Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
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- Likes 17,303
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My #MECFS scandal explainer video has just passed 200,000 views.
Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since.
medium.com/@abrokenbattery/m…
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Adam retweeted
Another blistering column on ME/CFS from George Monbiot: virology.ws/2026/09/26/trial…
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I've just seen over on the other place that Natasha Devon will have George Monbiot on her show to discuss his latest ME Guardian piece at the weekend.
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This is trending! #ME people do keep sharing or posting or quoting if possible. We’d love to get out of the bubble.
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Further reading on #ME for anyone who wants to know more after reading George Monbiot’s Guardian article today.
theconversation.com/ignored-…
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An inquiry is desperately needed. But we have the added complication that Wessely is on the 15 member JAC, Judicial Appointments Board. They appoint judges & have advisory power for tribunals.
Covered here:
longcovidadvoc.com/post/the-…
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RT @KatyBruce108: "I’ve spent my working life covering neglected issues. But few are neglected like the devastating chronic condition ME/CF…
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Essential reading. New Guardian article from George Monbiot.
'Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed.'
theguardian.com/commentisfre…
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Prof Simon Carding on BBC Radio Norfolk yesterday discussing DISCOVER-ME, a €7.6 million international ME/CFS research project. His team in Norfolk, along with more than 20 institutions across Europe and Canada, are investigating the biological mechanisms of the disease.
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Full segment (4 mins)
piped.video/MvALv1cGsCA?is=dntK…
More info about the project
meresearch.org.uk/me-researc…
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As part of my letter to the local ME service, plus George Monbiot discussing ME again i decided to look up the service more… and found this…
This is GET no?
And if so… maybe it’s actually a bad idea to ask them to advocate for people with SevereME…
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Update: George has now received enough responses, so please don’t send any more emails. I will delete my original post.
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If you are diagnosed with ME/CFS and fulfil one of the following—CCC, IOM or NICE 2021 diagnostic criteria (all requiring PEM)—do you experience a noticeable ‘uptick’ in function at a certain time of the day, each day?
Please retweet if able. Thanks!
#MECFS #ME #MyalgicE
57%
Yes, evening-night uptick
14%
Yes, afternoon uptick
11%
Yes, morning uptick
19%
No uptick
378 votes • Final results
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"It turned out the study was full of holes."
Highlights Dutch insurance physician Jim Faas discussing the problems with the £5M PACE trial for #MECFS on Dutch TV in 2017.
“I had to drop out as I got more and more ill.”
John Kieboom talking about how he became bedridden following the exercise therapy he was prescribed for #MECFS. Dutch TV report following the release of the PACE trial data in 2017. #MECFSScandal
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Alem Matthees has joined Bluesky!
bsky.app/profile/alemmatthee…
Alem was instrumental in the release of the PACE trial data. It's really good to see him active on social media.
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"In just my mind, my body felt like it was dying."
Emma Donohoe talking about having Severe ME at 19, bed bound 90% of the time, unable to eat without symptoms, unable to think straight or even remember the names of friends. #MECFS
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Full video: ‘ME and Me' BBC Newsbeat documentary about young people with #MECFS (2018)
piped.video/XLPCuEdqIWY
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Having the reality of your illness denied “is almost as bad as the actual physical symptoms themselves.”
Ed Yong, speaking about #LongCovid patients being disbelieved and dismissed, and how gender and racial bias affect their care.
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Watch the full video (13 mins):
Long COVID: What Do You Need to Know?
PBS Vitals | 20 July 2023
piped.video/F226T43cPGI
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