iiinova — where your digital self keeps evolving

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 · 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

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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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 · 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 · 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 · 18/01/2025

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!

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Ror Preston @rorpreston.bsky.social · 15/01/2025

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! 🙏

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Ror Preston @rorpreston.bsky.social · 07/01/2025

This is what we've got in these countries currently

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Ror Preston @rorpreston.bsky.social · 31/12/2024

I have found Our World in Data have an estimate based on excess mortality, and I've used their central estimate I have also put a note underneath to state I know this is not a direct like-for-like comparison, but still serves a useful illustrative purpose imo

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Ror Preston @rorpreston.bsky.social · 31/12/2024

I think this chart is a stark reminder, or informant to many outside our community, that the COVID pandemic *isn't just* about deaths and acute illness. The shadow COVID casts is long indeed 😮

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Ror Preston @rorpreston.bsky.social · 28/12/2024

I think this chart really captures the extent to which we need to bend the curve upwards on IACC funding 📈 I call the gap between MS (an underfunded disease) and HIV/AIDS (a highly funded disease) the 'cone of attention' that ME/CFS, Long Covid etc need to push into. crunchme.org 🔗

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Ror Preston @rorpreston.bsky.social · 28/12/2024

Once on there, on the top left you can see the path you've taken (called 'breadcrumbs') and if you click on the CrunchME word it'll take you back to the homepage Does that help for now?

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Ror Preston @rorpreston.bsky.social · 28/12/2024

However, if you go to the homepage and scroll down you can see all the tables we currently have in the ecosystem database, and click through on any of them 2/

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Ror Preston @rorpreston.bsky.social · 26/12/2024

Remarkable to see the lack of attention to MCAS (Mast Cell Activation Disorder) within the current context of Long Covid research funding 👀 Given quite a lot of pwLC on here seem to struggle with it - and it can cause rapid deteriorations - deserves more attention? crunchme.org 🔗 #LongCovid #MCAS

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Ror Preston @rorpreston.bsky.social · 06/12/2024

I want to share the intro to CrunchME's fundraising pitch with the community, as I think it most clearly communicates what we're doing and why! 💙 www.loom.com/share/9c5988... #MECFS #LongCovid #PAIS

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Ror Preston @rorpreston.bsky.social · 26/11/2024

A sneak peak of what will be trending in 2025 🧢 #MECFS #LongCovid #IACC

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Ror Preston @rorpreston.bsky.social · 20/11/2024

A reminder that if you're feeling saddened by the failure of the Berlin Cures trial for Long Covid, you can check out the pipeline of #LongCovid, #MECFS & other IACC clinical trials here on CrunchME 💊👇 Just added a bunch more, and more to add still! crunchme.notion.site/4d00e39f9f87...

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Ror Preston @rorpreston.bsky.social · 17/11/2024

It's amazing to me that Visible has now hit well over 100k downloads 😮 I certainly hope it helps send a message to private investors & markets that ME/CFS, Long Covid & other IACCs are big populations worthy of attention + innovation

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Ror Preston @rorpreston.bsky.social · 16/11/2024

Here you can see the almost Art Nouveau-like framework on the inside!

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Ror Preston @rorpreston.bsky.social · 16/11/2024

Just received my Zimi Air respirator - I'm really impressed 🤩👏 It has a plastic framework that keeps the filter away from your face, so it's very comfortable. Adjustable ear loops, and a great fit for such a mask! zimiair.com/shop/ #MECFS #LongCovid #pwME

Man indoors in a black hoodie wearing a white respirator with earloops, by Zimi Air

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