Peter White
@mediumwhite.bsky.social
Europhile 🏳️🌈, lived in 🇬🇧🇮🇹🇨🇼🇧🇪 🇧🇩. Dedicated follower of science. Former textile engineer, now a Mgmt consultant. I believe in believing people.
The final part is an explicit call to MPs, highlighting how people are being put into medical retirement, to fund research to gain some ability to provide meaningful care and therapies.
"We can't turn back time, but we can change the future". 🎯. Thank you @binitakane.bsky.social
"We can't turn back time, but we can change the future". 🎯. Thank you @binitakane.bsky.social
June 19, 2025 at 8:06 AM
The final part is an explicit call to MPs, highlighting how people are being put into medical retirement, to fund research to gain some ability to provide meaningful care and therapies.
"We can't turn back time, but we can change the future". 🎯. Thank you @binitakane.bsky.social
"We can't turn back time, but we can change the future". 🎯. Thank you @binitakane.bsky.social
Dr Kane calls for investment, but also easier use of off-label therapies on the NHS.
This would be a new policy for some ME organistions, and could be a really wellcome change. Should we wait for RCTs for every drug when there are people in such desperate circumstances?
This would be a new policy for some ME organistions, and could be a really wellcome change. Should we wait for RCTs for every drug when there are people in such desperate circumstances?
June 19, 2025 at 8:06 AM
Dr Kane calls for investment, but also easier use of off-label therapies on the NHS.
This would be a new policy for some ME organistions, and could be a really wellcome change. Should we wait for RCTs for every drug when there are people in such desperate circumstances?
This would be a new policy for some ME organistions, and could be a really wellcome change. Should we wait for RCTs for every drug when there are people in such desperate circumstances?
I really appreciate how Dr Kane points out the harm that the psychological narratives have done.
Drawing parallels with other diseases is so valuable. we can learn so much from what others have done, and how those diseases are being overcome.
Drawing parallels with other diseases is so valuable. we can learn so much from what others have done, and how those diseases are being overcome.
June 19, 2025 at 8:06 AM
I really appreciate how Dr Kane points out the harm that the psychological narratives have done.
Drawing parallels with other diseases is so valuable. we can learn so much from what others have done, and how those diseases are being overcome.
Drawing parallels with other diseases is so valuable. we can learn so much from what others have done, and how those diseases are being overcome.
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)
Part 2 of Prof Chris Ponting's presentation to the UK APPGs on ME and Long Covid regarding the failure to fund research into ME and Long Covid, two devastating diseases affecting over 400,000 people in the UK.
June 18, 2025 at 8:28 AM
Part 2 of Prof Chris Ponting's presentation to the UK APPGs on ME and Long Covid regarding the failure to fund research into ME and Long Covid, two devastating diseases affecting over 400,000 people in the UK.
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.
I have known Stephen for 4 years on SM. He is (was) an NHS radiologist but was disabled by ME/CFS due to LongCovid.
He is now mostly bed bound.
If he cannot access PIP, what will happen to him?
I think we know the answer, we just don’t want to write it down.
He is now mostly bed bound.
If he cannot access PIP, what will happen to him?
I think we know the answer, we just don’t want to write it down.
March 19, 2025 at 8:16 AM
I have known Stephen for 4 years on SM. He is (was) an NHS radiologist but was disabled by ME/CFS due to LongCovid.
He is now mostly bed bound.
If he cannot access PIP, what will happen to him?
I think we know the answer, we just don’t want to write it down.
He is now mostly bed bound.
If he cannot access PIP, what will happen to him?
I think we know the answer, we just don’t want to write it down.
Hi Professor - you previously raised concerns about UKRI:MRC / NIHR lack of interest in funding LC studies. Have you seen any change in that?
A bunch of us wrote to DHSC in the context of funding for the ME/CFS delivery plan, but they appear to be in denial about issues. Any changes?
A bunch of us wrote to DHSC in the context of funding for the ME/CFS delivery plan, but they appear to be in denial about issues. Any changes?
March 10, 2025 at 6:55 AM
Hi Professor - you previously raised concerns about UKRI:MRC / NIHR lack of interest in funding LC studies. Have you seen any change in that?
