It would be difficult to design a condition that causes as much suffering as #MECFS while demanding any less attention from policymakers & the general public. I describe why in this open letter to friends & family that touches on my 6 year journey: medium.com/@winstoncb/a-life… #pwME

The current studies on skeletal muscle and mitochondrial damage in PCS and MECFS represent an important advance in our understanding and can explain exercise intolerance and PEM. Review together with Klaus Wirth@mitodicure dx.doi.org/10.1002/jcsm.1366…

youtu.be/ixroy2Xsbyg?si=8vQt… by Meagan Hughes, @giorgialupi, Lucy Little

The latest paper from the Cornell Center is available at the PNAS website. Our study implicates T cell exhaustion in ME/CFS.

1. Abuse and harassment are never acceptable. But this is not the first time I’ve seen an emphasis on abuse and harassment shielding bad science. This is a short thread on how it works. theguardian.com/commentisfre…

Thinking about the issues listed in this thread, it seems to me that there's a strong case for a public inquiry into the chronic mistreatment of people with ME/CFS.

This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients. Please read and pass on. This horror has to stop. theguardian.com/commentisfre…

We continue to make good progress on the Rapamycin trial. I’m so thankful to the participants. You can’t do this kind of research without their guidance and participation. The quote below is one of many. Not everyone will respond. This isn’t my first rodeo. Our goal is biomarker directed clinical trials—like we are doing now. Understanding responders to therapy will help the field of #MECFS and #LongCovid. Thanks to our collaborators @GrachStephanie @CornellMECFS @BatemanHorne David Kaufman MD, Bela Chheda MD, Dan Peterson MD and Jon Berner MD. “I am a responder to the rapamycin. I am not sure if the details are of any interest or maybe helpful to the research but I’ll include a few. The next day after taking my first dose, I noticed immediately I was able to retain twice the amount of water I usually do (I have a schedule of water and salt intake for POTS). For the next four days I incrementally felt this sensation of blood returning to my brain, kind of like when your arm falls asleep and it feels tingly when it “wakes up”. I was 100% bedbound before starting and now I can sit at my desk for 4 hours. I will be attempting more movement here shortly. The RELIEF in my brain is astronomical. My anhedonia and dissociation has hugely improved, I can feel some emotions again from my memories.” Thanks for your support of @RedefiningMECFS

I'm proud to join @SenSanders and @RepPressley in the fight against Long COVID. The Long COVID Research Moonshot Act will allocate $10 billion to accelerate research and improve treatment of long COVID. We can't ignore this public health emergency. motherjones.com/politics/202…

Update from Ron Davis at the @Invest_in_ME conference... They're genetically engineering zebra fish so that the itaconate shunt is triggered - what they believe may be going on in ME/CFS 🐟🤯 The fish swim slowly as expected, and they're now using this as a model to work out how to unblock this metabolic trap. #MECFS #LongCovid youtube.com/watch?v=ijkCw7Ve…

PolyBio Research Foundation is excited to announce a $1M donation to UCSF.  The donation will allow the UCSF LIINC team to study #ME/CFS patients with advanced technologies, several of which have never yet been used in the field: polybio.org/1m-polybio-donat…

My Statement on the introduction of the Long COVID Research Moonshot Act #LongCovidMoonshot I fully support this bill and urge the U.S. Congress and our community to support it. Short thread:

For too long, millions of Americans suffering from long COVID have had their symptoms dismissed or ignored – by the medical community, by the media, and by Congress. Unacceptable. Congress must act now. Yes. It is time for a Long Covid Moonshot.

We are excited to have supported this new study via our #LongCovid Research Consortium.  The project team are our incredible @CUBoulderBN colleagues at the University of Colorado Boulder: polybio.org/multiple-hit-mod…

This is our next big #MECFS study in preparation, led by my colleague Prof. Shuzhao Li (& my office neighbor☺️) @jacksonlab & by a very talented young scientist, @MinghaoGongD960 It is focused on metabolites & imo, will have tremendous impact on identifying actionable targets!

1/ This is a major -and hopefully exciting- update on the use of #AI and #networkanalysis methods to research #MECFS. As new research was becoming available, it was sent to the #AI framework in order to identify most promising research targets. Here are the results :