“We need diagnostic tests right now in Long COVID and related infection-associated chronic conditions”

Why are RECOVER’s first round of #LongCOVID clinical trials failing? In this episode of Still Here, producer @melaniemarich.bsky.social talks to @betsyladyzhets.bsky.social about why NIH trial results have left many patients and advocates in the Long COVID community disappointed. 🎧 bit.ly/4uNNdTD

The PolyBio Research Foundation recently announced new initiatives and centered biomarkers during their latest virtual conference. bit.ly/4fTn6G2

Breaking: The FDA appears to have approved the antiviral ensitrelvir (Xocova), which can be used as PEP after being exposed to someone with COVID-19 💊🦠 www.fda.gov/drugs/novel-...

A recent study found the drug significantly reduced the risk of COVID-19 when taken within days after an exposure. thesicktimes.org/2026/05/19/r...

Today @thesicktimes.org: Our roundup of last week's @polybiorf.bsky.social Spring 2026 Symposium! A team effort by me and @mileswgriffis.bsky.social, covering overarching themes and a few specific talks we found notable. thesicktimes.org/2026/05/29/p...

🧬 A new preprint linked Long COVID symptom severity with higher DNA levels of the herpesvirus HHV6 💻 A Swedish advocacy group published a resource, “Designing Studies for Patients with PEM” 🔬 The University of California, San Francisco is recruiting for an ME observational study bit.ly/4dTb5xZ

More than 50 experts from around the world presented the latest findings in basic and therapeutic research on myalgic encephalomyelitis (ME) and Long COVID at a conference in Berlin. bit.ly/3Rz4f9i

U.S. COVID-19 metrics have remained very low, with wastewater surveillance providers reporting their lowest national averages in several years. However, the most recent data suggest the lull may come to an end soon, as cases may be starting to increase in parts of the South. bit.ly/4uvq9Zv

International #MECFS Conference roundup: setbacks and new hopes for therapeutic research - my review of the researchers meeting in Berlin has just been published by @thesicktimes.org: thesicktimes.org/2026/05/26/i...

"Many of us in the Long COVID space are starting to look at Long COVID as a largely tissue-based disease," Amy Proal said in her opening remarks of the Polybio Spring 2026 Symposium this morning. I'll be following the virtual symposium today, where 30 experts will give updates on IACC research 👀

Been working on this one for a while, and thinking about the issues around mold and climate change for even longer. Thanks to @thesicktimes.org for giving it a home!

For more on this story and other links between chronic illness and climate change, check out the latest episode of Still Here, where I talk with Lorraine about her new book, "Body Weather: Body Weather: Notes on Chronic Illness in the Anthropocene" podcasts.apple.com/us/podcast/w...

Today in @thesicktimes.org: A new feature by Lorraine Boissoneault (@lodrinkswater.bsky.social) about how mold can trigger and worsen chronic illness. And how climate change could increase the risk of environmental exposures like mold. thesicktimes.org/2026/05/21/m...

💊 The antiviral ensitrelvir was found to prevent COVID-19 in people exposed to COVID-positive individuals 💷 The U.K. government announced £4.75 million in funding for ME study 👂 A new phase 2 trial is studying a compound for Long COVID related tinnitus Research updates: bit.ly/42PMTY7

Just saw this. So grateful that it was possible to debrief Moonshot a bit - that was good good work that still resonates, and it looked from here like it was costly for the people who did it.

"The first and last thing you need is luck Advocacy is a marathon made up of a thousand sprints. Pacing, especially if you have an energy-limiting disease, becomes ever more important. ...there will always be more advocacy work than you personally can do."

I love this! So much insight and actionable advice!

This week at The Sick Times, Lisa Kava shares a few things that she learned about advocacy during the #LongCOVID Moonshot. bit.ly/4nyX1Ok

What happens when your body and the climate break down at the same time? On Still Here (produced by @melaniemarich.bsky.social), @mileswgriffis.bsky.social talks to @lodrinkswater.bsky.social about her new book, Body Weather: Notes on Chronic Illness in the Anthropocene. bit.ly/4dlF3M1

Such a delight to talk to @thesicktimes.org about my book and to consider the myriad ways are bodies are connected to our environments. You can listen to the podcast episode here: thesicktimes.org/2026/05/18/w...

A “unifying” hypothesis of the mechanisms, triggers, and risk factors for myalgic encephalomyelitis (ME), is gaining support. Further evaluation and development of a potential drug depend on funding. bit.ly/4dsrTLN

“The key question is why this damage occurs in muscle,” Wirth said. In their hypothesis, he and Scheibenbogen identified disrupted ion exchange in muscle cells as the underlying cause." New science feature on ME by @martinruecker.bsky.social in TST 👀 thesicktimes.org/2026/05/14/b...

The Sick Times: 'Breaking the vicious cycle: How two German scientists seek to solve ME' Written by Martin Rücker 'A “unifying” hypothesis of the mechanisms, triggers, and risk factors for myalgic encephalomyelitis (ME), is gaining support.' thesicktimes.org/2026/05/14/b...

🧠 New study linked ongoing endothelial dysfunction in people with Long COVID with neuropsychiatric symptoms 🧸 Small study found nearly half of its pediatric participants met the diagnostic criteria for LC 💊 A clinical trial investigating rapamycin updated with open label extension bit.ly/3R62396

"Breaking the vicious cycle: How two German scientists seek to solve #ME" #MECFS - my latest article has just been published by @thesicktimes.org thesicktimes.org/2026/05/14/b...

