Ror Preston
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rorpreston.bsky.social
Ror Preston
@rorpreston.bsky.social
1.6K followers 410 following 150 posts
Founder @ CrunchME | Creating the evidence & insight base to crunch infection-associated chronic conditions 💙

#MECFS #LongCovid #IACC #PAIS

📍 https://crunchme.org/
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rorpreston.bsky.social
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
April 8, 2025 at 3:31 PM
rorpreston.bsky.social
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
Support Rory Preston (CrunchME)
Support Rory Preston (CrunchME)
ko-fi.com
April 8, 2025 at 3:27 PM
rorpreston.bsky.social
Thank you so much Michiel, really appreciated 😊🙌
April 8, 2025 at 3:25 PM
rorpreston.bsky.social
Currently shipping to UK and USA - will be adding EU countries soon, but need to sort out import VAT tax handling (🥱)
March 6, 2025 at 6:30 PM
rorpreston.bsky.social
In real life shot!
Woman dressed in a pink jumper, with pink cap saying 'Cure Long Covid' in red lettering
March 6, 2025 at 6:29 PM
rorpreston.bsky.social
@georgemonbiot.bsky.social in case this is useful for your writing!
February 18, 2025 at 5:23 PM
rorpreston.bsky.social
February 18, 2025 at 2:20 PM
rorpreston.bsky.social
Examples can be found through the Open Medicine Foundation & PolyBio Research Foundation in the USA, and ME Research UK in the UK - amongst many others. The goal must be harnessing this research to develop treatments for people desperately in need.
February 18, 2025 at 2:20 PM
rorpreston.bsky.social
These include autonomic nervous system dysfunction, cardiac pre-load failure & significantly reduced oxygen extraction, the presence of micro-clots in the blood, and a complete lack of metabolic adaption to exercise. ME/CFS research is inherently multi-disciplinary, and provides an incredible opportunity to understand how different systems within the body interact.
February 18, 2025 at 2:20 PM
rorpreston.bsky.social
Mirin et al. (2022) estimate the annual economic burden of ME/CFS in the US has increased from $44bn pre-Covid, to $255bn now - a nearly 6-fold increase. Studies so far suggest around 25-50% of Long Covid patients meet the diagnostic criteria for ME/CFS.
February 18, 2025 at 2:19 PM
rorpreston.bsky.social
A study by Mirin et al. (2022) found that NIH funding in the US to be 3% of the level required to be commensurate with similarly burdensome diseases. This is a picture that is mirrored around the world.
February 18, 2025 at 2:16 PM
rorpreston.bsky.social
A study by Hvidberg et al. (2015) found ME/CFS to have the worst health-related quality of life for any illness group, including cancers, sclerosis, and chronic renal failure. Life is worse still for people at the severe end of the ME/CFS spectrum.
February 18, 2025 at 2:15 PM
rorpreston.bsky.social
Shall give Claude another crack then! Thx
February 7, 2025 at 6:41 PM
rorpreston.bsky.social
Le Chat is a great name
February 7, 2025 at 6:26 PM
rorpreston.bsky.social
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...'
February 7, 2025 at 6:25 PM
rorpreston.bsky.social
Currently shipping to UK only, but looking to expand this soon
February 7, 2025 at 3:07 PM