Es ist einfach ermüdend, wenn man die Geschichte von ME/CFS kennt und weiß, wie auch Medienstrategien an der Verharmlosung beteiligt waren. Lest gerne nochmal dazu den Artikel (2024) von George Monbiot:
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Just over a year ago, I left my 25 year NHS career to dedicate my life to a group of patients who remain largely unseen and unheard by the NHS - people with severe #LongCOVID and Myalgic Encephalomyelitis (#ME). 🧵
youtu.be/pk00btt7CVs?...
Some NHS GPs are still recommending graded exercise therapy to ME patients. It just happened to me. The guidelines changed in 2021. What can we do about this?
Some good news!
We do (🤞) seem to be at a turning point of decent research being funded for #ME
See S4ME forum post for more details:
🖇️ tinyurl.com/msbft7e6
Is the OMF’s ME/CFS BioQuest Study the Study We’ve All Been Waiting For? #MECFS
www.healthrising.org/blog/2026/02...
Update:
Feeling unsafe Savannah self-discharged & left QEH in a private ambulance. Even with the CEO of a national charity advocating in person, Guy’s refused to admit her. After waiting over two hours in the ambulance, she was forced to return to QEH.
www.gofundme.com/f/severemerg...
🧬 Phase 1 of whole-genome sequencing for ME and Long Covid is now funded for 2 years - building on DecodeME.
It’s the world’s largest study of its kind for any disease, but it’s a £20m project and much more support is needed.
I’ve just donated:
www.actionforme.org.uk/research-cam...
Update on Savannah’s case in The Times. She has severe ME/CFS, has lost 30kg and eaten nothing since January 18.
Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die.
archive.ph/J3Xv3
Wrote about what happened immediately after I became bedbound with ME.
thepersonalme.substack.com/p/after-the-...
Interesting study & technology.
Hopefully it becomes widely available for clinical practice.
Blood Flow to the Head in a Person With Myalgic Encephalomyelitis Experiencing Postexertional Malaise: A Case Report
journals.lww.com/cptj/abstrac...
#MyalgicEncephalomyelitis #PwME #MEcfs #CFS
"After more than a decade of engaging in shameless bothsidesism, whataboutism, and fanatical, greed-driven appeals to far-right eyeballs, America’s corporate, legacy media appears poised to fall victim to the grave, fascist threat it helped bring about"
zeteo.com/p/the-maga-f...
I didn't like how I'd get angry quickly, frustrated and anxious, unkind in the things I'd think or say.
Turns out, this is very likely a symptom of ME/CFS. Such fun!
www.youtube.com/watch?v=Sg5q...
#MECFS #pwME #LongCovid #MentalHealth
"Trial By Error: Some Thoughts on Ten Years of Trial By Error" By David Tuller @davetuller1.bsky.social (25 October 2025)
virology.ws/2025/10/25/t...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
1) Remember the intramural NIH study about effort preference in ME/CFS?
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
1) During the Stanford Community Symposium, Dr. Randall Peterson explained how his team at the University of Utah has recreated the Itaconate shunt model of ME/CFS in zebrafish.
They found that these fish swim less and have reduced oxygen consumption.
Dr. Fridbjörn Sigurdsson was a medical oncologist before focusing on ME/CFS. During the 2025 Invest in ME conference, he said:
"What I have learned is that most of the patients that I have seen with ME are so much sicker than my cancer patients."
Reminder: The DecodeME team want to do a related genetic study with the samples they have collected already but unfortunately don’t have the funding yet:
megenetics.org.uk/our-projects...
#MEcfs #PwME #CFS
Wow that's major! Fingers crossed it keeps working for you. I'll let you know how I get on with it. Other Mito supplements have been too stimulating for me so I'm gonna go carefully
Oxaloacetate for ME/CFS, does it help? I'm hoping it either works brilliantly or not at all because £400 a bottle is insane.
The Norwegian ME Association is raising funds for a clinical trial on Daratumumab as a potential treatment for ME. The study is led by the ME research, Fluge, Mella et al. Target: US$ 2.6m/ Euro 2.2m/ £1.9m. ME-fondet is accepting international donations.
tinyurl.com/3h3x9mz6
😄
Absolutely please tell me more! I wanna see letters fall off the ends of their names!
youtu.be/wuzmYJxM-r0?...
'There are so many regions...it's a brain-wide issue...safe to say the ME/CFS brain is an inflamed brain'
'IgGs from ME/CFS patients carry a chronic protective stress response that promotes mitochondrial adaptation via fragmentation'
Oh my god noooo. That's truly heroic
🫣I barely managed to watch the whole two minutes! What an unbearable supercilious bunch.
Today we honor Severe ME.
We hear you.
We see you.
We care.
Today is a day of awareness & visibility for the estimated 25% of people living with Severe ME
#SevereME #SevereMEDay2025
Blue pigs? What in the Parable of the Sower? Booktok warned us.
www.independent.co.uk/news/world/a...
The #DecodeME study is terrific - a milestone in biomedical science. But headlines like “ME is real” are not good journalism.
ME was already scientifically established by the mid-1990s. And clinical evidence has supported its reality since the 1950s.
So why do we get these headlines?
#pwME
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