A bunch of us wrote to DHSC in the context of funding for the ME/CFS delivery plan, but they appear to be in denial about issues. Any changes?
A bunch of us wrote to DHSC in the context of funding for the ME/CFS delivery plan, but they appear to be in denial about issues. Any changes?
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.
I don't have Parkinson's, so my opinion does not matter, but having used @parkinsons.org.uk as an example of a great charity, I am somewhat disappointed by their new logo.
Here is the before & after. What do you think?
🧵
Here is the before & after. What do you think?
🧵
February 5, 2025 at 9:26 AM
I don't have Parkinson's, so my opinion does not matter, but having used @parkinsons.org.uk as an example of a great charity, I am somewhat disappointed by their new logo.
Here is the before & after. What do you think?
🧵
Here is the before & after. What do you think?
🧵
I was really hoping BlueSky wouldn’t have so many of these probably fake bot accounts.
Despite having no interest in boobs, I am getting loads of follows from these false accounts.
What do people do, block or ignore?
Despite having no interest in boobs, I am getting loads of follows from these false accounts.
What do people do, block or ignore?
January 29, 2025 at 1:03 PM
I was really hoping BlueSky wouldn’t have so many of these probably fake bot accounts.
Despite having no interest in boobs, I am getting loads of follows from these false accounts.
What do people do, block or ignore?
Despite having no interest in boobs, I am getting loads of follows from these false accounts.
What do people do, block or ignore?
Oh Christ, not Wessley!
Let’s remember that this is the bloke who dominated ME/CFS research for years with exactly these arguments. NICE reviewed all the work and graded it as low or very low quality.
Now that people are looking, plenty of physiological markers are off in people with ME.
Let’s remember that this is the bloke who dominated ME/CFS research for years with exactly these arguments. NICE reviewed all the work and graded it as low or very low quality.
Now that people are looking, plenty of physiological markers are off in people with ME.
January 26, 2025 at 3:38 PM
Oh Christ, not Wessley!
Let’s remember that this is the bloke who dominated ME/CFS research for years with exactly these arguments. NICE reviewed all the work and graded it as low or very low quality.
Now that people are looking, plenty of physiological markers are off in people with ME.
Let’s remember that this is the bloke who dominated ME/CFS research for years with exactly these arguments. NICE reviewed all the work and graded it as low or very low quality.
Now that people are looking, plenty of physiological markers are off in people with ME.
So I have googled (and translated) the Italian etymology- it is totally different but also interesting! (And quite funny as I am forever moaning about Italian speeches which often start with “I just want to share a few words” ahead of a 20 minute meandering commentary.
January 26, 2025 at 10:51 AM
So I have googled (and translated) the Italian etymology- it is totally different but also interesting! (And quite funny as I am forever moaning about Italian speeches which often start with “I just want to share a few words” ahead of a 20 minute meandering commentary.
Re-publishing a 10-year out of date, and highly criticised piece of work as if it were recent is wildly bad.
Cochrane deserves serious criticism for this. It’s awful.
Cochrane deserves serious criticism for this. It’s awful.
January 24, 2025 at 9:37 AM
Re-publishing a 10-year out of date, and highly criticised piece of work as if it were recent is wildly bad.
Cochrane deserves serious criticism for this. It’s awful.
Cochrane deserves serious criticism for this. It’s awful.
LinkedIn is a very mixed bag, but a very interesting insight into what "Good Comms" means in this age, from the WhiteHouse directors of comms - someone who really knows.
January 20, 2025 at 9:32 AM
LinkedIn is a very mixed bag, but a very interesting insight into what "Good Comms" means in this age, from the WhiteHouse directors of comms - someone who really knows.
This is the Action Plan the UK Dept of Health & Social Care's
ME/CFS delivery group wrote in 2022 to increase ME/CFS research.
It said these actions would be delivered by "Spring 2024".
So:
1) What is the status of these actions?
2) What impact have these actions had on ME/CFS research funding?
ME/CFS delivery group wrote in 2022 to increase ME/CFS research.
It said these actions would be delivered by "Spring 2024".
So:
1) What is the status of these actions?
2) What impact have these actions had on ME/CFS research funding?
