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Reposted by Long Covid Safety Net

Sara Luterman @slooterman.bsky.social · 1d

Reupping this — I’m still looking for folks to talk to!

Sara Luterman @slooterman.bsky.social · 2d

Are rising prices and inflation eating into your or a loved one’s Social Security payments? Want to talk about it with a reporter for a news article? DM or email sluterman at 19thnews dot org.

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Long Covid Safety Net @longcovidsafetynet.bsky.social · 21h

On that note, Dysautonomia International's media guide doesn't actually include any demands or recommendations, which is a pretty essential element of "how to talk to the press 101." Awareness in itself is not a sufficient outcome!

Long Covid Safety Net @longcovidsafetynet.bsky.social · 21h

This is an important talking point and provides the media hook of "why is this relevant now?"--because an ongoing current event is dramatically affecting prevalence. It also connects directly to an advocacy demand, which is that we need more research funding for Long Covid as well as dysautonomia.

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Long Covid Safety Net @longcovidsafetynet.bsky.social · 21h

Deeply frustrated to see that this guide from @dysautonomia.bsky.social on how to speak to the press doesn't include any mention of Long Covid or the fact that Covid has drastically increased the percentage of children and adults with POTS.

www.dysautonomiainternational.org/pdf/MediaGui...

www.dysautonomiainternational.org

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Long Covid Safety Net @longcovidsafetynet.bsky.social · 6d

The state is starving people with very severe ME.

ME Centraal @mecentraal.bsky.social · 6d

www-omroephorstaandemaas-nl.translate.goog/actueel/uitg...

To our great regret, we must inform you that Sanne has lost the lawsuit filed against three hospitals and will not receive parenteral nutrition... 💔

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The Sick Times @thesicktimes.org · 12d

#LongCOVID is not functional neurological disorder (FND), but some patients are getting diagnosed with it.

Here’s @davetuller1.bsky.social on what to do if it happens to you: bit.ly/4mxAyiB

Photo of an art piece: a white object, shaped like an egg, with painted representations of the virus SARS-CoV-2 across its surface. The text reads, "The Sick Times. Long COVID is not FND, but some patients are getting diagnosed with it. Here’s what to do if it happens to you. By David Tuller."

What people with Long COVID should do if they receive an FND diagnosis:

Ask about the basis for the diagnosis. A clinician may render an FND diagnosis when medical tests are negative. That means people with Long COVID and other conditions that lack validated biomarkers might be particularly vulnerable to misdiagnosis. However, FND is not supposed to be a diagnosis of exclusion — that is, a diagnosis given solely because nothing else has been found.

Don’t automatically accept the diagnosis as final. “Don’t be afraid to question it if it doesn’t feel like the diagnosis fits your symptoms,” said Hargrave. Davenport echoed that advice. “Don’t take it for a definitive answer,” he said. “It’s okay to seek another opinion.”

What people with Long COVID should do if they receive an FND diagnosis

Keep a full account of your medical care, said Joffe, the Australian expert. “Carefully document all neurological interactions,” he said. “Keep copies of the letters written and all the results. That’s crucial. Not infrequently, I find that something has been missed or overlooked in my patients. Having the original letters and studies is very illuminating.”

Be aware that having an existing FND diagnosis in medical charts might influence the judgment of subsequent clinicians, and take steps to address this issue. David Putrino recommends working with your primary care provider “to have that diagnosis removed from your medical records.”

"Don’t be afraid to question it if it doesn’t feel like the diagnosis fits your symptoms. Don’t take it for a definitive answer. It’s okay to seek another opinion." - Todd Davenport, Professor of physical therapy at the University of the Pacific in Stockton, California

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Long Covid Safety Net @longcovidsafetynet.bsky.social · 15d

Laura Weiss @lauralew105.bsky.social is a trusted reporter who has written about Long Covid since 2020

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Long Covid Safety Net @longcovidsafetynet.bsky.social · 15d

Very important ⤵️

The Sick Times @thesicktimes.org · 15d

Reporter Laura Weiss (@lauralew105.bsky.social) is looking to speak with people with #LongCOVID who are on Medicaid and concerned about losing benefits due to work requirements or otherwise due to Trump's spending bill. Contact her at (lauraweisswrites at gmail dot com).

Black text on a purple background reads, "For an upcoming story: Reporter Laura Weiss is looking to speak with people with Long COVID who are on Medicaid and concerned about losing benefits due to work requirements or otherwise due to Trump's spending bill.

Contact her: lauraweisswrites@gmail.com"

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Reposted by Long Covid Safety Net

The Sick Times @thesicktimes.org · 28d

The two-day RECOVER-TLC workshop on new #LongCOVID clinical trials has concluded. You can read our live-blog of every session from the workshop at The Sick Times: bit.ly/4giPmAi

A group of masked advocates with Long COVID who attended the RECOVER-TLC workshop on new Long COVID clinical trials

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Long Covid Safety Net @longcovidsafetynet.bsky.social · Aug 29

🍅🍅🍅

THE CITY @thecity.nyc · Aug 29

Mayor Eric Adams’ administration has moved ahead with a controversial rule change that will increase the share working families with housing vouchers will have to pay in rent.

