just good for a thriving local economy — it's good politics too.
August 8, 2025 at 1:21 PM
ICYMI: Lina Khan wrote at @nytopinion.nytimes.com about our campaign's connection to small businesses and why we need to fight the concentrated economic power that too often suffocates them.
It's not just good for a thriving local economy — it's good politics too.
It's not just good for a thriving local economy — it's good politics too.
Reposted by Alone LL
In honor of #SevereMEDay, we’re launching #UnitedForME, a shared hashtag to amplify voices, art, and education from the Severe ME community.
Join @openmedf.bsky.social, @solveme.bsky.social, @meactnet.bsky.social & @batemanhornecenter.bsky.social in uplifting voices that need to be heard. 💙
Join @openmedf.bsky.social, @solveme.bsky.social, @meactnet.bsky.social & @batemanhornecenter.bsky.social in uplifting voices that need to be heard. 💙
August 7, 2025 at 1:08 PM
In honor of #SevereMEDay, we’re launching #UnitedForME, a shared hashtag to amplify voices, art, and education from the Severe ME community.
Join @openmedf.bsky.social, @solveme.bsky.social, @meactnet.bsky.social & @batemanhornecenter.bsky.social in uplifting voices that need to be heard. 💙
Join @openmedf.bsky.social, @solveme.bsky.social, @meactnet.bsky.social & @batemanhornecenter.bsky.social in uplifting voices that need to be heard. 💙
Reposted by Alone LL
#SevereMEDay Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical scandal
By Prof. Chris Ponting, University of Edinburgh
@cgatist.bsky.social @theconversation.com
#ME/CFS #pwME #GreatestMedicalScandal
By Prof. Chris Ponting, University of Edinburgh
@cgatist.bsky.social @theconversation.com
#ME/CFS #pwME #GreatestMedicalScandal
Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical scandal
The co-lead of the world’s largest ever genetic study into ME calls for a radical change in how society deals with the disease.
theconversation.com
August 8, 2025 at 8:09 PM
#SevereMEDay Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical scandal
By Prof. Chris Ponting, University of Edinburgh
@cgatist.bsky.social @theconversation.com
#ME/CFS #pwME #GreatestMedicalScandal
By Prof. Chris Ponting, University of Edinburgh
@cgatist.bsky.social @theconversation.com
#ME/CFS #pwME #GreatestMedicalScandal
Reposted by Alone LL
Science magazine’s coverage of the DecodeME initial results : www.science.org/content/arti...
Possible genetic clues to ME/chronic fatigue syndrome identified in massive study
DNA analysis of more than 15,500 people with the debilitating condition identifies eight tentative “genetic signals”
www.science.org
August 6, 2025 at 8:59 PM
Science magazine’s coverage of the DecodeME initial results : www.science.org/content/arti...
Reposted by Alone LL
Clip: Professor Chris Ponting tells BBC Scotland the world’s largest genetic study of #MECFS has identified eight genome regions linked to the disease. He says the field is finally being kickstarted after years of stigma and neglect.
August 7, 2025 at 8:53 AM
Clip: Professor Chris Ponting tells BBC Scotland the world’s largest genetic study of #MECFS has identified eight genome regions linked to the disease. He says the field is finally being kickstarted after years of stigma and neglect.
Reposted by Alone LL
August 8 is Severe ME Day. It recognizes the 25% of people with myalgic encephalomyelitis (ME) whom this neuroimmune disease has left so severely ill, we're home- or bedbound.
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1/
August 8, 2025 at 8:00 PM
August 8 is Severe ME Day. It recognizes the 25% of people with myalgic encephalomyelitis (ME) whom this neuroimmune disease has left so severely ill, we're home- or bedbound.
1/
1/
Reposted by Alone LL
Today, on Severe ME Awareness Day, @thesicktimes.org is proud to publish this piece by @naomiwhitt.bsky.social sharing the story of singer Kara Jane and her new album, released posthumously by her family. thesicktimes.org/2025/08/08/p...
Posthumous album of singer Kara Jane released on Severe ME Awareness Day - The Sick Times
This month, on August 8, the posthumous album of a young singer was released to mark Severe ME Awareness Day. Kara Jane, from Derbyshire in the U.K., had myalgic encephalomyelitis (ME) for most of her...
thesicktimes.org
August 8, 2025 at 2:20 PM
Today, on Severe ME Awareness Day, @thesicktimes.org is proud to publish this piece by @naomiwhitt.bsky.social sharing the story of singer Kara Jane and her new album, released posthumously by her family. thesicktimes.org/2025/08/08/p...
Reposted by Alone LL
To honor #SevereMEDay, each year, #MEAction asks for art submission; this year, over 100 submitted photos, videos, music and other art to #MEAction! A compilation can be found here:
www.youtube.com/watch?v=D-F_...
www.youtube.com/watch?v=D-F_...
Severe ME Artists Project 2025
YouTube video by The ME Action Network
www.youtube.com
August 9, 2025 at 2:13 AM
To honor #SevereMEDay, each year, #MEAction asks for art submission; this year, over 100 submitted photos, videos, music and other art to #MEAction! A compilation can be found here:
www.youtube.com/watch?v=D-F_...
www.youtube.com/watch?v=D-F_...