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Simon McGrath @simonmcg.bsky.social · 9h

Haha!

Simon McGrath @simonmcg.bsky.social · 9h

There must be well over 100 ME/CFS biomarker studies, all claiming success – but none have been replicated.

And that's probably no better bet for forgetting media coverage either – it makes such a nice story (every time).

Chris Ponting @cgatist.bsky.social · 23h

The research used to claim reliability of a ME/CFS blood test has important limitations, shown here.

www.theguardian.com/society/2025...

Three possible confounders in a study proposing an ME/CFS blood test : sex/age, batch and inactivity/severity. Better designed studies by independent researchers are necessary.

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Reposted by Simon McGrath

ME/CFS Science @mecfsskeptic.bsky.social · 14h

1) There's a new ME/CFS study that is getting a lot of attention in the media. It focuses on epigenetics: how genes are switched on or off by folding DNA in a different way.

You genetic code itself is fixed but the expression of genes can change by environmental factors.

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Simon McGrath @simonmcg.bsky.social · 10h

Is there some rule of thumb that you should have multiple more cases then parameters?

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Reposted by Simon McGrath

Chris Ponting @cgatist.bsky.social · 23h

The research used to claim reliability of a ME/CFS blood test has important limitations, shown here.

www.theguardian.com/society/2025...

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Simon McGrath @simonmcg.bsky.social · 20h

Oh great

Simon McGrath @simonmcg.bsky.social · 1d

Agree. Too many hypotheses, too few open minds and real investigations.

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Simon McGrath @simonmcg.bsky.social · 2d

Do you know why they tagged that neurotransmitter?

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Simon McGrath @simonmcg.bsky.social · 4d

This is an excellent read for anyone wanting to understand more about the DecodeME study, what it might mean and what comes next.

ME/CFS Science @mecfsskeptic.bsky.social · 4d

1) We’ve written an article about the DecodeME results: what the study measured, what the results show, and why its findings are important.

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Reposted by Simon McGrath

ME/CFS Science @mecfsskeptic.bsky.social · 5d

1) 🇳🇴 Ola Didrik Saugstad and his colleagues report about the first specialised care unit for severely and very severely affected ME/CFS patients.

It opened in 2021 in Norway. The authors report the results from the first 3 years.

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Simon McGrath @simonmcg.bsky.social · 6d

I think it was also those who had been ill for the shorter times that had better recovery rates

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Reposted by Simon McGrath

Carl Zimmer @carlzimmer.com · 7d

Jane Goodall, Eminent Primatologist Who Chronicled the Lives of Chimps, Dies at 91. Gift link: nyti.ms/48FOuUn

nyti.ms

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Reposted by Simon McGrath

Tom Kindlon @tomkindlon.bsky.social · 7d

Exciting to see this 🔥

Specialised care for severely affected ME/CFS patients

Free:
www.tandfonline.com/doi/full/10....

Would be great to have such facilities in countries around the world. Approach is very different from the (inappropriate/dangerous) rehab/BPS approach

#MEcfs #SevereME #PwME

ABSTRACTIntroduction: A specialised care unit for severely and very severelyill ME/CFS patients opened in 2021. The results from the first 3 yearsare reported.Methods: People with ME/CFS who were diagnosed according tothe Canadian Consensus Criteria, who are aged 18 or above withsevere or very severe ME/CFS according to the UK NICEguidelines, are eligible to stay at Røysumtunet. The study designis a retrospective review of medical records.Results: Between June 2021 and June 2024, 24 ME/CFS patients, 20women and 4 men with a confirmed diagnosis of ME, wereadmitted to the unit for stays of at least 3 months. Seventeenwere very severely affected and 7 were severely affected. Agesranged from 18 to 68 years, with mean (SD) 37.5 (12.8) years.Seven patients showed significant improvement (p < 0.01), andfive others showed some improvement. In total 50% improved (p< 0.01). Patients who improved were borderline significantlyyounger than those who did not, with a mean age of 30.3 (SD12.6) years compared to 39.8 (SD 11.8) years (p = 0.06). The meanduration of disease was 2.3 (1.3) years for those who improvedversus 6.7 (3.9) years for those who did not improve (p < 0.05).Conclusion: This is the first report of a specialised care unit for themost severely ill ME/CFS patients. Fifty per cent of patients showedsignificant or partial improvement. The mechanisms behind theseimprovements are discussed but require further exploration infuture studies.

