Peter White
@mediumwhite.bsky.social
Europhile 🏳️🌈, lived in 🇬🇧🇮🇹🇨🇼🇧🇪 🇧🇩. Dedicated follower of science. Former textile engineer, now a Mgmt consultant. I believe in believing people.
Reposted by Peter White
Seeking a Project Manager for the PRIME project:
"Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Closing date for applications is 15 September 2025. #pwME #MEcfs
elxw.fa.em3.oraclecloud.com/hcmUI/Candid...
"Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Closing date for applications is 15 September 2025. #pwME #MEcfs
elxw.fa.em3.oraclecloud.com/hcmUI/Candid...
PRIME Project Manager
The PRIME project is looking for an experienced and dedicated project manager. This role will be crucial to the successful delivery of PRIME, with the post holder responsible for the strategic executi...
elxw.fa.em3.oraclecloud.com
September 1, 2025 at 8:57 AM
Seeking a Project Manager for the PRIME project:
"Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Closing date for applications is 15 September 2025. #pwME #MEcfs
elxw.fa.em3.oraclecloud.com/hcmUI/Candid...
"Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Closing date for applications is 15 September 2025. #pwME #MEcfs
elxw.fa.em3.oraclecloud.com/hcmUI/Candid...
Reposted by Peter White
After 3 years photographing 50 people with #MECFS, I’ve learnt more than in the 40+ years since my own diagnosis. #LivesWeCannotLive #PwME
August 14, 2025 at 8:56 AM
After 3 years photographing 50 people with #MECFS, I’ve learnt more than in the 40+ years since my own diagnosis. #LivesWeCannotLive #PwME
I haven’t been able to write over the last few days, but what an amazing result!
Not much to say other than colossal thank you to @cgatist.bsky.social @actionforme.bsky.social and the full @decodemestudy.bsky.social team.
The gratitude that so many #pwME feel cannot be expressed in words.
Not much to say other than colossal thank you to @cgatist.bsky.social @actionforme.bsky.social and the full @decodemestudy.bsky.social team.
The gratitude that so many #pwME feel cannot be expressed in words.
Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population.
-
Summary of our results: shorturl.at/pgsjk
Check out our full preprint paper: shorturl.at/VwN3s
-
Summary of our results: shorturl.at/pgsjk
Check out our full preprint paper: shorturl.at/VwN3s
August 8, 2025 at 7:40 PM
I haven’t been able to write over the last few days, but what an amazing result!
Not much to say other than colossal thank you to @cgatist.bsky.social @actionforme.bsky.social and the full @decodemestudy.bsky.social team.
The gratitude that so many #pwME feel cannot be expressed in words.
Not much to say other than colossal thank you to @cgatist.bsky.social @actionforme.bsky.social and the full @decodemestudy.bsky.social team.
The gratitude that so many #pwME feel cannot be expressed in words.
Reposted by Peter White
Reposted by Peter White
ME linked to your genetics - early study indicates
YouTube video by Channel 4 News
youtu.be
August 6, 2025 at 6:49 PM
Reposted by Peter White
DECODE ME has published its results.
Massive congratulations to @cgatist.bsky.social and team in Edinburgh.
Let’s hope this is the start of a paradigm shift in how we view, research and treat this dreadful illness.
www.decodeme.org.uk/initial-dna-...
Massive congratulations to @cgatist.bsky.social and team in Edinburgh.
Let’s hope this is the start of a paradigm shift in how we view, research and treat this dreadful illness.
www.decodeme.org.uk/initial-dna-...
Initial DecodeME DNA Results - DecodeME
06 August 2025 The DecodeME team is delighted to announce that the initial analysis of 15,579 DNA samples is complete, and we have important news to share. Main findings from our analysis Your genes ...
www.decodeme.org.uk
August 6, 2025 at 6:50 PM
DECODE ME has published its results.
Massive congratulations to @cgatist.bsky.social and team in Edinburgh.
Let’s hope this is the start of a paradigm shift in how we view, research and treat this dreadful illness.
www.decodeme.org.uk/initial-dna-...
