Tessera

Ror Preston @rorpreston.bsky.social · last yr.

Thanks so much Christophe!

The Sick Times @thesicktimes.org · last yr.

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encephalomyelitis (ME) in 2018, it has frustrated me greatly seeing organizations and especially governments repeating out-of-date statistics related to this disease — minimizing either the apparent number of sufferers (such as the much-repeated 250,000 figure for the number of ME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

Michiel @murtoz.bsky.social · last yr.

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

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

crunchme.org

CrunchME @crunchme.bsky.social · last yr.

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

Ror Preston @rorpreston.bsky.social · last yr.

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'

Ror Preston @rorpreston.bsky.social · 2y ago

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 🧵

Ror Preston @rorpreston.bsky.social · 2y ago

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 🧵

Ror Preston @rorpreston.bsky.social · 2y ago

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

Ror Preston @rorpreston.bsky.social · 2y ago

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

Ror Preston @rorpreston.bsky.social · 2y ago

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

Ror Preston @rorpreston.bsky.social · 2y ago

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

Michal Caspi Tal, PhD @immunofever.bsky.social · 2y ago

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

Ror Preston@rorpreston.bsky.social · 2y ago

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

Ror Preston @rorpreston.bsky.social · 2y ago

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

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...

medrxiv.org

It's Not All About ME @clairemyfanwy.bsky.social · 2y ago

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

Ror Preston@rorpreston.bsky.social · 2y ago

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

@traceydooley.bsky.social · 2y ago

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

Ror Preston@rorpreston.bsky.social · 2y ago

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

Ror Preston @rorpreston.bsky.social · 2y ago

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

Ror Preston @rorpreston.bsky.social · 2y ago

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

Elke Asen @elkeasen.bsky.social · 2y ago

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 💙

Ror Preston@rorpreston.bsky.social · 2y ago