Ror Preston
@rorpreston.bsky.social
Founder @ CrunchME | Creating the evidence & insight base to crunch infection-associated chronic conditions π
#MECFS #LongCovid #IACC #PAIS
π https://crunchme.org/
#MECFS #LongCovid #IACC #PAIS
π https://crunchme.org/
Pinned
Ror Preston
@rorpreston.bsky.social
Β· Dec 2
So excited to finally see this study out in pre-print! This study is the largest of its kind to date: Using data from 4,244 people with #LongCOVID, #MECFS and other complex chronic illnesses, we took hundreds of thousands of data points across hundreds of
www.researchsquare.com/article/rs-5...
1/
www.researchsquare.com/article/rs-5...
1/
Smartphone-based monitoring of heart rate variability and resting heart rate predicts variability in symptom exacerbations in people with complex chronic illness
Background: Complex chronic conditions like Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome involve energy limitations and changes in heart rate variability (HRV) and resting heart r...
www.researchsquare.com
It's incredibly surreal to be a co-author on this fab paper, looking at predicting crashes with biometrics, with some of the biggest names in this field π€―
Using this work to improve the Visible morning stability algorithm has also been a big part of my last 6 months!
#MECFS #LongCovid
Using this work to improve the Visible morning stability algorithm has also been a big part of my last 6 months!
#MECFS #LongCovid
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...
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
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...
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!
April 8, 2025 at 3:28 PM
Thanks so much Christophe!
Reposted by Ror Preston
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
March 12, 2025 at 4:51 PM
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
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
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
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
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 ππ
April 8, 2025 at 3:25 PM
Thank you so much Michiel, really appreciated ππ
Reposted by Ror Preston
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
If you can afford to, please consider donating: gofund.me/2b3d5185
CrunchME
The evidence and insight base to crunch infection-associated chronic illnesses.
www.crunchme.org
March 30, 2025 at 4:51 PM
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
If you can afford to, please consider donating: gofund.me/2b3d5185
Reposted by Ror Preston
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 π
Thank you to @mildtin.bsky.social, our clinical trials lead, for putting these together!
A visual thread π§΅
#MECFS #LongCovid
Thank you to @mildtin.bsky.social, our clinical trials lead, for putting these together!
A visual thread π§΅
#MECFS #LongCovid
April 7, 2025 at 11:44 AM
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 π
Thank you to @mildtin.bsky.social, our clinical trials lead, for putting these together!
A visual thread π§΅
#MECFS #LongCovid
Thank you to @mildtin.bsky.social, our clinical trials lead, for putting these together!
A visual thread π§΅
#MECFS #LongCovid
Currently shipping to UK and USA - will be adding EU countries soon, but need to sort out import VAT tax handling (π₯±)
March 6, 2025 at 6:30 PM
Currently shipping to UK and USA - will be adding EU countries soon, but need to sort out import VAT tax handling (π₯±)
I have now added some new caps to the Against ME & Co. line up π§’
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 π
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 π
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 π§’
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 π
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 π
yewjk2-s6.myshopify.com
Thank you for your support!
#MECFS #LongCovid #POTS
Reposted by Ror Preston
The case for ramping up ME/CFS research, through both public and private funding, is absolutely compelling π
Especially in light of the COVID-19 pandemic, which has significantly worsened this humanitarian crisis happening under our noses
A visual thread π§΅
Especially in light of the COVID-19 pandemic, which has significantly worsened this humanitarian crisis happening under our noses
A visual thread π§΅
February 18, 2025 at 2:14 PM
The case for ramping up ME/CFS research, through both public and private funding, is absolutely compelling π
Especially in light of the COVID-19 pandemic, which has significantly worsened this humanitarian crisis happening under our noses
A visual thread π§΅
Especially in light of the COVID-19 pandemic, which has significantly worsened this humanitarian crisis happening under our noses
A visual thread π§΅
@georgemonbiot.bsky.social in case this is useful for your writing!
February 18, 2025 at 5:23 PM
@georgemonbiot.bsky.social in case this is useful for your writing!
The case for ramping up ME/CFS research, through both public and private funding, is absolutely compelling π
Especially in light of the COVID-19 pandemic, which has significantly worsened this humanitarian crisis happening under our noses
A visual thread π§΅
Especially in light of the COVID-19 pandemic, which has significantly worsened this humanitarian crisis happening under our noses
A visual thread π§΅
February 18, 2025 at 2:14 PM
The case for ramping up ME/CFS research, through both public and private funding, is absolutely compelling π
Especially in light of the COVID-19 pandemic, which has significantly worsened this humanitarian crisis happening under our noses
A visual thread π§΅
Especially in light of the COVID-19 pandemic, which has significantly worsened this humanitarian crisis happening under our noses
A visual thread π§΅
A comparison of UK Government research funding for ME/CFS compared to other diseases like MS, IBD and Parkinson's π§
@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 π§
@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 π
$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 π
$14 and $62 per disability adjusted life year (DALY respectively)
#MECFS #LongCovid
$14 and $62 per disability adjusted life year (DALY respectively)
#MECFS #LongCovid
Shall give Claude another crack then! Thx
February 7, 2025 at 6:41 PM
Shall give Claude another crack then! Thx
Le Chat is a great name
February 7, 2025 at 6:26 PM
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 π
'You will notice the correct spelling of...'
Claude I can't get over how passive aggressive it got when I made a couple of typos π
'You will notice the correct spelling of...'
February 7, 2025 at 6:25 PM
Which are your favourites?
Claude I can't get over how passive aggressive it got when I made a couple of typos π
'You will notice the correct spelling of...'
Claude I can't get over how passive aggressive it got when I made a couple of typos π
'You will notice the correct spelling of...'
Currently shipping to UK only, but looking to expand this soon
February 7, 2025 at 3:07 PM
Currently shipping to UK only, but looking to expand this soon