betsy ladyzhets 😷

@betsyladyzhets

editor/co-founder @thesicktimes.org | journalist covering Long COVID & related crises | she/her/🏳️‍🌈 email: betsy@thesicktimes.org | signal: betsyladyzhets.25

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betsy ladyzhets 😷@betsyladyzhets· 26d

NIAID's Seema Nayak is now presenting some background info about how clinical trials are designed. For RECOVER-TLC, all trial protocols have included input from patient and community reps, NIAID, Long COVID clinicians, clinical trialists, protocol-specific experts, and clinical sites.

RECOVER-TLC slide showing a diagram with the different stakeholders involved in protocol development. This includes NIAID and clinical trials core, Long COVID clinicians, clinical sites, protocol-specific subject matter experts, clinical trialists, patient and community representatives.

betsy ladyzhets 😷@betsyladyzhets· 26d

TLC staff emphasized that RECOVER-TLC is still taking new submissions for Long COVID treatments that people would like to see studied. The TLC portal has gotten over 600 submissions as of July. Breen noted that TLC may add additional trials to the existing four.

RECOVER-TLC slide showing potential Long COVID therapies that have been submitted to the initiative's portal. 394 people have submitted 625 total treatments. The majority are drug options, followed by nutrition and diet therapies, devices, manual and physical therapies, and complementary and integrative health therapies.

betsy ladyzhets 😷@betsyladyzhets· 26d

Current status of the TLC trials: - REVERSE-LC (baricitinib): 17 sites, 279 participants enrolled as of July 9 - BRAVE-LC (low-dose naltrexone): protocol is done, investigational new drug application (for specific LDN product used in the study) will be submitted to the FDA in August

Screenshot of RECOVER-TLC slide showing progress of the four clinical trials. REVERSE-LC is recruiting (with protocols done already prior to this study joining the TLC initiative) while the other three studies, GLP-1, LDN, and SGB, are all in protocol development.

betsy ladyzhets 😷@betsyladyzhets· 28d

this is who proofreads @thesicktimes.org fundraising emails BTW

Selfie of Betsy and Jacko. Jacko is a small dog with a pink collar, looking sideways from the camera.

Another selfie of Betsy and Jacko. Jacko is mid-shake, his snout pointed up toward Betsy.

betsy ladyzhets 😷@betsyladyzhets· 28d

This moment in the Q&A at the RECOVER webinar happening right now (covering first-wave clinical trial results) really made me chuckle. RECOVER-ENERGIZE is the poster child for researchers conflating exercise intolerance and PEM...

Screenshot of a question and answer from a Zoom Q&A. A participant named Brian asked: "I have to believe most long-time Long COVID sufferers like myself (going on 6 years) listening in are wondering why there has been little to no specific reference during this program to treatments for PEM, which it’s my understanding is by far the most highly reported symptom of Long COVID sufferers?"
Craig Reist answers: "Hi Brian, RECOVER-ENERGIZE specifically focused on PEM. Those results should be available later this fall"

betsy ladyzhets 😷@betsyladyzhets· Jun 11

A friend of mine in NYC with very severe ME/Long COVID urgently needs funds to support his care. His care team also could use more COVID realist volunteers. (note: sharing in my personal capacity, not affiliated with The Sick Times!)

Flyer with text reading: "Urgent mutual aid call: $8k needed by 6/21. OUr transmasc lesbian comrade with Long COVID/MECFS is spending his 2nd pride month bedridden by chronic illness. His total 24hr care requires $4k/week! We currently have less than $2k. Please help our friend survive pride month."
The flyer also includes QR codes for Venmo, Zelle, Cashapp, and PayPal. The Venmo handle is @Ash-L1n-1 and Cashapp is $volcanoashh. Donations should include the note "for care team."

