Ror Preston

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...

Thanks so much Christophe!

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encephalomyelitis (ME) in 2018, it has frustrated me greatly seeing organizations and especially governments repeating out-of-date statistics related to this disease — minimizing either the apparent number of sufferers (such as the much-repeated 250,000 figure for the number of ME patients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

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

Support Rory Preston (CrunchME) Support Rory Preston (CrunchME)

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

Thank you so much Michiel, really appreciated 😊🙌

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

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

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

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

Woman dressed in a pink jumper, with pink cap saying 'Cure Long Covid' in red lettering

In real life shot!

Pink cap with red text saying 'Cure Long Covid'

Navy cap with pink text saying 'Cure POTS'

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

The Case for Ramping up ME/CFS Research

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 🧵

@georgemonbiot.bsky.social in case this is useful for your writing!

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.

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.

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.

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.

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.

The Case for Ramping up ME/CFS Research

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 🧵

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

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

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

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

Shall give Claude another crack then! Thx

Le Chat is a great name

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...'

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

Woman wearing black cap saying Cure ME/CFS

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

Thank you 😌

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

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

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

Digital health app data reveals an effect of ovarian hormones on long COVID and myalgic encephalomyelitis symptoms Background Long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) disproportionately affect females, suggesting modulation by sex hormones. We sought to investigate whether symptom...

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