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Some more references: Bias caused by reliance on patient-reported outcome measures in non-blinded randomized trials: an in-depth look at exercise therapy for chronic fatigue syndrome: Fatigue: Biomedicine, Health & Behavior: Vol 8, No 4 Assessment of the scientific rigour of randomized...

I think Leptin (LEP in figure 2B) is also showing up again, as in the study by Beentjes et al?

The lifelines cohort is very valuable. I wonder if they could retrospectively try to make the definition of ME/CFS more stringent to get something below 1% prevalence. They could for example make the CDC symptom inventory items for PEM, unrefreshing sleep and concentration problems mandatory...

I suspect the ME/CFS prevalence in this cohort was largely based on the CDC symptom inventory. This Wiki for the Lifelines project provides some more information: https://wiki.lifelines.nl/doku.php?id=cfs_diagnostic_score https://wiki.lifelines.nl/doku.php?id=fatigue_cdc

The supplementary material states: So I suppose we have to wait until that other manuscript is published until we know more how the Fukuda criteria were assessed (my guess is through questionnaires rather than a medical examination). The paper itself does not comment on the remarkable high...

The authors clarify that they could not distinguish between genetics and shared environments. For most disorders the recurrence risk ratio was similar for first or second degree relatives and the authors argue that this suggests that the recurrent was likely not due to a shared environment...

If I understand the data correctly, having one (or more) first-degree relatives with ME/CFS makes it 2.23 times more likely that you have ME/CFS compared to the general population (which includes those with first-degree relatives with ME/CFS).

They said they evaluated the Fukuda criteria yet 4.7% of the more than 150.000 people in the cohort had ME/CFS (Table 1)? That seems an unreasonably high estimate.

I suspect it is this study: Familial coaggregation and shared familiality of functional and internalizing disorders in the Lifelines cohort, 2025, Bos et al | Science for ME

Thanks for tagging me. Interesting that cerebral blood flow and small fiber neuropathy showed no significant differences. The sample size was really small though. Almost as if the added the conclusions of a different paper, it doesn't match what the study actually found.

Interesting study. Sad that the concordance between the different ME/CFS pieces information in the UK biobank is so low. For example: 2,312 (0.46% of the 0.5 million biobank participants) self-reported a clinical diagnosis of CFS (C1). But of these, 28% also reported 'good' or 'excellent'...

Yes it would be useful to have a review on this from a researcher who can comment on the quality of measurements and possible confounders.

I think the main ones are already mentioned so do not have much to add. Perhaps NK cytotoxicity as Baraniuk tried to argue that null results were due to different handling of samples? Meta-analysis of natural killer cell cytotoxicity in myalgic encephalomyelitis/chronic fatigue syndrome - PubMed...

Seems like this study captured the main themes quite well. The struggle between becoming an adult and remaining dependent because of illness, the disbelief by doctors which cause an erosion of trust, feeling blamed for your illness, the disbelief that a young person could be so ill, trying to...

Looks like a worthwhile project. Suspect there is a great need for this. Interested to see how this will develop.

Oops, sorry for the confusion. Looked for another reference figure: in the PACE trial the GET group also increased with around 35 meters compared to the control group on the 6MWT.

Thanks for pointing that out, was indeed misinterpreting the graphs. Given that the PASC-ME/CFS cases seem to be similar to other ME/CFS cases, it indeed suggests a doubling of new cases in that period because of Long Covid. The PASC-ME/CFS cases, however, already seems to decrease from the...

The 6 minute walking distance seem to have increased with 53.8 meters in the intervention group and 19.2 meters in the control group. So the difference is around 35 meters, which is around the minimal important difference and similar to what recent Long Covid exercise trials found, for example...

Data came from the National COVID Cohort Collaborative (N3C), a collection of EHR data from 83 health partners representing 21.7 million patients. But there were only 5781 cases in this dataset. That's like a prevalence of 0.027% which seems very low. In comparison, the R53.82 group...

The ME/CFS cases do not seem to have increased much or am I reading the figures incorrectly? The rest of the paper focuses mostly on their machine learning algorithm that tries to model ME/CFS and compare it to Long Covid.