Long Covid Safety Net

November 7, 2025 Dear Community Partner, As OTDA announced late this afternoon, New York State is completing the necessary steps to issue full November SNAP benefits to all eligible households. This is in response to a U.S. District Court ruling on November 6, 2025 directing the federal government to issue full November SNAP benefit payments to eligible households. OTDA expects to begin issuing November SNAP benefits this weekend and some New Yorkers could have access to their benefits as soon as Sunday, November 9. As we shared earlier this afternoon, on Monday, November 10th at 3:30 PM, DSS Commissioner Molly Wasow Park, HRA Administrator Scott French, and other agency leadership will hold a briefing call to discuss this and share other important information. Please register here if you have not already done so.

FYI for anyone in New York State who is affected by the SNAP situation, we got this notice just a couple hours ago.

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!

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.

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...

The state is starving people with very severe ME.

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

#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

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

Very important ⤵️

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

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

🍅🍅🍅

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.

Happening now:

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

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,

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.

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...

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”

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."

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

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.

@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.

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.

Know Your Rights: APS Edition

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

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

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...

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

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

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.

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?

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.

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...

Escalating Anti-Homeless Policies Fall Hardest on Disabled People in the US As legislative attacks on unhoused people ramp up, disabled people are on the front lines.

I've spent the past year trying to help my friends get housing and keep them out of nursing homes. @longcovidsafetynet.bsky.social is the labor of love and frustration that has come out of this struggle.

truthout.org/articles/esc...