I wish I didnβt have to share this. But the BBC has decided to censor my first Reith Lecture.
They deleted the line in which I describe Donald Trump as βthe most openly corrupt president in American history.β /1
@baszkom.bsky.social
ME-dically gaslit for 10yrs.
I wish I didnβt have to share this. But the BBC has decided to censor my first Reith Lecture.
They deleted the line in which I describe Donald Trump as βthe most openly corrupt president in American history.β /1
Dr Jonas Bergquist & Dr Alain Moreau discuss their main ideas behind ME/CFS, including an immune system that is too active in the brain and spinal cord, inherited factors, and how genes are expressed. [23 mins] +Transcript
tinyurl.com/59hjxjjs
Dr Francisco Westermeier's team has found that ME/CFS affects the cardiometabolic health of women differently from how it affects the health of men and suggests that antioxidants may help men with ME/CFS more than women with ME/CFS.
tinyurl.com/5ddkjuc3
Does anyone know what percentage of MECFS patients don't experience pain at all?
I don't have pain. I don't have anxiety. I don't have depression. The central sensitization theory just doesn't match my symptoms.
βImagine plugging in a dead cell phone over night. When you awake, you expect it to be at 100%. But when you wake, itβs only at 9% and you have to try and function on that 9 percent. Youβre never fully charged.β https://buff.ly/3rRDYWM #chronicillness #severeME #pwME #pwLC
21.11.2025 14:23 β π 10 π 3 π¬ 0 π 0β³ The #YEVienna2025 workshop is happening next week!
Next up in our speaker highlights is Dr Eva Untersmayer-Eisenhuber β¨
Sheβll present βFrom basic research to clinical application: translation of interdisciplinary research in ME/CFSβ.
Ritz Carlton has built a high-end lodge on the grand migration route, Maasai Mara Kenya.
Maasai leaders seek legal redress but also experiencing challenges. They need international support.
Hope this story gains wider coverage, as the climate impacts are also relevant.
bsky.app/profile/juli...
π΄The Government Has Cut Air Pollution Funds to Councils by 99% as Illegal Levels of Pollution Shorten Lives
New data shows just Β£1.5 million was given to councils in England in the past year to tackle air pollution β down from a high of Β£225 million in 2021
bylinetimes.com/2025/11/21/t...
friendly reminder, you can stand up for immigrants without tying our worth/intrinsic value to our labor
11.06.2025 18:58 β π 556 π 172 π¬ 12 π 21Coverage of the refugee proposals demonstrates why we have such a broken political system. Endless focus on left-wing anger and right-wing support. Basically nothing on whether the reforms will work. They will not, which is why we'll still be here having the same debate in three years.
18.11.2025 08:40 β π 1674 π 386 π¬ 97 π 23A historic step for ME/CFS and Long COVID research β scientific integrity must take precedence. π§ The German governmentβs commitment of β¬500 million for Long COVID and ME/CFS research marks a historic milestone. This funding offers an unprecedented opportunity to develop validated diagnostic tools and curative treatments. It is imperative that these funds are allocated to evidence-based, high-quality science. The current NICE guidelines (UK) reviewed 236 studies on cognitive behavioral therapy (CBT) and graded exercise therapy (GET) β not a single one demonstrated even moderate-quality evidence. Such approaches can no longer be legitimized as viable treatments. Science owes progress to patients β not the repetition of past mistakes.
A historic step for ME/CFS and Long COVID research β scientific integrity must take precedence. π§
Science owes progress to patients β not the repetition of past mistakes.
If you use prodrome products you can get 35% off now with our affiliate code FALOR35. The affiliate income goes to our non-profit which is a way you can help us.
Please like and share widely to help us fund research, education and care in MECFS, Long Covid & associated conditions
Using Golden Ticket to describe people who have fled war and destitution to legally seek asylum. An internationally recognized legal right that the UK is treaty bound to recognize is pure cruelty and evil. It is the language of Nazis, of deportations, of camps and life unworthy of life. Evil.
16.11.2025 07:52 β π 440 π 122 π¬ 9 π 21) This study from Cornell University tested more than 6000 proteins before and after two exercise tests.
It found altered patterns in ME/CFS patients compared to controls, particularly in proteins involved in the immune system, signal transduction, and muscle contraction.
ππ«
14.11.2025 22:56 β π 0 π 0 π¬ 0 π 0Temporal dynamics of the plasma proteomic landscape reveals maladaptation in #ME/CFS following exertion
Arnaud Germain β Katherine A. Glass β Melissa A. Eckert β Ludovic Giloteaux β Maureen R. Hanson @cornellmecfs.bsky.social
Department of Molecular Biology and Genetics, Cornell University
Thanks Chris. Appreciate you taking the time to answer.
14.11.2025 13:59 β π 3 π 0 π¬ 0 π 0I know it's cynical (it's my 12 year MECFS anniversary this month so I'm working through some things mentally and emotionally) but do we even know this is for biomedical research? Or will this just be spaffed up the wall on more exercise and brain re-training/CBT trials?
14.11.2025 11:59 β π 0 π 0 π¬ 1 π 0Update on Dr. David Systrom Study led by Harvard MECFS Collaboration
A cardiopulmonary exercise test with muscle biopsy reveals reduced mitochondrial biomass and disturbed mitochondrial function in skeletal muscle.
www.omf.ngo/investigatio...
Sure but people who had loving, safe, attentive childhoods still end up with ME so it's clearly not causal.
10.11.2025 21:42 β π 2 π 0 π¬ 0 π 0Thank you @sunsopeningband.bsky.social @scheibenbogen.bsky.social @marydimmock.bsky.social @workwellfoundation.bsky.social et al. πππππ»πππ
17.10.2025 16:14 β π 3 π 1 π¬ 0 π 0Once again and I repeat myself: the best research which came out of the NIH Intramural study, as an offshoot, was P. Hwang et al. 2023 paper on WASF3 in the muscles of #pwME. Published in @pnas.org
WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in #ME/CFS
9) But once they have those genes, he said, they will be knocking on the doors of experts in those genes in the field of neurology and immunology and say: "We know youβre a busy person, but you should be working on ME/CFS."
1) Another interesting interview of Prof Chris Ponting by David Tuller.
They talked about PRIME, a new 4-year project that will provide an infrastructure to accelerate ME/CFS research. It received 0.8 million in funding from the Medical Research Council (MRC).
So proud to be amongst a community so dignified and respectful despite being so badly wronged, badly represented and unjustly served. Strength in our numbers #pwME #LongCovidME. Thank you π΄σ §σ ’σ ·σ ¬σ ³σ Ώ
@ashleydaltonmp.bsky.social we can help you. Please accept our offer of support.
Justice4ME.uk ππΌππΌ
π€‘π€‘π€‘
06.10.2025 06:53 β π 0 π 0 π¬ 0 π 0Labour + Streeting launching review into "over diagnosis" of mental health/neurodiverse conditions.
Simon Wessely been given vice chair position for it.
Excited for Cass 3.0 π« π« π«
How many more lives is Simon Wessely going to wreck before he retires?!?! #pwME #MECFS
You'd think that someone who had got things so stunningly, utterly, cruelly wrong in his unfounded, unscientific beliefs about ME would be discredited.
Again he'll claim people have a "false illness" belief
3) Speakers include Alain Moreau, Rob WΓΌst, Todd Davenport, Akiko Iwasaki, Anne Maitland, David Putrino, Michael VanElzakker, and Maya Dusenbery (Author of the book βDoing Harm).