Massive congratulations to @cgatist.bsky.social and team in Edinburgh.
Let’s hope this is the start of a paradigm shift in how we view, research and treat this dreadful illness.
www.decodeme.org.uk/initial-dna-...
Reposted by Peter White
Six months later: What their response on ME/CFS tells us about the Cochrane Collaboration.
New post at Absolutely Maybe .... 1/2
absolutelymaybe.plos.org/2025/07/31/s...
#MECFS
New post at Absolutely Maybe .... 1/2
absolutelymaybe.plos.org/2025/07/31/s...
#MECFS
Six Months Later: What Their Response on ME/CFS Tells Us About the Cochrane Collaboration - Absolutely Maybe
Six months ago, I wrote a post called “When journal, scientific society, and community values clash.” I recounted the tale of the…
absolutelymaybe.plos.org
August 1, 2025 at 1:56 AM
Six months later: What their response on ME/CFS tells us about the Cochrane Collaboration.
New post at Absolutely Maybe .... 1/2
absolutelymaybe.plos.org/2025/07/31/s...
#MECFS
New post at Absolutely Maybe .... 1/2
absolutelymaybe.plos.org/2025/07/31/s...
#MECFS
Great video by @davetuller1.bsky.social on the Sjoerd Beentjes & @cgatist.bsky.social study into molecular signals in the blood of people with ME/CFS, showing that these are not explicable due to inactivity.
Really useful to have a lay person explanation. Thank you!
youtu.be/JYHVnKEdHig?...
Really useful to have a lay person explanation. Thank you!
youtu.be/JYHVnKEdHig?...
Interview with lead author of new ME/CFS "blood-based biomarker" study from University of Edinburgh
YouTube video by David M Tuller
youtu.be
June 29, 2025 at 12:24 PM
Great video by @davetuller1.bsky.social on the Sjoerd Beentjes & @cgatist.bsky.social study into molecular signals in the blood of people with ME/CFS, showing that these are not explicable due to inactivity.
Really useful to have a lay person explanation. Thank you!
youtu.be/JYHVnKEdHig?...
Really useful to have a lay person explanation. Thank you!
youtu.be/JYHVnKEdHig?...
If we want change, we need to fundraise for it.
Around half of medical research is funded through the charity sector.
Many people won't be able to donate, but for those who can, I cannot think of a more deserving cause than driving change for people with ME.
Around half of medical research is funded through the charity sector.
Many people won't be able to donate, but for those who can, I cannot think of a more deserving cause than driving change for people with ME.
1/2
Another Summer Appeal video in 📹
@mediumwhite.bsky.social has long-campaigned for people with ME, calling for an urgent increase in medical research funding.
Thank you, Peter, for sharing and supporting our Appeal 🌻
⬇️
Another Summer Appeal video in 📹
@mediumwhite.bsky.social has long-campaigned for people with ME, calling for an urgent increase in medical research funding.
Thank you, Peter, for sharing and supporting our Appeal 🌻
⬇️
June 20, 2025 at 2:46 PM
If we want change, we need to fundraise for it.
Around half of medical research is funded through the charity sector.
Many people won't be able to donate, but for those who can, I cannot think of a more deserving cause than driving change for people with ME.
Around half of medical research is funded through the charity sector.
Many people won't be able to donate, but for those who can, I cannot think of a more deserving cause than driving change for people with ME.
Reposted by Peter White
📢 Now published:
www.embopress.org/doi/full/10.....
Since the preprint, we replicated 9 of 14 traits in All of Us & showed that #pwME with PEM-like symptoms have stronger biomarker differences.
bsky.app/profile/cgat...
www.embopress.org/doi/full/10.....
Since the preprint, we replicated 9 of 14 traits in All of Us & showed that #pwME with PEM-like symptoms have stronger biomarker differences.
bsky.app/profile/cgat...
June 20, 2025 at 5:44 AM
📢 Now published:
www.embopress.org/doi/full/10.....
Since the preprint, we replicated 9 of 14 traits in All of Us & showed that #pwME with PEM-like symptoms have stronger biomarker differences.
bsky.app/profile/cgat...
www.embopress.org/doi/full/10.....