Three of the five initial #LongCOVID clinical trials from the NIH RECOVER program have started sharing results, all finding the interventions they tested did not significantly improve symptoms compared to placebos. Read more from @betsyladyzhets.bsky.social: bit.ly/42BLCUr

To mark International Myalgic Encephalomyelitis (ME) Awareness Day, advocates participated in marches and "lie in" protests in 42 cities across Germany. The demonstrations drew over 12,000 people in person and 700 virtual participants. bit.ly/4ePzGpz

Read @betsyladyzhets.bsky.social’s impressively comprehensive review of the much less impressively comprehensive NIH RECOVER trials. There are a few promising tidbits, but people with Long Covid need options ASAP. thesicktimes.org/2026/05/12/r... @thesicktimes.org

The Sick Times: 'RECOVER’s first round of clinical trials are failing. Will the next phase be better?' Written by Betsy Ladyzhets thesicktimes.org/2026/05/12/r...

The Sick Times: 'Thousands “lie in” for German ME protests' Written by Heather Hogan thesicktimes.org/2026/05/12/t...

NEW: "We deserved much better, much earlier." RECOVER's first clinical trials are failing. And people with #LongCOVID say the federal research program ignored their concerns. One behavioral trial even tested...computer games. @betsyladyzhets.bsky.social's latest 👀 thesicktimes.org/2026/05/12/r...

Today is International ME Awareness Day 💙. Thousands gathered across 42 cities in Germany this weekend to make demands for research, support, & education. The mass "lie down" protest was organized by the group #LiegendDemo. 📝:@heatherhogan.bsky.social thesicktimes.org/2026/05/12/t...

Tesla @tesladrianne.bsky.social recently wrote an op-ed that's been published in @thesicktimes.org— sharing her frightful experience waking up to maskless phlebotomists after passing out. thesicktimes.org/2026/04/24/w... #MaskTogetherAmerica

We are getting closer to a test for Long COVID, but we are not there yet. And as researchers work to deliver on that promise, we also need to prepare for what that test won’t do. bit.ly/4d5lOGs

As one of the only newsrooms still reporting on the impact of the ongoing COVID-19 pandemic, we often get questions from readers about finding and interpreting data on COVID-19 and other pathogens. We hosted a free webinar to answer those questions! Watch the full event now! bit.ly/4niNHhF

This week's #LongCOVID research updates: thesicktimes.org/2026/05/05/r...

The Sick Times' executive editor @mileswgriffis.bsky.social spoke with the two organizations behind the viral moment where advocates interrupted speakers at the #LongCOVID EU Project event. bit.ly/4cXtNVY

So stoked to see people taking direct action for long covid and other chronic illness 🩵🙌

"We want real care, not cognitive behavioral therapy or meditation. We need medications for our lungs, hearts, stomachs, immune systems, [and] brains damaged by COVID." I love therapy, meditation, and yoga, but they're not the cure for Long Covid.

@milesklee.bsky.social spoke with the two organizations behind the viral moment where advocates interrupted speakers at the Long COVID EU Project event. thesicktimes.org/2026/05/05/l...

The Sick Times: 'Long COVID advocates demand biological research at a conference in Paris' 'We spoke with the two organizations behind the viral moment where advocates interrupted speakers at the Long COVID EU Project event' Written by Miles W. Griffis thesicktimes.org/2026/05/05/l...

On Emma Raducanu's prolonged post-viral symptoms, via @thesicktimes.org: thesicktimes.org/2026/04/28/p...

Today @thesicktimes.org: Advocates in France interrupted a recent Long COVID conference, calling for biological research, not “psychologization.” @mileswgriffis.bsky.social interviewed the organizations behind this action. thesicktimes.org/2026/05/05/l...

Long COVID advocates interrupted a recent research conference in Paris. We spoke with the two organizations behind the action that went viral on social media. "We will attack all the projects...that psychologize Long COVID," they said. thesicktimes.org/2026/05/05/l...

💔 Researchers found themes of clinical neglect and broad institutional failure in the written memorials of over 500 people who had ME 🩸 A new study found microclots in the blood of children with Long COVID 💊 A third cancer drug is being trialed for Long COVID This week's research: bit.ly/4tHfFpy

1/ Just a reminder that #LongCOVID is not functional neurological disorder ( #FND) - bsky.app/profile/thes...

Why is #LongCOVID so underreported worldwide? 🎧 In this week's Still Here (produced by @melaniemarich.bsky.social), Miles and Betsy speak with health journalist Jamie Ducharme about this issue. Also: South African advocate Mlindeni Gabela about fighting for diagnosis. bit.ly/429ozjx

The latest episode of #StillHere is out now! We spoke with reporter Jamie Ducharme about her feature on the underreporting of #LongCOVID around the world. The episode also features advocate Mlindeni Gabela, on the stigma of the disease in South Africa. thesicktimes.org/2026/04/30/p...

Professional tennis player Emma Raducanu has post-viral syndrome. After going public with her illness, commentators began offering terrible training advice to someone in a vulnerable and uncertain period of a viral illness. bit.ly/4uf4u7l