Flyer reading: "Urgent: Volunteers needed. Calling on volunteers to help table at various Pride events to sell t-shirts, zines, etc. We urgently need to fundraise for our trans comrade who has been bed/housebound with Long COVID/MECFS for over a year. His 24hr care requires $4k/week, and his care team is running low on funds and capacity. Contact thepeopleshealtheduprogram@protonmail.com"

Flyer reading: "Seeking COVID realist volunteers (NYC) to help us care for a loved one with extremely severe ME/CFS. DM or email thepeopleshealtheduprogram@protonmail.com with any leads!"

betsy ladyzhets 😷@betsyladyzhets· Mar 26

Couple of notable Q&As from the chat - IVIG timing, overall funding for RECOVER-TLC. (h/t @ezra.zone on the funding one)

Screenshot from Q&A- RECOVER-AUTONONMIC IVIG trial has completed enrollment, results expected later this year

Screenshot from Q&A - original funding for RECOVER-TLC was $299M, currently they plan more than the four studies announced so far.

betsy ladyzhets 😷@betsyladyzhets· Mar 26

Marconi says that trial participants have given good feedback about their experiences in the study so far. Some challenges include getting documentation of SARS-CoV-2 tests, concerns about side effects of baricitinib, people living far away from trial sites.

Slide from REVERSE-LC presentation on enrollment experiences. successes include enrollment on target, biorepository operational, NIAID/RECOVER-TLC sites onboarded; challenges include SARS-CoV-2 documentation, people being too sick/fatigued for appointment, distance that patients live from trial sites

betsy ladyzhets 😷@betsyladyzhets· Mar 26

REVERSE-LC recruitment is going well! They have 163 people randomized as of last week out of 550 total in the study. New sites supported by RECOVER-TLC are quickly coming online, and a couple of people have already been enrolled at those.

REVERSE-LC target and actual randomizations - currently have 163 people randomized, on target based on their goals

RECOVER-TLC expansion sites update - 10 sites open to pre-screening and 9 open to randomization

betsy ladyzhets 😷@betsyladyzhets· Mar 26

REVERSE-LC has a bunch of study outcomes, including CPET testing, tilt table/autonomic function testing, and exploring potential viral persistence biomarkers. Marconi noted that many trial participants meet criteria for POTS but are often undiagnosed.

RECOVER-TLC slide: REVERSE-LC study objectives. Primary objective is safety and efficacy of baricitinib vs placebo on neuropsych outcomes; secondary objectives include CPET, autonomic function, other testing and quality of life; there are a few exploratory objectives

RECOVER-TLC slide: going into more detail about the CPET testing -- people can opt into 1-day CPET rather than 2-day to minimize PEM

RECOVER-TLC slide: more REVERSE-LC secondary outcomes, looking at POTS thru tilt table test, other autonomic testing

REVERSE-LC exploratory outcomes - including blood plasma and CSF biomarkers, aiming to look at viral persistence

betsy ladyzhets 😷@betsyladyzhets· Mar 26

Vince Marconi from Vanderbilt is giving some updates on the REVERSE-LC trial. This trial was originally funded by the National Institute on Aging; support from RECOVER-TLC has enabled it to expand to more trial sites and recruit more quickly.

Slide from RECOVER-TLC webinar sharing trial sites for the REVERSE-LC trial. The map includes 7 sites, four enrolling patients and three that are scientific support

betsy ladyzhets 😷@betsyladyzhets· Mar 26

RECOVER-TLC has a new community advisory board, which includes 12 patients, caregivers, and community reps. This group is meeting regularly, providing feedback on trials, developing resources for the community (like recruitment materials), and considering how to make trials accessible.

Slide from RECOVER-TLC with text describing the community advisory board. "Purpose; embed meaningful engagement of Long COVID patient and community representatives at the stage of trial operationalization"

betsy ladyzhets 😷@betsyladyzhets· Mar 26

The RECOVER-TLC portal for treatment suggestions is still taking new submissions. They will also reassess prior submissions if new data become available in support of a particular treatment. Link: customervoice.microsoft.us/Pages/Respon...

