rorpreston.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

The case for ramping up ME/CFS research, through both public and private funding, is absolutely compelling 📈 Especially in light of the COVID-19 pandemic, which has significantly worsened this humanitarian crisis happening under our noses A visual thread 🧵

submitted 11 days ago • 2 comments

The case for ramping up ME/CFS research, through both public and private funding, is absolutely compelling 📈 Especially in light of the COVID-19 pandemic, which has significantly worsened this humanitarian crisis happening under our noses A visual thread 🧵

submitted 11 days ago • 2 comments

A comparison of UK Government research funding for ME/CFS compared to other diseases like MS, IBD and Parkinson's 🧐 @nihr.bsky.social and @ukri.org we need ring-fenced funding for ME as part of the Delivery Plan Thank you to @mediumwhite.bsky.social & co. for analysis #MECFS #NHS

submitted 12 days ago • 6 comments

New chart from @crunchme.bsky.social showing just how low NIH funding levels for ME/CFS & Long Covid are compared to disease burden 🔍 $14 and $62 per disability adjusted life year (DALY respectively) #MECFS #LongCovid

submitted 18 days ago • 0 comments

Cure ME/CFS caps getting out there to help spread awareness + spark conversation 🔥 If you wanna, you can get yours here 👇 yewjk2-s6.myshopify.com #MECFS #LongCovid

submitted 21 days ago • 1 comment

To help fund my work on @crunchme.bsky.social I'm selling 'Cure ME/CFS' caps! If you'd like to buy one, here is the link to my store: yewjk2-s6.myshopify.com Shipping only in the UK for now while I get the ball rolling! Only 5 left of this first batch 👀 #MECFS #LongCovid

submitted 24 days ago • 2 comments

This is such an incredibly critical paper and we need so much more of this #MenstruationScience to better understand #WomensHealth and illness!!! Thanks and congrats to all the authors! @rorpreston.bsky.social

submitted 26 days ago • 1 comment

Really chuffed to be a co-author on this paper (pre-print) via Visible & Imperial College 💙 Odds of a crash 45% lower during late luteal phase compared to peak during menstrual phase www.medrxiv.org/content/10.1... #MECFS #LongCovid

submitted 26 days ago • 0 comments

Your yearly reminder of how shockingly low the funding for MECFS research is.

submitted 27 days ago • 1 comment

A shameful lack of funding for an illness which studies have shown offers a significantly lower quality of life than people with cancer, multiple sclerosis, heart attack, or stroke. #MECFS #MyagicEncephalomyelitis #MedicalScandal

submitted 27 days ago • 0 comments

This visual shows UK gov funding levels for different diseases over time - analysis by @mediumwhite.bsky.social 💸 It shows how paltry funding for ME has been, especially considering that data from the US suggests the ME disease burden is larger than for the other 3 combined 😅 #MECFS #LongCovid

submitted 28 days ago • 3 comments

This visual shows UK gov funding levels for different diseases over time - analysis by @mediumwhite.bsky.social 💸 It shows how paltry funding for ME has been, especially considering that data from the US suggests the ME disease burden is larger than for the other 3 combined 😅 #MECFS #LongCovid

submitted 28 days ago • 3 comments

To advocates & policymakers in the #IACC space: Please check out this new report on data-driven insights and the case for much more attention on & funding for IACCs such as #MECFS & #LongCovid. Please share widely! So thankful to @mildtin.bsky.social for leading this incredible report 💙

submitted 31 days ago • 0 comments

Very excited to say that @crunchme.bsky.social's first report is out and about 🙌 The Future is a Policy Choice: Addressing Infection-Associated Chronic Conditions Our goal here is to bring together the key info needed to make the case for taking action now! drive.google.com/file/d/17fgU...

submitted 33 days ago • 3 comments

I’ll be reading this in its entirely today, @crunchme.bsky.social! Thanks so much! #mecfs #millionsmissing

submitted 32 days ago • 0 comments

Really great document, policy-oriented. Every slide is comprehensive, up to date, extremely clear in argumentation, great referencing... Hopefully LOTS of MPs, MEPs and policy-makers will have access to it 👏📌 THANK YOU @mildtin.bsky.social via @crunchme.bsky.social & @rorpreston.bsky.social

submitted 32 days ago • 0 comments

Vitally important report from @crunchme.bsky.social on Addressing Infection Associated Chronic Conditions "It brings together much of the key information needed to help bring policymakers up to speed on these conditions - including #LongCovid, #ME/CFS, #POTS"

submitted 32 days ago • 2 comments

This is a hugely important paper particularly for policymakers on #ME #LongCovid Thanks to all who worked on it. Please #pwME pass it round. Let’s get this scientific evidence out 🔥

submitted 32 days ago • 0 comments

Very excited to say that @crunchme.bsky.social's first report is out and about 🙌 The Future is a Policy Choice: Addressing Infection-Associated Chronic Conditions Our goal here is to bring together the key info needed to make the case for taking action now! drive.google.com/file/d/17fgU...

submitted 33 days ago • 3 comments

First batch of stock has arrived, online store coming soon! ✌️💙

submitted 33 days ago • 1 comment

Anybody in the #ME tech/app field looking for an ME and #LongCovid informed (though not #pwME themselves ) full stack web developer to join the team? @rorpreston.bsky.social

submitted 35 days ago • 0 comments

Has anyone had any positive experiences with specialist clinicians or clinics for ME/CFS, Long Covid, POTS, Chronic Lyme or other IACCs? Please shout them out below! Want to make sure our Clinics database in CrunchME reflects community experience! 🩺 crunchme.notion.site/clinics

submitted 35 days ago • 7 comments

We've updated the @crunchme.bsky.social scientific conferences & events table with so-far announced details of 2025 events 📅 So if you're wondering what events lie ahead, check it out! Also includes links to recording from the previous event where available crunchme.notion.site/conferences

submitted 38 days ago • 0 comments

An overview of where clinical treatment trials are happening for Long Covid, ME/CFS and other IACCs - according to the @wecrunchme database 🌎 🥇 = USA 🥈 = Germany 🥉 = Canada & UK Imo international gov discussion on funding is critical to encourage smaller nations!

submitted 41 days ago • 3 comments

It's encouraging to see there has been a significant uptick in the number of biomarker & diagnostic projects for ME/CFS & Long COVID 📈🔬 crunchme.notion.site/biomarkers Note: year relates to publication date if available, initiation date otherwise. Please let us know if we're missing any! 🙏

submitted 44 days ago • 0 comments

Thanks to @mildtin.bsky.social, who I'm delighted to say has joined CrunchME as a volunteer contributor, our Biomarkers & Diagnostics Projects table has received a serious refresh 💅 We now have 29 projects listed in there, with 19 of them ongoing. Check it out 👇 crunchme.notion.site/biomarkers

submitted 47 days ago • 0 comments

One of our volunteer contributors at CrunchME, Fiona, has done a brilliant job refreshing our Politicians table after the latest UK election 💼 crunchme.notion.site/politicians If you know of any IACC supporters amongst politicians in your country not listed, please let us know! #MECFS #LongCovid

submitted 49 days ago • 1 comment