Julia MV

The Sick Times News Match It's Giving Tuesday! Our end-of-year fundraiser has been moving more slowly than we planned. To help us get back on track, we're hoping to raise $10,000 and gain 50 new monthly supporters (at any amount!) by the end of the day today.

Since Betsy and Miles launched this nonprofit publication in 2023, we've made it our mission to provide essential news and information to people with Long COVID, related diseases, and their loved ones during the ongoing pandemic - and we're not slowing down any time soon. Whether you're following for our COVID-19 trends, research explainers, clinical trial updates, or personal essays, our fact-based reporting helps you better understand the continuing Long COVID crisis.

Can you help power our Long COVID reporting! DONATE TODAY The Sick Times News Match

Other ways to support us We understand that many people in our community aren't able to donate. This is why we'll never have a paywall — our stories will always be completely free to read. If you aren't in a position to donate yourself, here are a few ways you can help: • Share this email/this post with a friend/family member • Tell us why you find our work valuable • Send any ideas you have for potential funding sources The Sick Times News Match

It’s #GivingTuesday! Will you help us get our fundraiser back on track and keep our #LongCOVID journalism going? the-sick-times.fundjournalism.org/donate/

Now >900 LoCITT-T participants.

We're close to a last call for participants!

Still hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...

You know someone with Long COVID. They need you to ask about it genuinely. - The Sick Times If community-building is a bulwark against autocracy, then asking after one another might be a good place to start.

Required reading if you care about someone with Long COVID:
thesicktimes.org/2025/11/28/y...

"It’s exhausting, having to constantly censor this part of myself...
Avoiding the topic feels absurd — like I’m standing in quicksand,
& we’re chitchatting over glasses of lemonade as I slowly sink."

If you have relatives with long covid and will be seeing them tomorrow (or won’t be because they have long covid) please spread the word about this trial of tirzepatide for LC. I’m enrolled, the anecdotes I hear from patients on it for other reasons are very encouraging.

Map of the US with states colored by the number of LoCITT participants per state: States with 20+ are WA, OR, CA, CO, TX, MD, MO, IL, MI, OH, PA, NY, MA, MD, VA, NC, FL States with 0 are ND, MS, HI The rest have between 1 and 19 participants

There are >800 LoCITT-T participants, & >200 people who are eligible & just need to take one more step to claim their spot.

There's time for new folks to join!

We're particularly hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...

What questions do YOU have about this Long COVID clinical trial? @Scripps Research #longcovid #longcovidadvocacy #longcovidtreatments #clinicaltrials #chronicillness TikTok video by Ezra

baby just posted his second ever tiktok! trying to spread the word about the @julialmv.bsky.social's amazing clinical trial.
www.tiktok.com/t/ZTr2Rnwry/

if you are a tiktok user could you like and engage so it gets picked up? let's get this trial fully enrolled in record time!

We're working through the responses - the team should reply today.

We've enrolled more than 700 participants (of 1,000 planned) in 3 weeks to a randomized trial for treatment of #LongCovid

Me too. My goal is to expand there next if the intervention is successful in this cohort.

We're still open to enrollment as of today!

The team is reviewing information as soon as they can after submission. If it's been more than a one business day, please email the study team at: longcovid-t at scripps dot edu

We are up to 688 LoCITT participants!

If we could enroll all 1,000 participants within a month of launch (by 11/30), it would send a powerful message about the demand for remote Long COVID clinical trials.

We appreciate the community's help to spread the word:
longcovid.scripps.edu/locitt-t/?ut...

A Sankey chart showing the 112 exercise trials. 21 measured PEM and only 4 excluded participants who experienced it.

Bar plot showing the number of Long COVID exercise trials over time that mention PEM in the registration

A few charts we created for this analysis.

Not knowing about PEM is proof positive you don't know IACCs.

Even if you're not studying #MECFS, omitting the possibility of PEM in a trial for #LongCOVID (where many meet criteria for #MECFS) or for common comorbidities, like fibro, hypermobility disorders like #EDS, or #POTS is in error.

Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise - The Sick Times An analysis by The Sick Times find that less than 15% of Long COVID clinical trials testing the benefits of exercise or cardiopulmonary rehabilitation measured post-exertional malaise, according to th...

I've been surprised to see how many Long COVID trials focus on exercise & how few measure PEM.

Thanks to @spichaksimon.bsky.social for covering this in @thesicktimes.org

"Testing exercise is “money down the drain” & won’t advance understanding of LC, experts say"

thesicktimes.org/2025/11/21/l...

Graphic that shows that among republicans, support for school vaccine requirements has dropped from 79% in 2016 to 52% in October 2025.

Wanna see a visual on the result of the Republican attack on public health?

