NickyProctor @NickyProctor
Writing up my #PhD a realist evaluation of coach learning & development programme @LeedsBeckett and campaigning for better healthcare #MEcfs #POTS York, uk Joined November 2010-
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NickyProctor retweeted
@hannahspierMD @dysclinic 1/Ok, perhaps your comment wasn’t as deliberately offensive as it appeared. I think what you need to understand is that patients with ME/CFS, Long Covid & other PAIS are severely organically and physically unwell. This has been proven in science irrevocably. In the same way we
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NickyProctor retweeted
This interview with U of Edinburgh geneticist Chris Ponting about Sequence ME & Long Covid has had more than 800 views. youtube.com/watch?v=fyWw2k…
NickyProctor retweeted
Former MI6 chief Sir Alex Younger on Brexit: “Putin would have been absolutely delighted by our decision.” “So would Xi. France has effectively eclipsed us. Brexit has marginalised us.” Most striking of all: “Just nobody mentions the UK.” Very sad that Sir Alex Younger, chief of the Secret Intelligence Service, born on July 4, 1963, died of pancreatic cancer on June 2, 2026, aged 62
NickyProctor retweeted
Hey it's me, Lena. I was one of the patients who did an interview about hope for @ChronicLiving1 As you might know I'm kinda the hope grinch, but I've tried to make it not that bad 😅 chroniclivingtherapy.com/lena-hope/
NickyProctor retweeted
#ME patients admitted to hospital for tube feeding are typically extremely ill, nursed at home in a darkened room. A hospital stay can be devastating for these patients, so #reasonableadjustments need to be made to prevent relapse. #DietitiansWeek #EndMalnutritionInME
@sublimepilgrim Dr Claire Taylor. Have a look at @wecrunchme site. crunchme.notion.site/clinics?v=1592…
NickyProctor retweeted
This is the article to amplify this week. “Long COVID confirmed a difficult reality: modern healthcare systems are optimized for diseases that can be rapidly diagnosed, categorized, and treated — not illnesses that require uncertainty tolerance, longitudinal care, and deep listening.” Long COVID Changed Everything open.substack.com/pub/brittanija…
NickyProctor retweeted
If we look at ME there were 100's of behavioural studies for DECADES. Most of the research was behavioural! None of it worked. We saw this in the NICE evidence review. ALL the evidence was low/very low in quality. The point is this mistake should not be repeated for Long Covid
@MalnutritionME @Myshkinrogers @decodeme 👆 Lifetime prevalence of ME/CFS for English females & males may be as high as 0.92% & 0.25%, respectively, or approximately 404k UK individuals overall (0.6%). This improved estimate of ME/CFS prevalence allows more accurate assessment of socioeconomic & disease burden imposed
@MalnutritionME @Myshkinrogers Appreciate the info you’re sharing. However, the new prevalence data from the @decodeme team suggests at least 400k in Uk (250k is old data). link.springer.com/article/10.118… Then with Long Covid added in estimate is 1.35million.
NickyProctor retweeted
Helen Baxter's presentation at the @MalnutritionTF Learning Event 2025 outlined how #dietitians can help people with #ME #dietitiansWeek #EndMalnutritionInME youtube.com/watch?v=buCcmd…
NickyProctor retweeted
An interview with Professor Chris Ponting, a geneticist at the University of Edinburgh, about the recently announced follow-up to DecodeME called Sequence ME & Long Covid: virology.ws/2026/05/31/tri…
NickyProctor retweeted
May’s newsletter: smileforme.org.uk/may2026 Includes this month’s share a story by Sarah, in memory of Maeve Boothby O’Neill 🩵
@ClagueNjc36 Thank you. Ah yes, can see it now, it’s a reel isn’t it - I’ve not really engaged with reels much (also, I find it frustrating that I have to log in to Facebook to see it, when I’m already logged into Fbook on this device.) Anyway, He’s good isn’t he! He should be on X!
@SmileForMEUK @hopefullizzy post with pictures of her smiling at receiving her @SmileForMEUK gifts. 🎁 😀 🧡
NickyProctor retweeted
Linocut by UK contemporary artist and printmaker Vanessa Lubach #WomensArt #PrintmakerArtWeek
@YorkDisability @Bethany1Handley @ehlersdanlosuk Great hearing Bethany talk about this and her experiences on Saturday Live yesterday (on bbc sounds). bbc.co.uk/sounds/play/m0…
NickyProctor retweeted
Award-winning disabled author @Bethany1Handley releases book on access to nature ehlers-danlos.org/news/bethany_h… @ehlersdanlosuk
@ZacharyGrinDPT @mediumwhite @davidtuller1 You think David is being unprofessional? Take time to reflect and you may see that Peter’s advice is very generous.
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