Rent Hike for Some Voucher Tenants Starts, Spurred by Mayor Adams

The increase will require thousands of families who use the CityFHEPS voucher to pay 40% of their income if they renew the rental subsidy after five years.

buff.ly

Long Covid Safety Net @longcovidsafetynet.bsky.social · Aug 29

Not. Homeless. Enough.

The Coordinated Entry system turned this family away--possibly because they failed to score high enough on a "points" system. They have been living in 7-year-old Samara's hospital room.

Harms Committed @harmscommitted.com · Aug 29

7-year-old Samara "has endured three major spinal surgeries. The last one required implants and a halo crown."

San Francisco "has denied her family permanent supportive housing multiple times."

Support their GoFundMe: www.gofundme.com/f/help-maria...
#California #USA #Policing #Healthcare #Housing

Homeless mother fights to get disabled daughter into SF housing

Her 7-year-old daughter is recovering in a hospital, but San Francisco says the family is not “homeless enough” for housing help.

eltecolote.org

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Long Covid Safety Net @longcovidsafetynet.bsky.social · Aug 26

Happening now:

nylag-org.zoom.us/w/8970324024...

Reposted by Long Covid Safety Net

Sheryl Weikal and the colorful Parrotlegals @leftistlawyer.com · Aug 22

I am literally begging anyone who does any kind of journalism to spend an hour in an eviction courtroom every week for a month. Please.

The eviction crisis in this country is downplayed at best and ignored at worst. It's racialized state violence that hearkens back to the worst of Jim Crow,

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Long Covid Safety Net @longcovidsafetynet.bsky.social · Aug 20

NYLAG's Evelyn Frank Legal Resources Program is hosting a webinar on the upcoming changes to NY home care eligibility. Highly recommend if you anticipate needing to navigate this system. nylag-org.zoom.us/webinar/regi...

Text reads:

New ADL Eligibility Criteria for Medicaid Home Care Beginning September 1, 2025

Medicaid home care applicants assessed by the New York Independent Assessor (NYIAP) will face stricter requirements to qualify for:
[bullet] Managed Long Term Care (MLTC)
[bullet] Medicaid Advantage Plus (MAP)
[bullet] Personal Care or CDPAP services through local Department of Social Services (HRA in NYC) or mainstream Medicaid managed care plans

Under the new law, the NYIAP nurse assessor must find that the applicant requires “limited assistance with physical maneuvering” in at least three Activities of Daily Living (ADLs). An exception applies to individuals diagnosed with Alzheimer’s disease or dementia, who may qualify with “supervisory or cueing assistance” in two ADLs, if certified by a physician using the new DOH-5821 form.

Those already receiving services will not be subject to the new criteria and retain “legacy status.” Applicants who were assessed by NYIAP between Sept. 1, 2024, and Aug. 31, 2025, will also retain “legacy status” and are not subject to the new criteria, provided they begin services or enroll in a plan within one year of their assessment.

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SN Désirée Cha @sndesireecha.bsky.social · Aug 1

unhoused people don’t fear there is nowhere to go. they KNOW there is nowhere to go: no safe shelters, no social safety net. being poor, homeless, disabled, medically vulnerable are all increasingly becoming criminalized and structurally treated as disposable, not human, “not our problem”

Mississippi Free Press @mississippifreepress.org · Aug 1

Mississippi's new laws targeting homeless people include:

-House Bill 1203, which prohibits camping on public property not designated for shelter, punishable by a fine up to $50.

-House Bill 1197, requiring people who solicit donations to obtain a permit that could cost up to $25 per day.

Unhoused Mississippians Fear ‘Nowhere to Go’ Under New Laws

Two state laws targeting the homeless population that went into effect July 1 are raising concerns across Mississippi.

buff.ly

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Long COVID Justice @longcovidjustice.org · Aug 8

Today is Severe ME Awareness Day, and we’re sharing our explainer about Severe ME.

Highlights in thread, and check out the full resource at longcovidjustice.org/severe-me

This is part of the Long COVID Essentials series by @longcovidjustice.org + @thesicktimes.bsky.social

A purple and teal ombre image has blue and black text that says: “Dealing with Severe ME after COVID-19?

tips for living with severe myalgic encephalomyelitis (ME), including:
• understanding common symptoms
• tips for managing your energy
• finding care & support
• resources for patients and doctors

The footer reads, "Long COVID Essentials, www.tiny.cc/LCE. A series by The Sick Times x Long COVID Justice."

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vee.soy @vashetc.bsky.social · Aug 8

This day is always extremely difficult every year. It’s Severe ME day. This disease has been the most difficult thing I’ve ever had to face in my life, and I’ve faced a lot.

