Long Covid Safety Net

Social Security Workers Are Being Told to Hand Over Appointment Details to ICE The recent request goes against decades of precedent, and puts noncitizens at further risk of immigration enforcement actions.

SCOOP: ICE is asking Social Security for peoples' in-person appointment dates and times, and SSA staff are being told to give it to them. From me + @leahfeiger.bsky.social + @zoeschiffer.bsky.social @wired.com

wired.com/story/social...

I can confirm this is true and I can also say that the lack of an eviction moratorium is fueling this trend.

Four more people w/ #MyalgicEncephalomyelitis died this past week and no one except other #pwME is discussing it b/c most don't know.

"Chronic Fatigue Syndrome" was a hideous misnomer from the start--crushing fatigue is one symptom out of 200--& the CDC failed miserably in coining the name in 1988

I’m working on a story for @thesicktimes.org about things people with Long Covid and other energy-limiting illnesses (as well as their caregivers) can do to protect themselves and their communities from ICE. I’d love to speak with any of the following:

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For a @motherjones.com article, I am looking to speak to caregivers of disabled individuals who are 14 and older who are on Medicaid re Medicaid work requirement exemptions. My email to reach out is jmetraux@motherjones.com and reposts are appreciated.

If you're a 55-64 year old who is retired due to health issues who is struggling to get SNAP work requirement exemptions, please get in touch for a @motherjones.com piece. My email is jmetraux@motherjones.com. I can potentially use first name only.

There is no safety net for Long Covid

My first piece for @thesicktimes.org!

In response to @brittashoot.com's reporting on LC/ME specialists opting out of insurance in order to “spend more time on patient care rather than administrative work,” I argue that administrative work IS patient care, especially for people living in poverty.

I believe @sndesireecha.bsky.social is spot-on in her critique of the covid-cautious community here. A huge percentage of these people (many of whom are white, and all of whom I presume are housed) are really only interested in masking etc. as a way to protect themselves and their nuclear families.

Please read this full thread, donate to Désirée's GFM if you can, and show up for your homeless neighbors.

This is another blatant instance of a disabled, covid-cautious POC being offered housing by white people and then violently abused and made homeless again. It has to stop.

gofund.me/6b8af16ac

Next Friday from @liberatorywellness.bsky.social and Mandatory Reporting Is Not Neutral:

www.eventbrite.com/e/mandatory-...

Always

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