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Ror Preston @rorpreston.bsky.social · 08/04/2025

Sorry for v slow reply - the Long COVID bar is an estimate from ourselves, particularly @mildtin.bsky.social It is taken from our report The Future is a Policy Choice, which can be found on our website This tweet shows a screenshot of the logic - hope this helps! x.com/RorPreston/s...

x.com

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The Sick Times @thesicktimes.org · 12/03/2025

This week at The Sick Times, @rorpreston.bsky.social shares why he founded CrunchME, a new patient-led organization seeking to compile evidence and accelerate research on ME, Long COVID, and other Infection Associated Chronic Conditions (IACCs). bit.ly/4hvBUrw

Photo of Rory Preston with a black and white filter, in front of a blue background with white strings of code and a design evoking biochemistry diagrams. The text reads, “The Sick Times. Accurate statistics for ME and Long COVID are vital. That’s why I started a patient-led organization to “crunch” the diseases. By Rory Preston.”

Since falling ill with myalgic encephalomyelitis (ME) in 2018, it has frustrated me greatly seeing organizations and especially governments repeating out-of-date statistics related to this disease — minimizing either the apparent number of sufferers (such as the much-repeated 250,000 figure for the number of ME patients in the UK) or our degree of suffering. This knowledge gap has been compounded by the COVID-19 pandemic, which has been shown to significantly increase the number of ME cases. - Rory Preston, Data scientist and founder of CrunchME

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Ror Preston @rorpreston.bsky.social · 08/04/2025

This is awesome to hear! We actually do have a way - I set up a Ko-Fi page which enables regular giving, and now goes straight to the CrunchME organisation bank account ko-fi.com/rorpreston

ko-fi.com

Support Rory Preston (CrunchME)

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Ror Preston @rorpreston.bsky.social · 08/04/2025

Thank you so much Michiel, really appreciated 😊🙌

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Michiel @murtoz.bsky.social · 30/03/2025

I wanted to call out @rorpreston.bsky.social and his team of volunteers, for their brilliant work in gathering all the facts and figures about #ME/CFS and #LongCovid in one place over at www.crunchme.org If you can afford to, please consider donating: gofund.me/2b3d5185

crunchme.org

CrunchME

The evidence and insight base to crunch infection-associated chronic illnesses.

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CrunchME @crunchme.bsky.social · 07/04/2025

As our Clinical Trials database continues to grow, we will be spotlighting some of the treatments being tested around the world, for Long COVID, ME/CFS & other IACCs 💊 Thank you to @mildtin.bsky.social, our clinical trials lead, for putting these together! A visual thread 🧵 #MECFS #LongCovid

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Ror Preston @rorpreston.bsky.social · 06/03/2025

Currently shipping to UK and USA - will be adding EU countries soon, but need to sort out import VAT tax handling (🥱)

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Ror Preston @rorpreston.bsky.social · 06/03/2025

I have now added some new caps to the Against ME & Co. line up 🧢 We have 'Cure Long Covid' in faded pink and red lettering, and 'Cure POTS' in faded navy and pink lettering If you'd like one, you can get there here 🔗 yewjk2-s6.myshopify.com Thank you for your support! #MECFS #LongCovid #POTS

Pink cap with red text saying 'Cure Long Covid'

Navy cap with pink text saying 'Cure POTS'

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Ror Preston @rorpreston.bsky.social · 18/02/2025

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 🧵

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Ror Preston @rorpreston.bsky.social · 18/02/2025

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Ror Preston @rorpreston.bsky.social · 16/02/2025

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

Area chart showing ME funding (£6m) vs. MS, IBD and Parkinson's by the UK Government, 2015-20

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Ror Preston @rorpreston.bsky.social · 10/02/2025

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

Bar chart showing the NIH funding level per DALY by disease, with Long Covid and ME/CFS at the bottom

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Ror Preston @rorpreston.bsky.social · 07/02/2025

Shall give Claude another crack then! Thx

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Ror Preston @rorpreston.bsky.social · 07/02/2025

Which are your favourites? Claude I can't get over how passive aggressive it got when I made a couple of typos 😂 'You will notice the correct spelling of...'

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Ror Preston @rorpreston.bsky.social · 07/02/2025

Currently shipping to UK only, but looking to expand this soon

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Ror Preston @rorpreston.bsky.social · 07/02/2025

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

Woman wearing black cap saying Cure ME/CFS

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Ror Preston @rorpreston.bsky.social · 04/02/2025

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

Black cap saying 'Cure ME/CFS' on the front, church and people in the background

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Michal Caspi Tal, PhD @immunofever.bsky.social · 02/02/2025

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

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Ror Preston @rorpreston.bsky.social · 02/02/2025

Working on it, but I can say from data from the US (which is what we have) suggests the disease burden of ME/CFS is just about larger than that of MS, Parkinson's and IBD *combined* In terms of DALYS (disability adjusted life years) So yeh, it's mega underfunded

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It's Not All About ME @clairemyfanwy.bsky.social · 02/02/2025

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

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traceydooley.bsky.social @traceydooley.bsky.social · 01/02/2025

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

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Ror Preston @rorpreston.bsky.social · 01/02/2025

Big up Anatol and Simon 🤝

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Ror Preston @rorpreston.bsky.social · 01/02/2025

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

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Ror Preston @rorpreston.bsky.social · 01/02/2025

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Elke Asen @elkeasen.bsky.social · 28/01/2025

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 💙

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Ror Preston @rorpreston.bsky.social · 27/01/2025

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...

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Ror Preston @rorpreston.bsky.social · 27/01/2025

Thanks so much for sharing 😊

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Jess Badger @jesshoneybadger.bsky.social · 27/01/2025

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

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Didier @medidier.bsky.social · 27/01/2025

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

A screenshot of policy paper by CrunchME, highlighting the written section about how the 21st century is the Biology's Century, stating the many radical advances in Medicine, notably in ailments that were long considered incurable or 'unexplained'.

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Katy B @katybrc.bsky.social · 27/01/2025

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"

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Carole Bruce @cabruce.bsky.social · 27/01/2025

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 🔥

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Ror Preston @rorpreston.bsky.social · 27/01/2025

Credit for this one goes first and foremost to @mildtin.bsky.social 😊

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Ror Preston @rorpreston.bsky.social · 27/01/2025

@mildtin.bsky.social has led the work on this, and we're incredibly grateful to her to the level of research that has gone into this report 🙏 We hope it will be of great use to both patient advocates, and to policy makers working across ME/CFS, Long Covid and other IACCs Please do share! 💙

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Ror Preston @rorpreston.bsky.social · 27/01/2025

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Ror Preston @rorpreston.bsky.social · 26/01/2025

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

Black caps with Cure ME/CFS in white on front

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Ror Preston @rorpreston.bsky.social · 25/01/2025

Thank you! We've got them on the list ✅

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