📣: Today the government committed to prioritizing #LongCOVID, but didn't announce any new funding - a major ask of advocates and researchers. @betsyladyzhets.bsky.social & I reported on today's Long COVID roundtable for @thesicktimes.org ⬇️ thesicktimes.org/2025/09/18/k...

Buckle in, folks. #LongCOVID www.youtube.com/live/-eorSN8...

There's so much exciting work summarized in this post. I'm particularly excited about the advances in continuous protein monitoring (CPM).

I’d be so grateful if #MedSky would share this—it’s a really quick way to get up to date with a common and debilitating outcome of Covid infection.

💊➕: Combination therapies effectively treat a variety of disease & conditions. @atranscendedman.bsky.social writes that a cocktail of drugs is necessary for Long COVID. "Single-drug approaches feel almost quaint in the face of such biological complexity." thesicktimes.org/2025/09/12/s...

Michael Peluso’s team at UCSF is looking for pre-Covid #pwME in the SF Bay Area. I've heard great things about their Long Covid work and suspect this study will be fruitful!

Slides presented by Jason Liang at RECOVER-TLC day 2 showing the type of timeline I would have hoped to see given the level of funding available Start to initial results in one year

Highly recommend that anyone planning clinical trials for people with post-exertional malaise review this talk. The video is linked below & full transcript here: vashetc.com/supporters/p...

With $300M, RECOVER-TLC reported being unsure whether they can fund more than the 4 trials announced today after a year of planning. This is shockingly inefficient. They should be able to run a platform with at least 10 trials. Patients & taxpayers deserve more urgent & effective action.

NEW @thesicktimes.org: RECOVER-TLC announces new clinical trials, responses from the Long COVID community are mixed. "Overall if [the first] round of trials was D grade, I’d put this in B- territory," said @loscharlos.bsky.social. thesicktimes.org/2025/09/09/r...

Sums it up.

Help needed from LC pals! The CURE ID survey, where you report meds and supps you’ve tried, is reopening! If you’ve reported before, they’d love more info on what *didn’t* work for you, and what you’ve tried more recently. And if you’re new to this, they want you to join in! Overview below:

"A few months ago, I told a higher-up at The New York Times—we’re talking very high altitude—that I’d been struggling with long COVID. His reply: “Is that the excuse everyone at The Atlantic uses when they’re unproductive?” It was a staggeringly insensitive thing to say." 1/2

- We are likely at or near peak summer Covid - Sore throats are up, too - No flu or RSV yet, at least. - Big recall of frozen shrimp caitlinrivers.substack.com/p/school-yea...

Reminder that I'm working on a story about the upcoming RECOVER-TLC trials for @thesicktimes.org and would love to hear from more Long COVID community members about what they think of the apparent agent selections. Also interested in talking to people with experience on the working groups. (1/2)

"it is imperative to align my professional responsibilities to my system of ethics & my understanding of the science of infectious disease, immunology, ... I am unable to serve in an environment that treats CDC as a tool to generate policies & materials that do not reflect scientific reality" 1/3

A randomized trial of for eye care by ophthalmologists with A.I. vs ophthalmologists without A.I. demonstrated much higher accuracy in diagnosis (92 vs 74%) and many other improved outcomes @NatureMedicine www.nature.com/articles/s41...

If this was a drug, it would be a blockbuster prevention vs Alzheimer's disease for APOE4 homozygotes, with 35% reduction of risk!

Today is the day of our Long COVID Treatment Trial (LoCITT) webinar. Hope to see you there! Register here: scrippsresearch.zoom.us/webinar/regi...

You're invited to a webinar introducing the Long COVID Treatment Trial (LoCITT) on August 26th at 2pm eastern / 11 am pacific: scrippsresearch.zoom.us/webinar/regi... We'll talk our remote study design & how you can contribute from wherever you are. There will be lots of time to discuss.

The #Gaza famine has unfolded in front of the world’s eyes. We saw it coming. We warned about it. We were not allowed to stop it. Now, as we count the lives lost to this intentional starvation, there is only one question to ask leaders: Where is humanity? End the blockade of aid TODAY. CEASEFIRE!

Researchers told me that, compared with pre-pandemic times, people are living with more inflammation and immune disruption now, whether they have long COVID or not. Months later, Akiko Iwasaki's final line still echoes in my head: “the entire world is pretty much the convalescent control.” (2/5)

@julialmv.bsky.social of @scripps.edu is hosting a webinar on Aug 26 at 2ET/11PT introducing the upcoming LoCITT trial for Long COVID! I'll be there, and I encourage you to join. Here's the registration link: scrippsresearch.zoom.us/webinar/regi... And here's the study site: longcovid.scripps.edu

US researchers analyzed 47,654 clinical notes from 11 health systems and built a hybrid AI tool that detects Long COVID symptoms with high accuracy, offering faster and more reliable diagnosis than billing codes. www.nature.com/articles/s44...