Since the preprint, we replicated 9 of 14 traits in All of Us & showed that #pwME with PEM-like symptoms have stronger biomarker differences.
bsky.app/profile/cgat...
Excellent presentation made by Dr @binitakane.bsky.social
to the APPGs on ME and #LongCovid.
We are fortunate to have a Doctor who understands the problems, sees the need for change and can communicate so well.
Also some strong new thinking for #pwME.
(1 of 4 short vids)
to the APPGs on ME and #LongCovid.
We are fortunate to have a Doctor who understands the problems, sees the need for change and can communicate so well.
Also some strong new thinking for #pwME.
(1 of 4 short vids)
June 19, 2025 at 8:06 AM
Excellent presentation made by Dr @binitakane.bsky.social
to the APPGs on ME and #LongCovid.
We are fortunate to have a Doctor who understands the problems, sees the need for change and can communicate so well.
Also some strong new thinking for #pwME.
(1 of 4 short vids)
to the APPGs on ME and #LongCovid.
We are fortunate to have a Doctor who understands the problems, sees the need for change and can communicate so well.
Also some strong new thinking for #pwME.
(1 of 4 short vids)
Great presentation made by Prof Chris Ponting (@cgatist.bsky.social) to the UK APPGs on ME & Long Covid about the ongoing failure to fund research into ME.
UKRI is failing #pwME and #LongCovid
Time for Wes Streeting to step in: @tessamunt.bsky.social
Please share.
Pt2 in next post.
UKRI is failing #pwME and #LongCovid
Time for Wes Streeting to step in: @tessamunt.bsky.social
Please share.
Pt2 in next post.
June 18, 2025 at 8:28 AM
Great presentation made by Prof Chris Ponting (@cgatist.bsky.social) to the UK APPGs on ME & Long Covid about the ongoing failure to fund research into ME.
UKRI is failing #pwME and #LongCovid
Time for Wes Streeting to step in: @tessamunt.bsky.social
Please share.
Pt2 in next post.
UKRI is failing #pwME and #LongCovid
Time for Wes Streeting to step in: @tessamunt.bsky.social
Please share.
Pt2 in next post.
Reposted by Peter White
It’s funny how money can leave your account on a bank holiday, but can never go in. Like a reverse Hotel California.
May 5, 2025 at 9:05 AM
It’s funny how money can leave your account on a bank holiday, but can never go in. Like a reverse Hotel California.
Reposted by Peter White
#LondonMarathon2025
Can you help Seamus hit his target 🎯 and help LCK continue our mission to support children & young people living with Long Covid & related conditions?
Tomorrow is the big day!! 🏃♂️
www.justgiving.com/page/seamus-...
#Run #runnerspace #runningmotivation #fundraiser
Can you help Seamus hit his target 🎯 and help LCK continue our mission to support children & young people living with Long Covid & related conditions?
Tomorrow is the big day!! 🏃♂️
www.justgiving.com/page/seamus-...
#Run #runnerspace #runningmotivation #fundraiser
April 26, 2025 at 2:43 PM
#LondonMarathon2025
Can you help Seamus hit his target 🎯 and help LCK continue our mission to support children & young people living with Long Covid & related conditions?
Tomorrow is the big day!! 🏃♂️
www.justgiving.com/page/seamus-...
#Run #runnerspace #runningmotivation #fundraiser
Can you help Seamus hit his target 🎯 and help LCK continue our mission to support children & young people living with Long Covid & related conditions?
Tomorrow is the big day!! 🏃♂️
www.justgiving.com/page/seamus-...
#Run #runnerspace #runningmotivation #fundraiser
@daltmann.bsky.social
This is a study in Science TM showing persistence of elements from cell walls in mouse livers, and appears to suggest it could underpin chronic symptoms…
Does this look as significant a discovery for post-infectious diseases as it seems?
www.science.org/doi/10.1126/...