We remain one of the least funded diseases by disease burden, if not the least.

Having a severe form of ME is horrifying.

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Reposted by Long Covid Safety Net

sarah boothby @swastrosarah.bsky.social · Jul 31

@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.

sarah boothby @swastrosarah.bsky.social · Jul 31

Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights

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Reposted by Long Covid Safety Net

Julia Métraux @juliametraux.bsky.social · Jul 28

Low income people of color are more likely to get Long Covid. Yet, it's mostly white people w/ Long Covid whose accounts tend to blow up more.

Billy Hanlon @bhanlon15.bsky.social · Jul 28

American College of Physicians: "Study finds economically disadvantaged patients at greater risk for long COVID"

'Researchers from Brigham and Women's Hospital, Harvard Medical School, and colleagues studied data from 3,787 adults enrolled in the RECOVER study...'

medicalxpress.com/news/2025-07...

Study finds economically disadvantaged patients at greater risk for long COVID

A prospective observational cohort study determined the associations between social determinants of health (SDoH) at the time of SARS-CoV-2 infection and subsequent risk for long COVID. The study foun...

medicalxpress.com

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Long Covid Safety Net @longcovidsafetynet.bsky.social · Jul 27

Know Your Rights: APS Edition

vee.soy @vashetc.bsky.social · Jul 27

for anyone keeping updated with my story
CW: APS investigation

I am privileged to have a phd & knowledge of social work. & So, I've been researching since the unannounced visit. I also called APS asking about my rights. I knew it'd be futile, but wanted on record their refusal to provide KYR. 🧵

vee.soy @vashetc.bsky.social · Jul 22

I’ve finally stopped shaking like a leaf. Surveillance is never the answer to systemic failures. Even though I do this work for a living & have called for the abolition of investigative social workers for years, I’m deeply traumatized. I’ll be offline for while to game plan for the next APS visit.

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Mirandaaaaa 👻 @crookedneighbor.bsky.social · Jul 10

Federal government is shutting down the program that helps homeless people with SSI/SSDI applications @mariannedhe.bsky.social @marisakabas.bsky.social @economichardship.bsky.social

To our SOAR Community,

We are deeply saddened to share that due to a change in policy priorities, SAMHSA has discontinued funding for the SAMHSA SOAR TA Center.

After August 18, the SOARWorks website, SOAR Online Courses, and the SOAR Online Application Tracking (OAT) system will no longer be available. Technical assistance and training previously provided by staff at Policy Research Associates, Inc. (PRA) (operators of the SAMHSA SOAR TA Center) will no longer be available.

We have highlighted some next steps below and encourage you to visit SOAR Close Out FAQs for additional information and guidance.

Keep SOARing,

Your SOAR TA Center Team at PRA

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City Limits News @citylimitsnews.bsky.social · Jul 11

ICYMI: @council.nyc.gov scored a legal win yesterday when an appeals court ruled the city must implement its package of laws to expand eligibility for CityFHEPS rental vouchers. The mayor's office said it's now weighing its next steps. bit.ly/3GgPAdK

Mayor Must Implement Council Laws Expanding Rental Vouchers, Appeals Court Rules - City Limits

City Hall has so far refused to carry out the package of bills passed by the Council in 2023, which would expand CityFHEPS eligibility to any income eligible household at risk of eviction, among other...

bit.ly

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Long Covid Safety Net @longcovidsafetynet.bsky.social · Jul 11

She's basically arguing that instead of issuing more vouchers, NYC needs to focus on building "affordable housing" so that people who already have vouchers can use them.

CityFHEPS will pay up to $2762 for a 1-bedroom. Hot take? The problem is source-of-income discrimination, not lack of apartments.

Table listing maximum rent amounts by family size and number of bedrooms. For 1 person in an SRO, CityFHEPS will pay $1,985. For 1 person in a studio, it will pay $2,646. For 1-2 people in a one-bedroom, it will pay $2,762. Table goes up to a family of 20 in a 10-bedroom apartment. Click here for an accessible version of the complete table: https://www.nyc.gov/assets/hra/downloads/pdf/cityfheps-documents/DSS-8r-%28E%29.pdf

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Long Covid Safety Net @longcovidsafetynet.bsky.social · Jul 11

Eric Adams has blocked the expansion of CityFHEPS at every step of the way. His press secretary says, "Adding more vouchers will only make it harder for people to leave homeless shelters." Huh?

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Long Covid Safety Net @longcovidsafetynet.bsky.social · Jul 11

Previously, you could only access the CityFHEPS voucher if you were already in a homeless shelter--but shelters are inaccessible and will turn you away if you're too disabled, making it impossible to get the voucher.

Now that has to change. It's a humongous win.

gothamist.com/news/adams-a...

Adams administration must expand city-funded rental subsidies, appeals court says

The decision reverses a lower-court ruling, requiring New York City to implement a package of laws to expand rental vouchers.

gothamist.com

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