Sign in

Peter White

@mediumwhite.bsky.social
373 followers 252 following 120 posts

Europhile 🏳️‍🌈, lived in 🇬🇧🇮🇹🇨🇼🇧🇪 🇧🇩. Dedicated follower of science. Former textile engineer, now a Mgmt consultant. I believe in believing people.

PostsRepliesMedia
Peter White @mediumwhite.bsky.social · 19/06/2025
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
12111
Peter White @mediumwhite.bsky.social · 19/06/2025
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?
21710
Peter White @mediumwhite.bsky.social · 19/06/2025
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.
22812
Peter White @mediumwhite.bsky.social · 19/06/2025
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)
68042
Peter White @mediumwhite.bsky.social · 18/06/2025
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.
111
Peter White @mediumwhite.bsky.social · 18/06/2025
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.
262
Peter White @mediumwhite.bsky.social · 19/03/2025
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.
Stephen is wondering what will happen to him, a qualified NHS radiologist who was left disabled and bed bound by ME/CFS following LongCovid, when he is no longer able to access PIP.
710435
Peter White @mediumwhite.bsky.social · 10/03/2025
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?
This is a screenshot of a letter from the UK DHSC in response to a group letter from people with ME calling for research funding for IACCs including ME/CFS.
041
Peter White @mediumwhite.bsky.social · 20/02/2025
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.
000
Peter White @mediumwhite.bsky.social · 05/02/2025
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? 🧵
310
Peter White @mediumwhite.bsky.social · 29/01/2025
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?
000
Peter White @mediumwhite.bsky.social · 27/01/2025
Exciting to see electric busses already operating in Milan. I hadn’t realised these systems were already operational. #EV #NetZero
020
Peter White @mediumwhite.bsky.social · 26/01/2025
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.
190
Peter White @mediumwhite.bsky.social · 26/01/2025
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.
100
Peter White @mediumwhite.bsky.social · 24/01/2025
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.
011
Peter White @mediumwhite.bsky.social · 20/01/2025
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.
000
Peter White @mediumwhite.bsky.social · 14/01/2025
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?
011
Peter White @mediumwhite.bsky.social · 14/01/2025
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.
130
Peter White @mediumwhite.bsky.social · 05/12/2024
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 has been stockpiling cash for years and now sits on around £3million in excess funds.
3 things I want to hear from trustees:
• A plan to spend the £3million in spare cash.
• A plan to renew the ME Association and create a dynamic, ambitious organisation.
• A plan to fundraise millions more to support researchers, campaigners and people either ME and LongCovid.
110
Peter White @mediumwhite.bsky.social · 02/12/2024
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?
120
Peter White @mediumwhite.bsky.social · 30/11/2024
I have no idea who you are. Here’s what Paul is flogging.
100
Peter White @mediumwhite.bsky.social · 20/11/2024
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?
An email from a sales person for a dodgy journal pretending to believe I have a depth of insight or expertise. 
I am not a Dr. I am not so fancy. Stop it.
000
Peter White @mediumwhite.bsky.social · 18/11/2024
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.
100