All in all – this is how trials should be run! Please join the webinar if you can! Here's the link again: scrippsresearch.zoom.us/webinar/regi...

My life lately. See also: Get diagnostic test Crash for days Test comes back fine/inconclusive

You're invited to a webinar introducing the Long COVID Treatment Trial (LoCITT) on August 26th at 2pm eastern / 11 am pacific: scrippsresearch.zoom.us/webinar/regi... We'll talk our remote study design & how you can contribute from wherever you are. There will be lots of time to discuss.

Almost done with my very very short pres for the recover workshop and shes cute

US study of over 12,000 military personnel found wearable devices detected persistent heart rate and HRV changes in 9.4% of COVID-positive cases, offering an objective way to spot potential Long COVID effects weeks after infection. www.nature.com/articles/s41...

That's right. Gift link www.nytimes.com/2025/08/18/o...

I made an audio recording of my first Substack post (briefly describing what's happened for me since Through the Shadowlands came out, along with my plans for the Substack). I plan on doing this with every post, since I know some ME friends can't read. jrehmeyer.substack.com/p/what-the-w...

This is a must read/listen "once it happened, my only choices were to accept it willingly or not accept it willingly. Mostly, I’ve chosen to accept it willingly, because it has eased my outrage, given me the sensation of my hands on the helm, & allowed me to feel generous toward the world..." 1/2

"We are constantly asked to produce at a high level — I don’t subscribe to that anymore. I do what I can, I pace myself, & I encourage everybody to do the same... allow yourself grace to go at your own pace... We need mutual aid, community efforts, & standing in the gaps for one another."

US study of 2983 adults with mild COVID found 2.3% on metformin vs 3.0% on placebo reported symptoms at 6 months. This trend favored metformin but fell short of the trial’s threshold for proven benefit. www.medrxiv.org/content/10.1...

Financial impact of long COVID can linger for years, study finds Fifty-nine percent of participants with long COVID attributed their work loss to their symptoms. www.cidrap.umn.edu/c...

Three prominent clinical trials targeting viral persistence in Long COVID with short treatment courses did not find the drugs helped improve people's health. But this is far from the end of the road for persistence trials. I unpacked the current state of the field @thesicktimes.org: (1/4)

COVID-19 rates continue to take off across the U.S. as our summer surge hits every region. All metrics report substantial increases in SARS-CoV-2 spread in recent weeks — and the latest data are from early August, meaning levels may be much higher now than our reported numbers. bit.ly/4mgGDAP

Will's detailed thread about using Claude Code as a coding assistant parallels my experience using ChatGPT o.3 and o.4 as a proof assistant.

Diagnosis and characterization of people with #ME/CFS (vs controls) using circulating cell-free RNA, indicative of immune system dysfunction and pro-inflammatory cytokine signaling www.pnas.org/doi/10.1073/...

Great to see this qualitative study: "Conclusion Pacing is a challenging and complex strategy used to mitigate symptoms of Long COVID. Healthcare providers should work collaboratively with patients to further refine and implement this strategy, when appropriate."

August 8 is Severe ME Day. It recognizes the 25% of people with myalgic encephalomyelitis (ME) whom this neuroimmune disease has left so severely ill, we're home- or bedbound. 1/

On Severe ME Day, my hope is for recognition that this is a humanitarian crisis on a massive scale. I hope everyone aware that this is happening will commit to demanding a commensurate response from government, industry and charitable giving. 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.

All academic institutions will soon realize we are in this together, facing an autocratic ruler who wants to destroy academia, science, and public health (together with media and courts - pick up a history book). There is only one solution - stand up, speak up, and, critically, collective action.

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

Great information and recommendations re: severe ME in the below thread

As we head into the 11th #COVID wave in the US, predicted to peak in mid-September, wanted to reshare these vital info resources in English and Spanish from @thesicktimes.org & @longcovidjustice.org on #COVID19 and #LongCOVID

Here's a recording of a talk I gave in April re: rehabilitation and LC. This was the first time I was asked to intentionally meld research data & personal experience Thanks to @uoftcovidrehab.bsky.social for inviting me & for hosting an almost entirely masked audience! youtu.be/6wPHa1eZ8eU?...

Favorite quotes: "I often feel like I have nothing left to say, beyond: it sucks it sucks it sucks, the end." "I’ve survived it, in large part, because of friends with severe ME — people I’ve never met in person, many of them still far too sick to speak or move." ❤️‍🩹

'Long Covid Patients Can Sign up for Remote Clinical Trial Notification, Announces CareEvolution' 'At-home participation in a study by Scripps Research and Schmidt Initiative..' “We need aggressive, rapid efforts to turn the tide on this very difficult condition" firstwordpharma.com/story/5986243