This is a study in Science TM showing persistence of elements from cell walls in mouse livers, and appears to suggest it could underpin chronic symptoms…
Does this look as significant a discovery for post-infectious diseases as it seems?
www.science.org/doi/10.1126/...
The peptidoglycan of Borrelia burgdorferi can persist in discrete tissues and cause systemic responses consistent with chronic illness
Polymeric Borrelia burgdorferi peptidoglycan cell wall can persist in murine livers for weeks to months after direct injection or infection.
www.science.org
April 23, 2025 at 9:00 PM
@daltmann.bsky.social
This is a study in Science TM showing persistence of elements from cell walls in mouse livers, and appears to suggest it could underpin chronic symptoms…
Does this look as significant a discovery for post-infectious diseases as it seems?
www.science.org/doi/10.1126/...
This is a study in Science TM showing persistence of elements from cell walls in mouse livers, and appears to suggest it could underpin chronic symptoms…
Does this look as significant a discovery for post-infectious diseases as it seems?
www.science.org/doi/10.1126/...
Reposted by Peter White
#LongCovid, #MECFS and #PAIS are medical and ethical emergencies. Though many people fail to recognise this as such.
On the ethical issues, our website with the video recordings of the talks held at the #postviralethics conference is now online!! 👇
www.ru.nl/en/about-us/...
On the ethical issues, our website with the video recordings of the talks held at the #postviralethics conference is now online!! 👇
www.ru.nl/en/about-us/...
Postviral Ethics - RCPS & PCNN | Radboud University
Read the workshop report and check out the presentations.
www.ru.nl
April 17, 2025 at 4:22 PM
#LongCovid, #MECFS and #PAIS are medical and ethical emergencies. Though many people fail to recognise this as such.
On the ethical issues, our website with the video recordings of the talks held at the #postviralethics conference is now online!! 👇
www.ru.nl/en/about-us/...
On the ethical issues, our website with the video recordings of the talks held at the #postviralethics conference is now online!! 👇
www.ru.nl/en/about-us/...
The vast taxes that Donald Trump is imposing on world trade are likely to be devastating to us all.
This at a time when economies are already precarious due to Covid.
I know many people who are having a hard time at the moment. I fear things could get much, much worse.
This at a time when economies are already precarious due to Covid.
I know many people who are having a hard time at the moment. I fear things could get much, much worse.
April 5, 2025 at 10:34 AM
The vast taxes that Donald Trump is imposing on world trade are likely to be devastating to us all.
This at a time when economies are already precarious due to Covid.
I know many people who are having a hard time at the moment. I fear things could get much, much worse.
This at a time when economies are already precarious due to Covid.
I know many people who are having a hard time at the moment. I fear things could get much, much worse.
Reposted by Peter White
Closure of Columbia's ME/CFS Research Center will slow understanding of this terrible disease & progress towards effective therapies. This decision disproportionately affects women & some of the most vulnerable in society. It would've been a privilege to work alongside Ian Lipkin.
#pwME #ME #CFS
#pwME #ME #CFS
March 22, 2025 at 9:54 AM
This is what I see.
What happens to people who are too disabled and sick to work, or even get out of bed, but have no financial safety net?
You know the answer to that, you just don’t want to acknowledge it.
What happens to people who are too disabled and sick to work, or even get out of bed, but have no financial safety net?
You know the answer to that, you just don’t want to acknowledge it.
So I won’t qualify for PIP with these new rules despite being bedbound. What do I do now, there’s no way I can work at all. What will happen to me?
March 19, 2025 at 8:07 AM
This is what I see.
What happens to people who are too disabled and sick to work, or even get out of bed, but have no financial safety net?
You know the answer to that, you just don’t want to acknowledge it.
What happens to people who are too disabled and sick to work, or even get out of bed, but have no financial safety net?
You know the answer to that, you just don’t want to acknowledge it.
