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Alone LL @ladylonghaul.bsky.social · 2d

I hope so too! Thank you 🙏

Reposted by Alone LL

Dr. Lucky Tran @luckytran.com · 2d

“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.

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

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Reposted by Alone LL

bfitzinAR @bfitzinar.bsky.social · 2d

$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

Alone LL @ladylonghaul.bsky.social · 2d

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! 🩵

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Alone LL @ladylonghaul.bsky.social · 2d

Thank you so much for hosting these threads and for perceiving and communicating the urgency!! 🩵🩵🩵

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Reposted by Alone LL

Julia Doubleday @juliadoubleday.bsky.social · 3d

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-...

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

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Reposted by Alone LL

Julia Doubleday @juliadoubleday.bsky.social · Feb 7

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...

What is Long COVID?

A Beginner's Guide

www.thegauntlet.news

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Reposted by Alone LL

Rolling Stone @rollingstone.com.web.brid.gy · 2d

Long Covid Is Real — And It’s Changing an Entire Generation

Hundreds of thousands of kids in America are struggling with an illness that many doctors and schools refuse to recognize

www.rollingstone.com

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Reposted by Alone LL

It's ME(Jaime) @exceedhergrasp1.bsky.social · 4d

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

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

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Reposted by Alone LL

Alyssa Harad @alyssaharad.bsky.social · 2d

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).

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Reposted by Alone LL

bfitzinAR @bfitzinar.bsky.social · 2d

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

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Reposted by Alone LL

Diana Nightbloom @diananightbloom.bsky.social · 2d

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...

Buy Diana Nightbloom a Coffee

Become a supporter of Diana Nightbloom today!

ko-fi.com

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Reposted by Alone LL

FabForward 𓂆 @fabforward.bsky.social · 2d

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...

FabForward 𓂆 @fabforward.bsky.social · 2d

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

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

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Reposted by Alone LL

Josh 💛⚪💜♠️ @blackice397.bsky.social · 2d

bsky.app/profile/blac...

Josh 💛⚪💜♠️ @blackice397.bsky.social · 2d

Down to the last $60!

Can 6 people send $10 each to close this out? 💕💸

#BIPOCMA #MutualAid #MABoost #UrgentNeed

Josh 💛⚪💜♠️ @blackice397.bsky.social · 5d

So once again, the grocery goal for last week was not close at all to being cleared, and now I have to reset for this week. Goal of $150, any help is greatly appreciated. 💸💕

#BIPOCMA #SignalBoost #HelpSky #MutualAid #MABoost #UrgentNeed #HelpFolksLive2025

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Alone LL @ladylonghaul.bsky.social · 2d

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! 🩵

4 3

Reposted by Alone LL

bfitzinAR @bfitzinar.bsky.social · 2d

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.

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Alone LL @ladylonghaul.bsky.social · 2d

Thank you for posting for me! I’ve been away from here for a while!

Still limited in how much capacity I have to be present & respond.

Could definitely use some help, though!!

Running out of time!!

#HelpSky 💕💸 #SignalBoost #MARequest #HelpFolksLive2025

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Reposted by Alone LL

Zohran Kwame Mamdani @zohrankmamdani.bsky.social · Aug 15

I am once again asking you to knock on doors to win a city we can afford.

zohranfornyc.com/events

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Reposted by Alone LL

A Major Turbonerd @moist.dad · Aug 14

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

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Reposted by Alone LL

mcbzac @mcbzac.bsky.social · Aug 14

Mamdani is running how I envisioned a hypothetical @dieworkwear.bsky.social political campaign. Straightforward and devastating to haters.

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Alone LL @ladylonghaul.bsky.social · Aug 13

Chaotic good

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Reposted by Alone LL

Zohran Kwame Mamdani @zohrankmamdani.bsky.social · Aug 8

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.

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Reposted by Alone LL

Open Medicine Foundation (OMF) @openmedf.bsky.social · Aug 7

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. 💙

Simple graphic with logos from Bateman Horne Center, Solve ME/CFS Initiative, Open Medicine Foundation, and MEAction at the top. Text underneath reads: “Together, we’re amplifying Severe ME voices with one united hashtag: #UnitedForME.”

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Reposted by Alone LL

valebodi.bsky.social @valebodi.bsky.social · Aug 8

#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

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

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Reposted by Alone LL

Chris Ponting @cgatist.bsky.social · Aug 6

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

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Reposted by Alone LL

Adam @abrokenbattery.bsky.social · Aug 7

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.

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