"Long COVID received 14% of its disability commensurate funding... ME/CFS is the most under-funded condition, receiving <1% of its YLD [years lived with disability] proportionate funding." Plus the LC disability weight of 0.21 likely underestimates its burden. www.nature.com/articles/s43...

We make a proposal: we believe that *routine* patient review for *all* manuscripts on Long COVID would create a clear incentive for institutional researchers to preemptively consult with and integrate feedback from patient researchers. 6/

Many Long COVID scientists fail to meaningfully draw on the insights of patient-researchers. In our Comment for @thelancetinfdis.bsky.social, we propose a solution: make all Long COVID papers undergo pre-publication patient review. 1/

“I think it’s incredibly important to do whole genome sequencing for outbreaks,” Andersen said, “but we shouldn’t need to do this for measles in the first place, because we have an extremely effective and safe vaccine.”

The incidence of cardiovascular disease in people with #LongCovid is elevated, as seen in a prospective study of >1.2 million individuals in Sweden, specifically coronary artery disease, arrhythmias, and heart failure www.thelancet.com/journals/ecl...

There have been no federal funding opportunities in the infectious disease space for close to 1.5 years. A while back, a few "forecasted" opportunities popped up, however, all of those just went the way of the dodo 👇 Good read on what's happening here: elizabethginexi.substack.com/p/inside-the...

If FDA does this, which is likely succumbing to pressure from RFK Jr, it crosses a new red line and, as far as I know, unprecedented. Lifting a ban on drugs that are injected into the bloodstream without data for safety or efficacy, so they can be compounded and further promoted to Americans.

If I magically woke up 100% better tomorrow I would still be extremely not OK. I would still have lost my whole life & my ability to relate to or trust most humans. Getting my body back would bring the potential of rebuilding a life, but I’d be doing it from scratch & from a place of enormous trauma

Ms. Magazine: Mifepristone Could Treat Endometriosis, Some Cancers, Depression & Chronic Illness—If Politics Didn’t Interfere “We’re using mifepristone..to reboot..adrenal axis.." Klimas says "She also sees potential..to treat chronic fatigue syndrome, long COVID.." msmagazine.com/2026/01/21/m...

Grateful to see coverage of pregnancy with LC and/or ME! When I asked an OB/GYN (years ago) about what to consider re: pregnancy with ME & LC, I was told "It's just a matter of how tired you're willing to be." It's SO much more. 1/2

Transferring IgG antibodies from patients with #LongCovid to mice recapitulates many symptoms www.sciencedirect.com/science/arti...

"ME patients can sometimes short-term push outside our energy envelope, but as one physician said, if you do that it’s like borrowing money from the mob – you will pay and then some. This is most often how people with ME worsen and die. ... Don’t let bias and prejudice steal your hope."

🚨 Want to work at @nature.com with me? We have an ultra-rare opening on my team of reporters. This reporter, based in NYC or DC, would cover physical sciences, energy, environment, Al and policy. You'd get to work with some of the most talented editors in the biz! DM w/ any Qs. Apply by March 20!

If you were/are in the healthcare field and are living with Long Covid, please fill out this survey (to help out a grad student): twu.qualtrics.com/jfe/form/SV_...

150,000 undercounted deaths in the 1st yr of the COVID-19 pandemic. Disproprotionately represented were Black, Latine/o/x, Indigenous, Asian ppl, ppl w/ less than a H.S. education, ppl w/ lower household incomes & worse preexisting health. Thus, underestimating the extent of COVID19 inequities

19% more deaths from Covid in the US than counted thru 2021 www.science.org/doi/10.1126/...

Today @thesicktimes.org: our big roundup of global events & actions for International Long COVID Awareness Day! With a special focus on Austin, TX, the latest city to formally recognize the day. thesicktimes.org/2026/03/17/a...

Now at 2 million downloads and the 4th highest @altmetric.com rated peer-reviewed paper in the past 3+ years Thanks to @ahandvanish.bsky.social @lisamccorkell.bsky.social @julialmv.bsky.social www.nature.com/articles/s41...

This is a great resource for up to date info on LC risks, comorbidities, prevalence, biology, and more!

I’ve tried a lot of these & while I’m still sick as shit, the relief I’ve gotten that has allowed me to survive this long & not decline even further has mostly come from things on this list. Everyone deserves access to trial these interventions.

Today @thesicktimes.org: We're excited to help introduce the new PLRC-RTHM Long COVID Treatment Guide, with an op-ed by @leticiasaurus.bsky.social and @jencurtinmd.bsky.social! thesicktimes.org/2026/03/12/a...