I’ve got you covered. This is from Pew Research Center’s most recent survey, showing a 27% drop in Republican support for school vaccine requirements from 2016-2025.

We are witnessing a poisonous effort to destroy what the vast majority of Americans know is a key pillar of public health.

Vaccines are responsible for 40% of the reduction in child mortality achieved in the last half century.

On the left, a photo of a lesbian in a KN95 respirator with puppies on it, thick black glasses, a flannel shirt, and a bunch of New York Liberty gear. On the right, white text on a purple background reads, "I got COVID-19 and then Long COVID in March 2020 in the first wave in New York. It was the scariest, hardest, loneliest experience of my life. The Sick Times made me realize I wasn’t alone in the fight to be seen, understood, and treated with respect."

If you're over legacy media, I've got great news! You can donate to our non-profit newsroom at @thesicktimes.org to help us keep investigating injustices, challenging powerful institutions, and offering a platform for those affected by the #LongCOVID crisis. the-sick-times.fundjournalism.org/donate/

Agreement of treatment effects in decentralised trials versus traditional trials: meta-epidemiological study Objective To compare treatment effects from trials designed as decentralised trials or as traditional non-decentralised trials. Design Meta-epidemiological study. Data source PubMed database. Eligi...

"...but modest absolute deviations occur that may lead to different conclusions.
Beyond direct benefits to participants, decentralisation opens new avenues for randomised trials, including the facilitation of larger trials."

www.bmj.com/content/391/...

2/2

Agreement of treatment effects in decentralised trials versus traditional trials: meta-epidemiological study Objective To compare treatment effects from trials designed as decentralised trials or as traditional non-decentralised trials. Design Meta-epidemiological study. Data source PubMed database. Eligi...

Great to see this meta-analysis in BMJ:

"Decentralised trials provide similar answers to clinical questions as traditional, non-decentralised randomised trials.
They do not systematically overestimate or underestimate effect estimates, ..."

www.bmj.com/content/391/...

1/2

Yes - love that we as a community are showing (in addition to telling) the power of patient-led research ❤️

The Trump administration is dismantling efforts to fight the next pandemic A retreat from investments in drugs and vaccines leaves U.S. less prepared for the next viral scourge, experts warn

In decades to come, we will look back at 2025 - following the most devastating pandemic in a century - as the year we turned back hard-earned progress on combating infectious diseases.

That means the comeback of preventable diseases. And the emergence of new ones.

www.science.org/content/arti...

The new approach is essentially to stick your head in the sand and go to the gym as a model for pandemic preparedness.

Suffice to say, such a model will not work, but I don't want to belabor the point - I have made it many times already. E.g., here:

bsky.app/profile/kgan...

Congrats Eric - what a well-deserved honor!

“I never lose my optimism about advances in bio medicine and in the practice of medicine,” he says. Even if there are efforts to suppress that work, if it’s important enough, scientists will pursue it. “We just have to figure out a path to get it done.”

If you're not devastated by this news, please read some of Alice's work.

She was a champion for justice, lifting the voices of a broad array of disabled people, and disabled joy ❤️

disabilityvisibilityproject.com/book/

It is such a joy to share this trial with the Long COVID community!

We know the second 500 will be tougher to recruit & we'd love your help to finish enrollment quickly with as much diversity as possible

longcovid.scripps.edu/locitt-t/?ut...

Weight-Loss Drug Zepbound Is Being Tested as a Treatment for Long Covid GLP-1s are being studied for a wide range of conditions. Now, scientists will test whether their anti-inflammatory properties can help alleviate symptoms of long Covid.

The Scripps tirzepatide trial is in @wired.com today! Thanks so much for covering this @emilymullin.bsky.social!

The signup link for the trial: longcovid.scripps.edu/locitt-t/?ut...

Weight-Loss Drug Zepbound Is Being Tested as a Treatment for Long Covid GLP-1s are being studied for a wide range of conditions. Now, scientists will test whether their anti-inflammatory properties can help alleviate symptoms of long Covid.

GLP-1s are being studied for a wide range of conditions. Now, scientists will test whether their anti-inflammatory properties can help alleviate symptoms of #LongCovid. @wired.com @emilymullin.bsky.social
www.wired.com/story/weight...

Weight-Loss Drug Zepbound Is Being Tested as a Treatment for Long Covid GLP-1s are being studied for a wide range of conditions. Now, scientists will test whether their anti-inflammatory properties can help alleviate symptoms of long Covid.

LoCITT-T trial was covered by Wired today:
www.wired.com/story/weight...

My comments include:
"For the long Covid population...if you’re requiring people to come into a clinic, you’re systematically excluding the most severely affected folks who are housebound or bedbound."

I just had the thought "we're half way there"

And now I will have Bon Jovi in my head for the foreseeable future

Send prayers (yes that's a joke)