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Health Nerd @gidmk.bsky.social · 8d

I have just left a lengthy Pubpeer comment on the autism/Tylenol study being cited by the Trump administration. There appear to be a number of fairly straightforward errors in the paper.

pubpeer.com/publications...

PubPeer - Evaluation of the evidence on acetaminophen use and neurodev...

There are comments on PubPeer for publication: Evaluation of the evidence on acetaminophen use and neurodevelopmental disorders using the Navigation Guide methodology (2025)

pubpeer.com

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Reposted by Simon McGrath

ME/CFS Science @mecfsskeptic.bsky.social · 7d

1) Watched the EU workshop on Long Covid yesterday.

Prof. Evelina Tacconelli gave a useful overview of clinical trials. A striking figure was that 80% of randomised trials thus far were for non-pharmacological interventions, not for testing medications.

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Reposted by Simon McGrath

ME/CFS Science @mecfsskeptic.bsky.social · 7d

7) Then there was a panel discussion with patient representatives on the problems that millions of LC patients face. Diewke De Haen (Post Covid NL) said LC isn't the political priority it should be: "Everyone who doesn’t have it, doesn’t want to hear about it."

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Simon McGrath @simonmcg.bsky.social · 7d

That's useful data if medical records identify long Covid reasonably well. Seems a pretty low rate of unemployment/sick leave. I'm guessing (but don't know) these would be much higher for. ME

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Simon McGrath @simonmcg.bsky.social · 7d

That's way more trials than for ME. I'm not sure they've got any better biological leads in LC. Do you know if they've had any successes yet?

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Simon McGrath @simonmcg.bsky.social · 8d

Thanks.

Simon McGrath @simonmcg.bsky.social · 8d

I wasn't involved with the study. It looked at hospital diagnoses (probably mostly from ME/CFS/fatigue clinics) up to Oct23, likely v few long Covid cases. I believe 1m+ figures are estimates including LC cases assumed as ME. Try AfME or MEA for details.

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Simon McGrath @simonmcg.bsky.social · 12d

This is quite something: a second clinical trial targeting the CD38 receptor on plasma cells (apparently, it's also on some B cells). The other one is the daratumumab trial by Fluge & Mella in Norway (which is a different monoclonal antibody targeting the same CD38 receptor).

ME/CFS Science @mecfsskeptic.bsky.social · 13d

5) Scheibenbogen said they have funding for the plasma/CD38 study through private funding and a foundation. Sanofi owns the medication they want to trial (so the drug is probably Isatuximab = Sarclisa) and they are interested in testing it further with them.

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Reposted by Simon McGrath

ME Association @meassociation.org.uk · 12d

Lives We Cannot Live is now open at the OXO Tower in London!

We've asked visitors to share how they feel after walking around the exhibition. Scroll through the pictures to see what some members of our community have to say.

Visit the exhibition: https://meassociation.org.uk/g59o

#MECFS

IMAGE DESCRIPTION: Photo of a woman writing on a postit note, in front of a wall covered in postit notes. Heading - We asked visitors to share how the ‘Lives You Cannot Live’ exhibition made them feel. Photos by Jeremy Jeffs, Presented by the ME Association

IMAGE DESCRIPTION: Photo of peoples backs as they look at art on the walls: “Overwhelmed but also somewhat relieved to see my dad represented in so many other people”

IMAGE DESCRIPTION: Photo of peoples backs as they look at art on the walls: “Grateful to have someone bring to life my illness + others to see”

IMAGE DESCRIPTION: Photo of peoples backs as they look at art on the walls: “Humbled, emotional, reflective”

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Simon McGrath @simonmcg.bsky.social · 12d

Not just thinking the same direction, but two sets of results (using different mabs ) will add to the weight of evidence – or Will if they both have the same results.

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ME Centraal @mecentraal.bsky.social · 14d

🌍 No. 54 of the ME Global Chronicle is published!

It contains highlights from the past 3 months of ME events around the globe.

meglobalchronicle.wordpress.com/2025/09/24/f...

meglobalchronicle.wordpress.com/2025/09/24/t...

With contributions by @colleensteckel.bsky.social & many more.

#MEcfs

From the editors

Bezoek het bericht voor meer.

meglobalchronicle.wordpress.com

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Simon McGrath @simonmcg.bsky.social · 14d

Agree, it is a weak definition. I would include functional impairment, though that is implied by extreme fatigue. However, I'd set the time limit at 12 hours, not 24 hours because the data from the Jason, research is quite strong, and this threshold provides clear demarcation from MS.

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