Slide from RECOVER-TLC webinar, sharing a pie chart based on data from portal submissions of potential Long COVID treatments. Drug submissions are by far the most common at 73% of submissions.

betsy ladyzhets 😷@betsyladyzhets· Mar 26

Current progress on the trials: GLP-1: Protocol is nearly done LDN in children: Protocol went through public comment, now in the process of finalizing REVERSE-LC/Baricitinib: Still recruiting SGB: Protocol just went through public comment

Slide from RECOVER-TLC webinar sharing updates on the four TLC-supported trials

betsy ladyzhets 😷@betsyladyzhets· Jan 23

And more details about the SGB trial. This will be a phase 2 randomized trial; it will be unblinded for providers administering the treatment, but blinded for patients.

RECOVER-TLC slide, "Stellage Ganglion Nerve Block: Study Overview"
text includes that this will be a phase 2, randomized, blinded, sham-controlled trial to assess efficacy and safety of a series of 4 injections administered to adults with Long COVID.
proceduralists must be unblinded but will have limited interactions with participants.

betsy ladyzhets 😷@betsyladyzhets· Jan 23

Some new info from Breen about the planned GLP-1 trial: they plan to test semaglutide, and the manufacturer is "willing to collaborate with RECOVER-TLC." The study "will be powered for adults but we do expect to have an adolescent component," Breen said.

RECOVER-TLC slide, GLP-1 receptor agonist overview

betsy ladyzhets 😷@betsyladyzhets· Jan 23

Another slide from Breen, sharing updates on the four trials announced so far. LDN had a public comment period in late 2025. REVERSE-LC, the baricitinib trial, is already underway as it was a preexisting trial that got additional funding from RECOVER-TLC.

RECOVER-TLC slide titled, "Progress Towards RECOVER-TLC clinical trials." There are four trials: GLP-1, LDN, REVERSE-LC (baricitinib), stellate ganglion block. REVERSE-LC is in recruitment, LDN has gone through public comment, the other two are in protocol development.

betsy ladyzhets 😷@betsyladyzhets· Jan 23

Joe Breen from NIAID discussed the principles that RECOVER-TLC used to select treatments for its trials.

RECOVER-TLC slide sharing principles for agent selection. Those include: "Listen and learn from the community; Lead with science; Target different approaches; Consider what other groups are doing."

betsy ladyzhets 😷@betsyladyzhets· Jan 23

So far, the webinar has mostly included a recap of RECOVER-TLC's process for reviewing recommended Long COVID treatments from the patient & research community. Working groups reviewed hundreds of treatment submissions.

Slide from RECOVER-TLC - titled, "Agent Prioritization: Therapeutic Submission Portal." Some stats - 480 days of submissions, 375 respondents, 597 submissions. The majority of those have been drugs, with smaller numbers in the categories nutrition and diet, device, manual and physical therapies, complementary and integrative health.The portal is still open.

betsy ladyzhets 😷@betsyladyzhets· Dec 2

It's #GivingTuesday. At @thesicktimes.org, our end-of-year fundraiser has been lagging behind; we're hoping to raise $10k today to get back on track. Here are a few recent stories that demonstrate our unique role serving the Long COVID community. the-sick-times.fundjournalism.org/donate/ (1/10)

Purple graphic with white text. Text at the top reads, "Our reporting serves our Long COVID community. Your donation makes it possible." Below, there are two thermometers showing donation progress. The first is titled "New donations" and goes from $0 to $60k; donations so far have reached about $16k. The second is titled "New monthly supporters" and goes from 0 to 200; so far, this number has reached 44. At the bottom right, there are the Sick Times and NewsMatch logos.

betsy ladyzhets 😷@betsyladyzhets· Nov 14

NEW from the PolyBio Symposium: UCSF is launching a combination trial for Long COVID, called COMBAT-LC. It will include Paxlovid (antiviral) and Pemgarda (monoclonal antibody). thesicktimes.org/2025/11/14/l...

