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/
Pinned
Ror Preston
@rorpreston.bsky.social
· 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 🤯
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
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
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 💊
Thank you to @mildtin.bsky.social, our clinical trials lead, for putting these together!
A visual thread 🧵
#MECFS #LongCovid
Thank you to @mildtin.bsky.social, our clinical trials lead, for putting these together!
A visual thread 🧵
#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 💊
Thank you to @mildtin.bsky.social, our clinical trials lead, for putting these together!
A visual thread 🧵
#MECFS #LongCovid
Thank you to @mildtin.bsky.social, our clinical trials lead, for putting these together!
A visual thread 🧵
#MECFS #LongCovid
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
Reposted by Ror Preston
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 🧵
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
Reposted by Ror Preston
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
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
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...
www.medrxiv.org
February 2, 2025 at 11:28 PM
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
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
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...
www.medrxiv.org
February 2, 2025 at 11:23 PM
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
Odds of a crash 45% lower during late luteal phase compared to peak during menstrual phase
www.medrxiv.org/content/10.1...
#MECFS #LongCovid
Reposted by Ror Preston
Your yearly reminder of how shockingly low the funding for MECFS research is.
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 2, 2025 at 10:00 AM
Your yearly reminder of how shockingly low the funding for MECFS research is.
Reposted by Ror Preston
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
#MECFS #MyagicEncephalomyelitis #MedicalScandal
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 7:59 PM
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
#MECFS #MyagicEncephalomyelitis #MedicalScandal
Reposted by Ror Preston
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
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
Reposted by Ror Preston
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 💙
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 💙
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 28, 2025 at 10:29 PM
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 💙
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 💙
Reposted by Ror Preston
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...
Reposted by Ror Preston
I’ll be reading this in its entirely today, @crunchme.bsky.social! Thanks so much!
#mecfs #millionsmissing
#mecfs #millionsmissing
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 5:35 PM
I’ll be reading this in its entirely today, @crunchme.bsky.social! Thanks so much!
#mecfs #millionsmissing
#mecfs #millionsmissing
Reposted by Ror Preston
Really great document, policy-oriented. Every slide is comprehensive, up to date, extremely clear in argumentation, great referencing...
Hopefully LOTS of MPs, MEPs and policy-makers will have access to it 👏📌
THANK YOU @mildtin.bsky.social via @crunchme.bsky.social & @rorpreston.bsky.social
Hopefully LOTS of MPs, MEPs and policy-makers will have access to it 👏📌
THANK YOU @mildtin.bsky.social via @crunchme.bsky.social & @rorpreston.bsky.social
January 27, 2025 at 4:19 PM
Really great document, policy-oriented. Every slide is comprehensive, up to date, extremely clear in argumentation, great referencing...
Hopefully LOTS of MPs, MEPs and policy-makers will have access to it 👏📌
THANK YOU @mildtin.bsky.social via @crunchme.bsky.social & @rorpreston.bsky.social
Hopefully LOTS of MPs, MEPs and policy-makers will have access to it 👏📌
THANK YOU @mildtin.bsky.social via @crunchme.bsky.social & @rorpreston.bsky.social
Reposted by Ror Preston
Vitally important report from @crunchme.bsky.social on
Addressing Infection Associated Chronic Conditions
"It brings together much of the key information needed to help bring policymakers up to speed on these conditions - including #LongCovid, #ME/CFS, #POTS"
Addressing Infection Associated Chronic Conditions
"It brings together much of the key information needed to help bring policymakers up to speed on these conditions - including #LongCovid, #ME/CFS, #POTS"
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 3:38 PM
Vitally important report from @crunchme.bsky.social on
Addressing Infection Associated Chronic Conditions
"It brings together much of the key information needed to help bring policymakers up to speed on these conditions - including #LongCovid, #ME/CFS, #POTS"
Addressing Infection Associated Chronic Conditions
"It brings together much of the key information needed to help bring policymakers up to speed on these conditions - including #LongCovid, #ME/CFS, #POTS"
Reposted by Ror Preston
This is a hugely important paper particularly for policymakers on #ME #LongCovid Thanks to all who worked on it.
Please #pwME pass it round. Let’s get this scientific evidence out 🔥
Please #pwME pass it round. Let’s get this scientific evidence out 🔥
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 2:32 PM
This is a hugely important paper particularly for policymakers on #ME #LongCovid Thanks to all who worked on it.
Please #pwME pass it round. Let’s get this scientific evidence out 🔥
Please #pwME pass it round. Let’s get this scientific evidence out 🔥
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! ✌️💙