Simon McGrath

Very true

More accurate, but I'm not sure many sub editors would allow disenfranchisement in a headline..,

Yes, there was something for the desperate to hang onto, and I am grateful.

Thanks. I agree that the 50% figure is unreliable. I'm not sure how reliable the 20% figure is either eg the ONS figure uses a very broad implementation of LC. I'm not sure the long Covid field has got a robust case definition yet: Hard to estimate the rate of ME/CFS without one.

Do you have a link to the Scheibenbogen 20% figure ?

It is, but I think it's very important the field tries to replicate such findings. Otherwise, we end up with lots of promising results pointing in different directions, and no obvious way forward

Until I saw OI suggested in your thread, I hadn't linked it to sickness behaviour. But as you say, the need to lie down is very common. But not the other aspects, AFAIK, and Google didn't throw up much. But JE stresses the line down aspect in ME/CFS. Just musing.

2 things are not clear to me:
– how does the hypo explain PEM?
- how does it explain relapses? If the problem was simply more severe symptoms, it might be possible to push through without harm, but that's not the experience of most people.

Think these are difficult questions for any theory

Is OI part of sickness behaviour?

Cornell researchers performed longitudinal plasma proteomics (SomaScan7K ) in 79 #MECFS vs 53 controls around two maximal CPETs. Findings: Persistent immune & metabolic dysregulation in recovery, linked to PEM. Learn more on our website.

neuroimmune.cornell.edu/news/uncover...

#PwME #CFS

Not for #MEcfs but for rheumatoid arthritis: Successful clinical trial of vagus nerve-mediated neuroimmune modulation: www.nature.com/articles/s41....
Question asked by Eric Topol and Kevin Tracey is: Can this be successfully applied to other diseases? bsky.app/profile/eric...

Thanks for the summary. So, mild to moderate differences for patients who had been referred to a dysautonomia clinic and with no controls.. Hard to know what that tells us,, there might suggest that this is not the core issue in the illness

Surprising but good news. Do you know why they change their minds?

We will be mindful of this: “In designing a study, a goal of ME/CFS researchers should be to determine if a significant result can actually inform disease mechanisms, or if it is simply a reportable difference between patients and controls.” VanElzakker et al. www.frontiersin.org/journals/neu...

Your wish is our command! Next year, the PRIME network intends to organise a (hybrid) Symposium exactly on the topic of biomarkers and diagnostic tests. Who should we invite? #MEcfs
bionow.co.uk/news/prime-b...

This is the link to Chris Ponting's post
bsky.app/profile/cgat...

Population-scale sequencing resolves determinants of persistent EBV DNA - Nature Population-scale WGS reveals genetic determinants of persistent EBV DNA, linking immune regulation—especially antigen processing and MHC class II variation—to EBV persistence and heterogeneous di...

Blood DNA residue of Epstein-Barr virus (which causes MS & IM) correlates with various diseases. Our genetics controls this amount
www.nature.com/articles/s41...
Caveat: positive results not relevant to #MEcfs due to researchers applying wrong codes, see
www.sciencemediacentre.org/expert-react...

1) A new publication in Nature found that approximately 10% of people in the UK biobank have DNA of the Epstein-Barr virus in their blood and that this is associated with various autoimmune (lupus, rheumatoid arthritis) and respiratory diseases such as COPD.

“Wikipedia represents something unprecedented: the only major platform on which truth emerges through transparent debate, rather than algorithmic opacity or corporate interests. Every edit is logged, every discussion archived”

Use the Wikipedia app.
🧪 #Knowledge
www.nature.com/articles/d41...

SARS-CoV-2 Infection Is Associated With an Increased Risk of Hospital-Treated Infectious Mononucleosis due to EBV: National Register-Based Cohort Study — Snieguole Vingeliene et al. "In this national study, SARS‐CoV‐2 infection was notably associated with an increased risk for subsequent EBV‐IM." "A positive PCR test without hospital admission, which occurred in a larger number of individuals, was associated with a higher risk of subsequent EBV‐IM, compared with individuals who did not have a registered positive PCR test for SARS‐CoV‐2 infection."

From Sweden:

SARS-CoV-2 Infection Is Associated With an Increased Risk of Hospital-Treated Infectious Mononucleosis due to EBV: National Register-Based Cohort Study

onlinelibrary.wiley.com/doi/10.1002/...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC

1) We’ve just published our review of the most interesting ME/CFS studies of 2025.

It feels like this year, we’ve made a significant step towards understanding the pathophysiology of ME/CFS.

A brief overview of the studies that caught our eye.

A brilliant review of a big year for ME/CFS research from this extraordinary blogging team. DecodeME results and lots more, including areas with less promising results eg antibodies & viral persistence. Plus the positive clinical trial pilot for daratumumab.

Breakthrough New Material Brings Affordable, Sustainable Future Within Grasp Researchers have developed a new material for sodium-ion batteries, sodium vanadium phosphate, that delivers higher voltage and greater energy capacity than previous sodium-based materials. This break...

Previously, I posted that Na-ion batteries were likely to reach Li-ion battery energy density faster due to the prior advances and experience from Lithium work. Well, that’s appears to be the case. 🧪🔌💡☀️💨💧🔋 www.uh.edu/news-events/...

1) Prof. Scheibenbogen announced that the biopharma company Sanofi is willing to support a drug trial on ME/CFS led by the Charité.

Sanofi also expressed an interest in gaining a better understanding of the disease and its mechanisms.

1) This factsheet for medical professionals received a lot of response and discussion.

Some people felt it was dismissive of several findings in the ME/CFS field, so I want to give some more background and context.

Sign the Petition Call for Funding a New Clinical Study on Daratumumab for ME/CFS

🇳🇴 Patients from Norway have created a petition to encourage the government to provide funding for the Daratumumab study and to strengthen future biomedical research efforts in ME CFS.

You can sign the petition here:

It's been cited 34 times. And I think it made it impossible for the Pace authors to continue with claims that CBT and grade exercise led to recovery.

Screenshot of abstract

9-year anniversary of reanalysis paper on recovery in £5m #PACEtrial, with data the PACE team fought so hard to keep to themselves.

Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol

tandfonline.com/doi/full/10....

#MEcfs #CFS

1) This interesting short paper showed that the immune cells of Long Covid patients had a stronger response to viral mimics than controls. They produced more type I interferon.