Next, Peluso announced another new trial, called COMBAT-LC, which will test Paxlovid and the monoclonal antibody Pemgarda in combination. A recent preprint shared that Pemgarda improved Long COVID symptoms in a case series, adding to anecdotal reports from people who have tried the drug. This is also the first Long COVID clinical trial to stratify participants based on antigen positivity in their blood, Peluso said, and it may include a crossover option allowing people who initially receive a placebo to try Pemgarda later.

We don’t know how SARS-CoV-2 persists in the body, Peluso said during his talk; just at today’s symposium, researchers presented evidence that it might be inactive genetic material, active genetic material, or even active viral replication. The COMBAT-LC trial will be a significant step toward understanding viral persistence.

Slide from Peluso's presentation showing the design for COMBAT-LC. After screening and assessments, 50 participants will receive either Pemgarda (Pemivibart) or a placebo along with Paxlovid for 15 days. The trial may include an open-label extension in which participants who got the placebo are able to try Pemgarda.

betsy ladyzhets 😷@betsyladyzhets· Oct 31

Good morning from Ann Arbor, MI! I am here covering the IACC Case Competition at the University of Michigan Ross School of Business. Seven teams will compete with innovative business ideas to serve people with Long COVID and other IACCs.

Photo showing an event room at the University of Michigan, with wood paneled walls and attendees seated at circular tables. Event organizer Armani Guerra is speaking at the front of the room. Most attendees are not wearing masks.

betsy ladyzhets 😷@betsyladyzhets· Oct 16

Toward the top, the story claims that Trump administration cuts to the NIH "disappeared" the RECOVER program. Which is completely false? RECOVER has continued operating, the observational arms are coming up on five years, and TLC is launching new clinical trials. (2/4)

But since the earliest days of the second Trump administration, the dollars that could help those suffering from the illness have quietly faded away. In March, cuts to the National Institutes of Health (NIH) disappeared the nearly $2 billion invested in the RECOVER (Researching Covid to Enhance Recovery) initiative, hamstringing research that might have yielded diagnostic tests or better treatments. The same week, the administration shuttered the Department of Health and Human Services’ Office of Long Covid Research and Practice.

betsy ladyzhets 😷@betsyladyzhets· Oct 7

COVID-19 data are limited this week due to the government shutdown, but we are not entirely without information on how the disease is spreading. Many independent dashboards as well as state and local sites continue to offer info. (1/3) thesicktimes.org/2025/10/07/n...

The Sick Times COVID-19 trends graphic. Text reads:
"COVID-19 data are limited this week due to the government shutdown, now the second time that vital disease surveillance has been interrupted since Trump took office in January. The CDC has not updated the majority of its COVID-19 and respiratory disease data pages since September 26.

Still, we are not entirely without information, largely thanks to independent data services and researchers. The CDC did update a handful of national-level COVID-19 metrics last Friday. WastewaterSCAN and Biobot Analytics have continued sharing wastewater surveillance data on their regular update schedules. And epidemiologist Caitlin Rivers (whom I recently interviewed) combed through state health department websites to report state-level trends."

betsy ladyzhets 😷@betsyladyzhets· Sep 17

Just announced: HHS Secretary RFK Jr. is hosting two "roundtable discussions" about Long COVID tomorrow at 2 p.m. ET. @thesicktimes.org will be covering the event and reactions from the Long COVID community. (Reach out if you'd like to send us comments during or after!)

Screenshot of text:
MEDIA ADVISORY—FOR PLANNING PURPOSES ONLY

Livestream: Secretary Kennedy Convenes ‘Leading the Way on Long COVID’ Roundtables

WASHINGTON—SEPTEMBER 17, 2025— Health and Human Services Secretary Robert F. Kennedy, Jr. will lead two roundtable discussions to drive actionable steps against Long COVID in the United States — one focused on patient experiences and the other on research. The event underscores the Trump Administration’s commitment to confronting the “invisible illnesses” that affect millions of Americans.

