Winston Blick

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: @winstoncb/a-life-changing-illness-73c9a131acb" target="_blank" rel="nofollow noopener">medium.com/@winstoncb/a-l… #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.1…

youtu.be/ixroy2Xsbyg?si… 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/commentisfree/…

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/commentisfree/…

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

@inktvisje575 Good point, and it may turn out to be more than analogy if something broken in the body’s natural post-exertional healing process is implicated as a driver of PEM.

@winstoncb I explain it like sore muscles to healthy people, everyone has experienced that. You don't notice while you are active, you notice the next day only.

As hard as it is to understand exertion intolerance in ME/CFS, it takes another full leap to grasp that over-exertion can reduce the threshold of what qualifies as exertion.

@LizThatGirlCA IMO the fact that few recover but a few do recover, even from a bedbound state, is the best rationale for developing treatments for this condition. We have little evidence of ME/CFS being strictly progressive or causing irreversible damage.

The onwardly downward, downward direction of this graph leads me to ask: does no one recover from this disease? This animation makes it look 100% terminal 😞Is that your belief? Where is the hope?

@thinkbynumbers The longer answer is ME/CFS research is extraordinarily underfunded and few such studies exist. So for now you mainly have the experiences of people with the condition to go off of, many of whom report long-term decline in their baseline following periods of over-exertion.

@thinkbynumbers The short answer is you’ll know. You can be mindful of the possibility that new/worse symptoms appearing hours or 24–48h following exertion could be caused by it. Back off from levels of exertion that cause “crashes”. All easier said than done.

A German translation is also now available: • Mobile-friendly: drive.google.com/file/d/1V1WVgN… • Standard: drive.google.com/file/d/1qTCIdt… • Instagram: instagram.com/reel/DApcXtPJQ… • YouTube: youtu.be/MItnlGAuWSQ?si… Thank you to @eskabadu and Claudia from @MMissingGermany for the translation.

For advocacy, the animation above can be downloaded in several formats: drive.google.com/drive/folders/… See also: • YouTube: youtu.be/HIyHtGkV7G8?si… • Instagram: instagram.com/reel/DAoCga6Px… • Facebook: facebook.com/reel/105085741… Sincere gratitude to Andrew Vickers for composing the music.

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/2024/…

@ValeBodi @DafoeWhitney :) can confirm am not the mystery designer Great stuff Whitney 👏

@DafoeWhitney Thank you Whitney & maybe @winstoncb? 💙💙💙🙏🏻💙💙💙🫂💙💙💙

I made this graph showing the funding of ME/CFS compared to patients afflicted and other illnesses. Here’s a link to a printable version you can download to show family/friends/drs to help you advocate for your rights and educate the world.❤️ whitneydafoe.com/mecfs/funding/ #MECFS

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=ijkCw7…

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-don…