Reposted by Peter White
It's Long Covid Awareness Day. I know ~10 people (still) suffering from life-altering Long Covid. The only 'special' thing about me? I've been public about my own illness, so I hear stories others don't. Long Covid is widespread, devastating, and deserves everyone's attention
March 14, 2025 at 6:49 PM
It's Long Covid Awareness Day. I know ~10 people (still) suffering from life-altering Long Covid. The only 'special' thing about me? I've been public about my own illness, so I hear stories others don't. Long Covid is widespread, devastating, and deserves everyone's attention
Is this what the next 4 years are going to be? Endless u-turns and change on policy.
This is absurd.
This is absurd.
Trump says he is suspending tariffs on many Mexican goods for one month – US politics live
Trump says he is suspending tariffs on many Mexican goods for one month – US politics live
US president says after speaking to Claudia Scheinbaum anything that falls under the US-Mexico-Canada-Agreement will be exempt from 25% levy
The White House announced that Donald Trump will sign executive orders at 2pm ET.
While they did not specify…
www.theguardian.com
March 6, 2025 at 5:15 PM
Is this what the next 4 years are going to be? Endless u-turns and change on policy.
This is absurd.
This is absurd.
Reposted by Peter White
Voici un documentaire de 2021 disponible sur Arte TV visible jusqu'au 18 mars 2025 sur la maladie peu connue dont je vous parle et dont je suis atteinte : l'Encéphalomyelite Myalgique.
Arte diffuse depuis cette semaine un 2eme doc sur l' #EMSFC : en prochain post.
www.arte.tv/fr/videos/09...
Arte diffuse depuis cette semaine un 2eme doc sur l' #EMSFC : en prochain post.
www.arte.tv/fr/videos/09...
Le syndrome de fatigue chronique - L’EM/SFC, une maladie trop peu (re)connue - Regarder le documentaire complet | ARTE
Des millions de personnes souffrent d'encéphalomyélite myalgique (EM) : un épuisement extrême et persistant, pour lequel il n'existe aucun remède. Enquête.
www.arte.tv
February 27, 2025 at 8:42 AM
Voici un documentaire de 2021 disponible sur Arte TV visible jusqu'au 18 mars 2025 sur la maladie peu connue dont je vous parle et dont je suis atteinte : l'Encéphalomyelite Myalgique.
Arte diffuse depuis cette semaine un 2eme doc sur l' #EMSFC : en prochain post.
www.arte.tv/fr/videos/09...
Arte diffuse depuis cette semaine un 2eme doc sur l' #EMSFC : en prochain post.
www.arte.tv/fr/videos/09...
For those who were aware of the @meassociation.bsky.social saga pre-Christmas…
ME-Association trustees are AGAIN threatening to get legal towards people who question payments the ME Assn made to its trustees.
I don’t think this is how a charity aiming to support people with ME should behave.
ME-Association trustees are AGAIN threatening to get legal towards people who question payments the ME Assn made to its trustees.
I don’t think this is how a charity aiming to support people with ME should behave.
February 20, 2025 at 2:22 PM
For those who were aware of the @meassociation.bsky.social saga pre-Christmas…
ME-Association trustees are AGAIN threatening to get legal towards people who question payments the ME Assn made to its trustees.
I don’t think this is how a charity aiming to support people with ME should behave.
ME-Association trustees are AGAIN threatening to get legal towards people who question payments the ME Assn made to its trustees.
I don’t think this is how a charity aiming to support people with ME should behave.
Reposted by Peter White
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
I am incredibly grateful that valentine’s day is not really a thing in Italy, and my partner has no interest in valentine’s cards or manufactured drama surrounding this arbitrary day.
Relationships are hard enough without the performative crap of valentine’s day.
Relationships are hard enough without the performative crap of valentine’s day.
Let's send our warmest thoughts to the hospitality business on what is about to be the most complex night of the year. Everywhere full, of course. But also every table a two-top, and a number of toilet cubicles occupied by someone sobbing before the main course has arrived. Happy Valentine's Day.
February 14, 2025 at 11:51 AM
I am incredibly grateful that valentine’s day is not really a thing in Italy, and my partner has no interest in valentine’s cards or manufactured drama surrounding this arbitrary day.
Relationships are hard enough without the performative crap of valentine’s day.
Relationships are hard enough without the performative crap of valentine’s day.