Simon McGrath

The blog highlights the gene's immune functions, & we have the link to the infectious onset. Insomnia GWAS are huge, do you know the OLMF4 effect size? Depression has a substantial immune subgroup (its antidepressant resistant).

Also, you linked to a paper showing that OLMF4 correlates with illness severity in a number of diseases. There is evidence of a link to severity of initial infection in ME/CFS. E.g. Peter White glandular fever study (correlation with days of bedrest), Dubbo (correlation with severity of symptoms).

Thank you for this excellent blog. I thought you would've included OLFM4 as it has the additional evidence that's it's only significant in the infectious onset cohort, not the full cohort, reinforcing an immune role for it. It's also the only gene at that location.

1) We’ve just published our second instalment on the DecodeME results, this timing zooming in on the genes associated with ME/CFS.

Logo: Science for ME: Where science and ME/CFS community meet Post-exertional malaise (PEM) Key points  People with ME/CFS have episodes when they are much more ill than usual following physical or mental exertion. This is called post-exertional malaise, or PEM.  PEM is a hallmark of ME/CFS and is important for diagnosis  Activities like a short walk or reading a few pages may trigger PEM. For the most severely ill, even chewing may trigger it. For many, light, sound and other sensory stimuli also trigger PEM. Often it is the combined effect of all activities and stimuli over a day or more that triggers PEM.  PEM usually starts hours or a day or two after it is triggered and can last for hours, days, weeks or longer. During this time, a person cannot do as much as usual and needs to rest.  There is no effective treatment for PEM.  PEM is not the same as the fatigue and muscle soreness anyone can experience after more activity than usual.

5-page @scienceforme.bsky.social post-exertional malaise ( #PEM ) fact sheet
www.s4me.info/docs/PEM_Fac...

Headings:
-Characteristics of PEM
-Symptoms of PEM
-Exertion and other PEM triggers
-Effects of exertion that are not PEM
-Living with PEM
-Examples of PEM
-Research on PEM

#MEcfs #CFS #PwME

Key Points Question Following the COVID-19 pandemic, has SARS-CoV-2 circulation been associated with health-related absences from work and labor force exits? Findings In this nationally representative cohort study of approximately 158.4 million workers, rates of health-related work absences remained elevated after the pandemic and were associated with circulating SARS-CoV-2 and subsequent decreases in labor force participation by absence-affected workers. Meaning These findings suggest that COVID-19 may have created a new year-round baseline for work absences that is similar to influenza season conditions before the pandemic; policymakers should consider expanding interventions and data collection efforts to address the negative impacts of COVID-19 on the labor force.

US research:

"COVID-19 may have created a new year-round baseline for work absences...similar to influenza season conditions before the pandemic"

jamanetwork.com/journals/jam...

"Policymakers should consider...policies & actions that mitigate the spread of #COVID19"

#LongCovid #CovidIsNotOver

Thank you for taking the trouble to explain. Some of that is over my head, but I think I get the basic point: the study analysis is incapable of showing what it claims to show

That looks stunning, I'm glad you got out

Thanks – I'm not sure if I've followed correctly, but did they the statistical power to investigate about half a dozen parameters?

📢 IGNITE ME Journal Club Alert!
Join our next session for early-career #MECFS researchers on Oct 13, 2025, at 11am EST 🗓️

💡 We’ll explore the future of IGNITE ME and introduce a pre-print journal club concept!
💻 Zoom: 940 7510 9828 | 🔑 972035
#IGNITEME #LongCOVID #ResearchCommunity

I think this has a serious flaw. it asks if you pace and if this affects the amount of PEM you have (it does, that's why we do it.) but then scores each PEM symptom on Frequency as well as severity, giving low scores if pacing works, even if severity v high. I this could skew results/ interpretation

Haha!

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).

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.

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

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.

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

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

Oh great

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

Do you know why they tagged that neurotransmitter?

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

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.

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

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

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.

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

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...

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.

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."

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

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?

Thanks.