A historic step for ME/CFS and Long COVID research – scientific integrity must take precedence. 🧠 Science owes progress to patients – 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.

1) 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.

Temporal dynamics of the plasma proteomic landscape reveals maladaptation in #ME/CFS following exertion Arnaud Germain ∙ Katherine A. Glass ∙ Melissa A. Eckert ∙ Ludovic Giloteaux ∙ Maureen R. Hanson @cornellmecfs.bsky.social Department of Molecular Biology and Genetics, Cornell University

Update 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...

Thank you @sunsopeningband.bsky.social @scheibenbogen.bsky.social @marydimmock.bsky.social @workwellfoundation.bsky.social et al. 💙💙💙🙏🏻💙💙💙

Once 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 you’re 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 🏴󠁧󠁢󠁷󠁬󠁳󠁿 @ashleydaltonmp.bsky.social we can help you. Please accept our offer of support. Justice4ME.uk 🙏🏼🙏🏼

Labour + 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 🫠🫠🫠

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 Wüst, Todd Davenport, Akiko Iwasaki, Anne Maitland, David Putrino, Michael VanElzakker, and Maya Dusenbery (Author of the book “Doing Harm).

1) The Canadian ME/CFS research network ICanCME is organizing a free and online conference from 4 to 6 November. The main presentations take place at: 1 pm - 5 pm Eastern Time 6 pm - 10 pm London Time 7 pm - 11 pm Brussels Time #ICanCME2025

It’s #MEawarenesshour. I’m tweeting in the hope that if more people are aware of M.E. and the way it devastates lives, more effort and funding will be allocated to investigating and searching for answers. We need an agreed, objective diagnostic test for detailed clinical trials.

Dr Brayden Yellman spent years in outpatient rheumatology & acknowledges that infection-associated chronic conditions (IACCs), POTS, dysautonomia & ME/CFS mimic established rheumatic diseases & need thought about what it will take to better support such patients tinyurl.com/5yrs7wz5

David Tuller has written once more to Cochrane’s CEO feeling that an article by the CFS exercise review’s lead author presented "a solid case for the need for an update–although that was clearly not her intention." tinyurl.com/efbsshhc

GOOD NEWS! Researchers have unveiled a promising new vaccine that generates a powerful immune response against HIV and other viruses including SARS-CoV-2 and influenza with just ONE dose. By combining immune-boosting adjuvants, the vaccine encourages the body to generate more antibody variations.

Never in the life plan, but I'm proud to have this opportunity to give oral evidence at the inquiry on behalf of the @longcovidkids.bsky.social community. I will do my best, for my daughter and all children, in the hope that the rights of children will be prioritised, ASAP & in the future.

🙏

This week’s video from Jarred Younger #MECFS

How in the year 2025 are researchers still using the Fukuda criteria? 🤦🏻‍♀️ Whenever you see a new #MECFS study always check how they select ME patients. Fukuda’s giant flaw 👇

👀 ⛳️ 🏌️‍♂️ 🏆 #RyderCup

The BBC spinning for Farage. Laundering extreme policies. I’m done with making excuses for them.

Defund the BBC

If they don’t pull someone in & fire them by the end of today over this then they might as well give up now. Mass deportation plans are how Reform describe them so this is clearly a sweaty failure panicking at his people finding out what his special friends are actually like

"We have a debt crisis so I've joined the party that was in power for 14 years and under whom debt massively grew." "Commentator of the Year"

It's 2025, 6 years into a pandemic that has caused an epidemic of new cases of #MECFS. There have never been so many advocacy orgs and quality resources available to inform on MECFS. And still, media pieces that mention #MyalgicEncephalomyelitis are misinformed and incorrect. #pwME

Press Release: #ME/CFS and Long Covid: Switzerland becomes the first European country to adopt a National Strategy to help those affected Bern, 18th September 2025 The Council of States has approved a motion calling for a national strategy to improve the health situation of people with Myalgic

💯! The ME & LC story is never just a personal tragedy or triumph, it’s a massive scandal & systemic injustice that needs urgent action

People with mild ME/Long Covid & people who have recovered, please start advocating for the most severe instead of mildwashing the disease & using your story to sell your personal projects while feeding the media narrative of “individual overcoming” 🙏

Donald Trump’s war against the media—so far—has hardly enjoyed a resounding success. The president is not as strong as he appears

www.researchsquare.com/article/rs-7... #pwLC #pwME

Another one for the folder: "drugs that seem to have similar effect both for #pwMS and #pwME" Metformin and antihistamines. Rings a bell?

Kind of feels like a big deal that a Reform/Brexit Party former MEP has been convicted of taking bribes to promote Russian interests in Ukraine, and it feels like a bigger deal that this isn’t being treated as the major scandal that it clearly is.

So genuinely happy for all the people this positively affects. Wishing the same type of amazingness for the #MECFS community in our lifetime

Coming very soon. Please sign up! We can only do this together. We're starting small but we have big ambitions. Because if there's anything that the last few years have shown us, it's that we desperately need diverse, fearless INDEPENDENT media. www.thenerve.news

Because the mechanisms of mitochondrial fission were a mystery, attempts at correcting their imbalances have been stalled. We may be closer to solving that mystery thanks to an international research collaboration among bioengineers, physicists, biomedical engineers, & biochemists. #LongCOVID #MECFS

JUST NOW AT THE UN…

The real problem here one suspects is that police/prosecutors were not used to using terrorism law, it being used so casually, and so did not realise safeguards of terrorism law have to be taken seriously. Terrorism law is not just another branch of law - it is special, and should be treated so.

Here is the judgment in the case, dismissing the prosecution for want of jurisdiction. As the judgment says, no decision was made on the substantive case. And it is now out of time for this prosecution to be re-brought. www.judiciary.uk/wp-content/u...

"on a technicality" Not really. A failure to get necessary consents to a terror charge is not a slight error. They are safeguards when a person faces a serious charge. Prosecutors should take such safeguards seriously: this is terrorism law they are using. www.theguardian.com/music/2025/s...

A soft space to land. 💙 BHC holds 2 support groups each month, 2nd & 3rd Tuesdays, 1:00 pm MDT. Join us: http://batemanhornecenter.org/events/ #MECFS #LongCOVID #PeerSupport

PEM is a debilitating & hallmark feature of ME/CFS. New free module covers: • What PEM is • Triggers & warning signs • Pacing & management tips 📘 Learn at your own pace: emerge.org.au/lea-ea-bhc/ Create your account today! #PEM #MECFS #LongCOVID @emergeaustralia.bsky.social

1) Prof. Carmen Scheibenbogen's talk at the 2025 Fatigatio conference was mostly about off-label therapies in Germany. But at the end she also talked about new treatment trials they have planned to pursue the hypothesis that ME/CFS is caused by antibodies.