When organisations fund ‘women’s health’ ME/CFS should be a priority and included in this funding. The Gates Foundation have generously allocated £2.5b to women’s health recently, it is imperative they expand scope to include ME/CFS

1) Saw some skepticism about DecodeME, asking if it is overhyped. As an account that focuses on dissecting and critically analyzing research (our name was 'ME/CFS Skeptic' for a reason!), we think it’s the real deal. Here are a couple of reasons why it stands out. 🧵

Paul Graham You can also see the size of the long shadow being cast by COVID in the form of post-infectious illness This is from CrunchME, using data from Our World in Data & a paper published in Nature

Incredibly exciting diagnostic tool potential — Michal Tal, PhD MIT team is doing nailfold capillaroscopies on #LongCovid patients before and after a NASA lean test, and said the results have been incredibly striking compared to controls. My results were very abnormal !

I'm currently thinking through next steps for work life (remote, flexible with moderate ME) 💙 I have significant experience as a data scientist, data engineer, and developing data-intensive software in tech - inc. as previous data science lead at Visible 1/

Really pleased to say our CrunchME video series on ME is now available as a single ~ 15 min video on our YouTube channel 🙌 Hopefully a v digestible but thorough introduction for sharing youtu.be/VCiVZZnEsVU?si… #MECFS #LongCovid

You can learn more about capillaroscopy and how it's being used in our clinical study MAESTRO, as well as other technologies in these short explainer videos by Caleb Rother, and undergraduate researcher in my lab: youtube.com/channel/UCgDOQ…

PEM is dangerous. Its not just a few symptoms getting worse and they resolve in a few days. People die from crashing, their GI system shuts down and they can no longer eat. I lost 20 KGs in 2020 after I caught Covid and the ensuing crash and was lucky to survive.

Honestly, I don’t see how I could ever trust a PT to monitor my PEM threshold when I myself don’t even know my PEM threshold. It seems to change constantly based on where I am in my menstrual cycle, how the weather is, etc.

What? We have a person who can't shower, can't look after themselves, can barely move but we are putting in exercise into the mix? This person is likely in rolling PEM.