We collated the latest data to enable conversations between people with Long COVID and their providers about what interventions to try. I hope this helps folks make thoughtful decisions about what is right for them & decreases some suffering ❤️‍🩹

Love this message for LC awareness month ❤️‍🩹

🔈 Join us on April 20, 2026 at Columbia University (in-person and virtually) for a free and public one-day symposium on #LongCovid and Society. 🔗 Learn more and register: longcov.id/society

Keep loving, keep fighting! #LongCOVIDAwarenessMonth

Have you tried "off-label" meds for Long COVID and associated conditions (LCAC)? Learn more in this resource from our Long COVID Essentials series, created in partnership w/ @thesicktimes.org: longcovidjustice.org/off-label-meds

We haven’t seen many narratives about — or for — kids whose family members have #LongCOVID. Author and educator Sara Robitaille seeks to change that with her two new children’s books, Long COVID Transformed My Mommy and Long COVID Transformed My Sister into a Turtle. bit.ly/4csWXfE

❤️‍🩹

Hi everyone, I wanted to share a research study I just launched on rest, energy, & ME/CFS, open to people with ME/CFS & medical or healthcare providers who are currently practicing or conducting research & have had at least 1 patient or participant with ME/CFS. Visit restandmecfs.com for more.

The Long Covid Innovation bill will be heard next in the Maryland Senate! 🥳 If you sent your story already, you can increase your impact by reformatting w/ the Senate bill number (SB0392) and uploading again Tues 2/10 8am-6pm! And if you needed a little more time, here it is! Instructions:

This study is so well done and I can't wait to see the results. Highly encourage people with ME and those who provide health care for them to participat: restandmecfs.com

Inflammation, cell and mitochondria damage biomarkers, and links to cognitive dysfunction in #LongCovid relative to recovered controls www.nature.com/articles/s41...

Wondering how to meet your nutritional needs while taking a GLP-1 for chronic illness? Here is the recording of a webinar on this topic: youtu.be/0nVY7cALW2U?... This is an educational resource (not medical advice) & if any of the information is not up your alley - feel free to leave it. 1/2

New research from Griffith University shows people with ME/CFS and Long COVID have altered brain connectivity during cognitively demanding tasks, offering insight into brain fog, memory challenges, and mental fatigue. 🔗 news.griffith.edu.au/2026/01/28/a...

This is simply insane - demanding the removal of a perfectly safe preservative will require changing the entire production and distribution pipeline. For no reason whatsoever. While the money is held up, tens of thousands of children are at risk of dying from preventable diseases.

Good!

2 million! The scale of people that this review reached is incredible I can only imagine what the next 3 years of researching and publishing on Long COVID has in store for us 🎢

Please help us spread the word. We are hiring postdoctoral fellows in Clinical Epidemiology and Pharmacoepidemiology. Details and application via Indeed.

This has implications for energy limiting conditions, which force folks to increase sedentary time & decrease physical activity: www.thelancet.com/journals/lan... "...increases in moderate-to-vigorous intensity physical activity of 5 min/day might prevent up to...10% of all deaths..."

“In genetics and complex disease research, scientists often apply what is known as the extreme phenotype strategy … Studying those at the farthest ends of the spectrum amplifies biological signals and accelerates the discovery of causal pathways and potential drug targets.”

"If we truly want to understand this disease, it is these patients, the ones most severely affected, whom we cannot afford to leave behind. They are not beyond the reach of science; they are where real progress begins." 1/2

If you haven’t read Alice Wong’s memoir yet, the ebook is on sale for $1.99 today at @bookshop.org ! Link: bookshop.org/p/books/year...

This post is dedicated to anyone who is considering re-starting masking in public: "from October 2022 to September 2023, there were an estimated ... 101,300 deaths. From October 2023 to September 2024, there were an estimated ... 100,800 deaths." jamanetwork.com/journals/jam... 1/2

Podcasters & social media folks - take a look at this opportunity to do important work with amazing humans!

Important safety update among the info synthesized here: "...these analyses do not demonstrate an increased risk of suicidal ideation with use of GLP-1 medicines, with the majority of analyses revealing a similar or lower risk for incident or recurrent suicidal ideation..." doi.org/10.1038/s415...

Meighan fights SO hard for the Long Covid community—please share/boost/donate if you’re able 🩵

Excellent paper. I really hope #LongCovid researchers implement these recommendations.

Out today - our recommendations for Long COVID clinical trial design, focusing on currently available outcome measures: www.sciencedirect.com/science/arti... We make 5 overarching recommendations for Long COVID clinical trials: 1) thorough characterisation of baseline disease 1/3

Holiday gathering reminder 🎁 If your guests test w/rapids twice before the event, 48 hours apart, it’ll catch 63% of Covid cases even if they have no symptoms. Testing 3x improves that to 79%! This is how we curb the annual January surge that gave me Long Covid—thanks for protecting yr community 🤍