Ror Preston
@RorPrestonLead Data Scientist @visible_health 💙 | Organiser @wecrunchme 🗺️ | "Relatively frightening levels of perseverance" - a former colleague
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I really do believe Long Covid studies identifying patients who also meet the ME/CFS criteria - creating a post-Covid ME cohort - is a serious win-win It will likely help make LC analysis far more insightful, and also have a majorly uplifting effect on the ME literature #MECFS…
Awesome to see tools like this being built! This is another, and slightly different way, to contribute to progress in Long Covid (and hopefully other IACC in future!) than charitable donations So please check out this Crowdfunder if you're able and interested 👏 #LongCovid…
🌟 We’re creating a platform to provide treatment options for Long Covid, informed by the community’s experiences and clinicians’ insights. Today, we’re launching our 2024 crowdfunder to make it happen! Learn more below and support us at longcovidtoolkit.org/give. 💙 #LongCovid
I've just created a Bluesky account at @rorpreston.bsky.social 🦋 Please give me a follow there! And if anyone would like to add me to one of the starter packs for ME/CFS, Long Covid and IACC, I would appreciate it a lot 🥰 #MECFS #LongCovid #ChronicLyme
Walter Koroshetz dangling Long COVID as the ‘golden ticket’ for #MECFS patients is peak insincerity. Don’t buy it. We must focus on securing dedicated annual funding for ME/CFS. WK and NIH keep saying ‘nobody could have predicted LC’ and ‘it’s the same as ME’ at the same time.
Koroshetz: "This is not a rare event now in the general theme of infection leading to these kind of symptoms that persist...for years so...now we got to figure out...the good news for ME/CFS is Long COVID completely changed the ball game...I think we have a golden opportunity..."
Thank you! Would be great to see more #pwme getting involved with low energy fundraising to help drive forward the research we all desperately need!
I really do believe Long Covid studies identifying patients who also meet the ME/CFS criteria - creating a post-Covid ME cohort - is a serious win-win It will likely help make LC analysis far more insightful, and also have a majorly uplifting effect on the ME literature #MECFS…
Your moral principles and your economic interests won't always be aligned. What you do when they're not is a test of character.
Incredible work by @weandmecfs (again!) raising EUR 76k for ME/CFS research 💙💪 #MECFS #LongCovid #PAIS
Bei der ART&ANTIQUE HOFBURG Vienna sind 76.480 Euro zusammengekommen, die der Grundlagenforschung im Bereich ME/CFS zugutekommen! Sechs Kunstwerke von Künstlern wie Marc Chagall, Kiki Kogelnik, Hans Staudacher und anderen wurden von Kunsthändlern zur Verfügung gestellt, zugunsten…
As a result of long, hard & effective campaigning by #MEAction Scotland the lack of services for people with ME in Scotland is finally being highlighted. ow.ly/Wfup50U48Tk @BenMacpherson #MyalgicEncephalomyelitis #VerySevereME
Great to see one of the leading researchers into #LongCovid pulling our a cohort specifically on covid-triggered ME/CFS 💪💙 Imo other researchers in the field should take note of this!!! Should help advance both ME & LC research faster
Lots of attention on cortisol in #LongCovid lately. Here are results from a pilot project in the @UCSF #LIINC cohort. Similar levels between LC and recovered, but morning dynamics appear to differ, esp. in those with post-COVID ME/CFS. Detailed follow up project ongoing.
Placebo controlled trial will be started in Jan 2025! People can use device from home, and use on daily basis. 4 weeks, and reassess baseline. See if any improvement, and if it sustains afterwards. /164
The predators of nations are uniting despite their enormous differences in ideology. Their victims and opponents are busy denigrating and abandoning each other, citing trivialities that are irrelevant by comparison.
To any fans of Dianna who want to help get her back to life through biomedical research, please consider donating to @OpenMedF & @polybioRF! This month, any donations to Open Medicine Foundation will be *tripled* by a matching donor Thank you 💙
Two years ago today. Note the washed hair. 😭 I just want to walk. And take a shower.
Keynote talk by @MichaelPelusoMD “#LongCovid is not a mystery anymore. Working with patients, I have optimism that we can figure this out.” #YaleCIISymposium
Very excited to hear updates from PolyBio on their research on #LongCovid & hopefully #MECFS too!!
It’s time! Our Fall Symposium is tomorrow, November 8th, at 11 AM EST. If you haven’t had the chance yet, sign up now to secure your spot. We’re looking forward to sharing our project updates! polybio.org/fall-2024-symp…
Some positive news from the @ActionforME Annual Report: they took on a public affairs agency (aka lobbyist). That helps professionalise the work to engage MPs. Link to the Annual Report can be seen below, and the AGM is also available. Do read / watch them.
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