Transferring IgG antibodies from patients with #LongCovid to mice recapitulates many symptoms
www.sciencedirect.com/science/arti...
Posts by Ella Inez
This study provides in vivo evidence of white matter neuroinflammation in #ME/CFS, characterised by cerebral edema (reduced NII-HR), cellular infiltration (reduced NII-RF) and axonal reorganisation (increased NII-FF). This suggests NII-derived indices may serve as sensitive biomarkers for
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?
Graphic with a dark blue background and pink and cyan accents titled "PROGRESS WORTH CELEBRATING." Large pink text reads "GOOD NEWS: Major breakthrough for ME/CFS research" with a party popper emoji. The main text announces that DISCOVER-ME, co-led by Prof Carding, has received €7.5 million in EU funding. It involves 21 international partners studying 2,000 patients to deliver biologically validated disease classification, actionable biomarkers, AI-driven stratification, and foundations for precision trials and drug repurposing in ME/CFS. The Long Covid Advocacy logo is at the bottom right.
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...
Action for ME, the Schmidt Initiative for Long COVID, and the Complex Disorders Alliance (CODA) announce the launch of Sequence ME & Long Covid – the world’s largest long-read, whole-genome study of any disease. Sequence ME & Long Covid is a £20 million research initiative designed to explore the root causes of ME and Long Covid using long-read, whole-genome sequencing. Partners, The Schmidt Initiative for Long COVID and CODA have provided $200,000 and $50,000, respectively, to contribute towards the cost of this first phase.
🧬 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-...
Purpose: Reduced cerebral blood flow (CBF) may play a role in the pathophysiology of postexertional malaise (PEM) in myalgic encephalomyelitis (ME). This case report aimed to determine the feasibility of measuring differences in blood flow to the head occur during PEM induced by 2-day cardiopulmonary exercise testing (CPET). Methods: One individual with ME and 1 nondisabled individual underwent a 2-day CPET to induce PEM. Blood flow was assessed using a novel in-ear device (Lumia Health), using photoplethysmography to estimate a relative flow index while participants were supine and during a 10-minute standing test before CPET. The person with ME showed a 34% decrease in work at the ventilatory anaerobic threshold (VAT), confirming PEM on day 2. During PEM, flow index decreased by 17% while supine and 23% during orthostasis compared to day 1. The nondisabled individual did not exhibit subjective or objective PEM (1% reduction in work at VAT) and experienced less than a 5% reduction in flow index while supine. Results and Conclusions: Reduced blood flow to the head during PEM may partially explain ME symptomatology. The novel in-ear device shows promise as a diagnostic and biofeedback tool, warranting further research in larger studies.
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 1 Comment / By David Tuller / 25 October 2025 By David Tuller, DrPH Ten years ago this month, I launched Trial By Error with a 15,000-word investigation of the misbegotten and fraudulent PACE trial, which purported to prove that graded exercise therapy (GET) and cognitive behavior therapy (CBT) could cure what they then called chronic fatigue syndrome. And what an amazing ride it’s been for me—difficult and challenging at times, but always fascinating, rewarding and engaging, both intellectually and personally.
"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