January 14, 2025 at 1:38 PM
This is the Action Plan the UK Dept of Health & Social Care's
ME/CFS delivery group wrote in 2022 to increase ME/CFS research.
It said these actions would be delivered by "Spring 2024".
So:
1) What is the status of these actions?
2) What impact have these actions had on ME/CFS research funding?
ME/CFS delivery group wrote in 2022 to increase ME/CFS research.
It said these actions would be delivered by "Spring 2024".
So:
1) What is the status of these actions?
2) What impact have these actions had on ME/CFS research funding?
Another great email from @thereforme.bsky.social.
They are correct: to achieve change we need measurable objectives, we need to track progress against them, and change course when we fall short.
Professionally I support companies with transformation programmes. Objectives matter.
They are correct: to achieve change we need measurable objectives, we need to track progress against them, and change course when we fall short.
Professionally I support companies with transformation programmes. Objectives matter.
January 14, 2025 at 9:50 AM
Another great email from @thereforme.bsky.social.
They are correct: to achieve change we need measurable objectives, we need to track progress against them, and change course when we fall short.
Professionally I support companies with transformation programmes. Objectives matter.
They are correct: to achieve change we need measurable objectives, we need to track progress against them, and change course when we fall short.
Professionally I support companies with transformation programmes. Objectives matter.
The @meassociation.bsky.social AGM is on Monday.
The ME Association is sitting on around £3 million in spare cash, which is has been stockpiling since 2015.
Here’s what I want to hear from trustees at the AGM.
The ME Association is sitting on around £3 million in spare cash, which is has been stockpiling since 2015.
Here’s what I want to hear from trustees at the AGM.
December 5, 2024 at 6:18 PM
The @meassociation.bsky.social AGM is on Monday.
The ME Association is sitting on around £3 million in spare cash, which is has been stockpiling since 2015.
Here’s what I want to hear from trustees at the AGM.
The ME Association is sitting on around £3 million in spare cash, which is has been stockpiling since 2015.
Here’s what I want to hear from trustees at the AGM.
Hi #pwME
As I have been sharing on the other site, there are major issues with the @meassociation.bsky.social management and AGM.
I have not found anything in these winter editions about the AGM… can anyone help?
As I have been sharing on the other site, there are major issues with the @meassociation.bsky.social management and AGM.
I have not found anything in these winter editions about the AGM… can anyone help?
December 2, 2024 at 1:59 PM
Hi #pwME
As I have been sharing on the other site, there are major issues with the @meassociation.bsky.social management and AGM.
I have not found anything in these winter editions about the AGM… can anyone help?
As I have been sharing on the other site, there are major issues with the @meassociation.bsky.social management and AGM.
I have not found anything in these winter editions about the AGM… can anyone help?
I have no idea who you are.
Here’s what Paul is flogging.
Here’s what Paul is flogging.
November 30, 2024 at 10:49 PM
I have no idea who you are.
Here’s what Paul is flogging.
Here’s what Paul is flogging.
I once got a letter published in Nature. The fancy one.
Since then I get SO MANY of these emails. What is going on with dodgy academic journals? Does anyone fall for this?
Since then I get SO MANY of these emails. What is going on with dodgy academic journals? Does anyone fall for this?
November 20, 2024 at 5:36 PM
I once got a letter published in Nature. The fancy one.
Since then I get SO MANY of these emails. What is going on with dodgy academic journals? Does anyone fall for this?
Since then I get SO MANY of these emails. What is going on with dodgy academic journals? Does anyone fall for this?
There is a lot of talking about ME charities at the moment. I hope to be able to share a video about the ME Association’s annual report tomorrow.
In the meantime time, this is the message I want to SCREAM from the rooftops.
This is why successful charities are vital.
In the meantime time, this is the message I want to SCREAM from the rooftops.
This is why successful charities are vital.
November 18, 2024 at 10:29 AM
There is a lot of talking about ME charities at the moment. I hope to be able to share a video about the ME Association’s annual report tomorrow.
In the meantime time, this is the message I want to SCREAM from the rooftops.
This is why successful charities are vital.
In the meantime time, this is the message I want to SCREAM from the rooftops.
This is why successful charities are vital.