WHO:

Health and Human Services Secretary Robert F. Kennedy, Jr.

FDA Commissioner Dr. Marty Makary

NIH Director Dr. Jay Bhattacharya

U.S. Senator Roger Marshall (R-KS)

U.S. Senator Todd Young (R-IN)

Congressman Jack Bergman (R-MI)

Additional patients, providers, medical professionals, and others researching, treating, and who have been affected by Long COVID.

WHEN:

Thursday, September 18 at 2 pm ET

WHERE:

The event is not open to the public but press and the public are invited to watch the event livestream on HHS.gov, X, YouTube, and Facebook.

betsy ladyzhets 😷@betsyladyzhets· Sep 13

Tabling on behalf of @thesicktimes.org today at the NYC Anarchist Book Fair! We have free masks as well as Sick Times merch and Long COVID info. Will be here at Ave C & 9th St in the LES all day.

Photo of a table with The Sick Times zines, pins, stickers, patches, masks, and info sheets about Long COVID & COVID-19

Photo of Betsy sitting behind the table full of Sick Times merch. She's wearing all green and a KN95 mask

betsy ladyzhets 😷@betsyladyzhets· Sep 10

A note on access, from @thesicktimes.org's live blog of the RECOVER-TLC meeting: Despite attendance from many Long COVID community members — and despite taking place amid a COVID-19 surge — the workshop has not prioritized acute COVID-19 precautions. thesicktimes.org/2025/09/09/l...

Despite attendance from many Long COVID community members both in person and virtually — and despite taking place amid a COVID-19 surge in the U.S. — the RECOVER-TLC workshop has not prioritized acute COVID-19 precautions, some attendees told The Sick Times during Wednesday’s lunch break.

The workshop has not required high-quality masks, distinct from other Long COVID events such as last month’s Keystone Symposia meeting. Some NIH staff and speakers have worn masks, but taken them off to deliver presentations. Meeting staff also made KN95s available to attendees. One advocate at the meeting in person observed that an attendee behind her was loudly coughing without a mask on.

In addition, the meeting space has not provided any outdoor seating options during meals, leaving attendees seeking to avoid SARS-CoV-2 reinfections to eat sitting on the ground and sharing a single bench outside the hotel’s main entrance.

betsy ladyzhets 😷@betsyladyzhets· Aug 12

The piece concludes with quotes from Peluso's keynote talk at the Keystone Symposia meeting yesterday, which I thought offered such a great summary of where we are currently at with Long COVID trials and where we need to go. thesicktimes.org/2025/08/12/n... (3/4)

Speaking at the Keystone Symposia meeting in Santa Fe this week, he encouraged the Long COVID field to be open-minded about this hypothesis. “We need to come to the middle,” he said, between people who think “this must be the only mechanism that is important” and those who think it’s not important at all. “What we need to do is actually figure this out, and we have not yet generated the data that we need to answer this question.”

“We need to be going a lot farther down these various mechanistic pathways, and doing it a lot faster,” he added later in his talk. “They all have therapeutics that we can name, and we need to be testing all of these pathways in parallel right now, not in series over decades.”

betsy ladyzhets 😷@betsyladyzhets· Aug 4

my bike ride today was basically: I knew, intellectually, that Beach 149th St implies the existence of a Beach 1st St, but I did not physically realize how long the Rockaways island is

Strava screenshot showing that Betsy biked about 48 miles over 4.5 hours, with an elevation gain of 576 ft

Photo of Betsy's bike on the Long Beach boardwalk

More Rockaways at golden hour, with the NYC skyline very faintly visible in the back

betsy ladyzhets 😷@betsyladyzhets· Jul 22

This is one of my favorite passages, featuring long-time ME patient-researcher Helen Brownlie. Her point about RCTs has really stuck with me. (3/8)