Ror Preston
@rorpreston.bsky.social
Founder @ CrunchME | Creating the evidence & insight base to crunch infection-associated chronic conditions 💙
#MECFS #LongCovid #IACC #PAIS
📍 https://crunchme.org/
#MECFS #LongCovid #IACC #PAIS
📍 https://crunchme.org/
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
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
March 6, 2025 at 6:28 PM
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
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, 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 🧵
Especially in light of the COVID-19 pandemic, which has significantly worsened this humanitarian crisis happening under our noses
A visual thread 🧵
February 18, 2025 at 2:14 PM
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 🧵
Especially in light of the COVID-19 pandemic, which has significantly worsened this humanitarian crisis happening under our noses
A visual thread 🧵
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
@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
February 16, 2025 at 7:37 PM
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
@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
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
$14 and $62 per disability adjusted life year (DALY respectively)
#MECFS #LongCovid
February 10, 2025 at 8:48 PM
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
$14 and $62 per disability adjusted life year (DALY respectively)
#MECFS #LongCovid
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
If you wanna, you can get yours here 👇
yewjk2-s6.myshopify.com
#MECFS #LongCovid
February 7, 2025 at 3:06 PM
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
If you wanna, you can get yours here 👇
yewjk2-s6.myshopify.com
#MECFS #LongCovid
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
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
February 4, 2025 at 8:17 PM
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
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 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
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
February 1, 2025 at 11:22 AM
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
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
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...
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...
January 27, 2025 at 2:11 PM
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...
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...
First batch of stock has arrived, online store coming soon! ✌️💙
January 26, 2025 at 3:38 PM
First batch of stock has arrived, online store coming soon! ✌️💙
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!
🥇 = USA
🥈 = Germany
🥉 = Canada & UK
Imo international gov discussion on funding is critical to encourage smaller nations!
January 18, 2025 at 4:44 PM
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!
🥇 = USA
🥈 = Germany
🥉 = Canada & UK
Imo international gov discussion on funding is critical to encourage smaller nations!
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! 🙏
crunchme.notion.site/biomarkers
Note: year relates to publication date if available, initiation date otherwise.
Please let us know if we're missing any! 🙏
January 15, 2025 at 4:50 PM
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! 🙏
crunchme.notion.site/biomarkers
Note: year relates to publication date if available, initiation date otherwise.
Please let us know if we're missing any! 🙏
This is what we've got in these countries currently
January 7, 2025 at 9:05 PM
This is what we've got in these countries currently
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
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
December 31, 2024 at 4:55 PM
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
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
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 😮
The shadow COVID casts is long indeed 😮
December 31, 2024 at 3:02 PM
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 😮
The shadow COVID casts is long indeed 😮
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 🔗
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 🔗
December 28, 2024 at 9:13 PM
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 🔗
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 🔗
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?
Does that help for now?
December 28, 2024 at 11:28 AM
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?
Does that help for now?
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/
December 28, 2024 at 11:27 AM
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/