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I'll try to rephrase. Most researchers suspect there are more EDS types or similar heritable connective tissue disorders that have not yet been explained on a molecular basis. To find these, it would be useful to have a selection tool or category for patients who have abnormal clinical signs...

The idea was that people who have several unusual signs might be a better target to search for new gene defects. One could give points based on how unusual or specific a feature is, but the adding up of signs wasn't the main point I wanted to make. I was mostly concerned with people who have...

That these people have a lot of clinical signs that physicians associate with known connective tissue diseases. If researchers wanted to search for new EDS types, new mutations causing a connective tissue disease, wouldn't it be useful to have a group of suspected cases to test your hypothesis...

Thinking some more about the hEDS diagnosis. The main problem is that it attributes a lot of unexplained health complaints to (a supposedly rare) connective tissue disorder without sufficient evidence to back this up. On the other hand, there are likely a lot of other EDS or other genetic...

Sounds interesting but the perfect separation in such a large sample almost seems like to good to be true. Especially considering that pain and hypermobility form a continuum with HSD and hEDS using an arbitrary cutoff. The paper writes:

Would be interested in hearing what other think. Several of the 2A features seem quite subjective. A physician who believes in connective tissue disease being the underlying cause of many unexplained symptoms might be able to diagnose a lot of patients with hEDS using these criteria. Soft...

At first I thought these features were quite rare and specific because the description uses a lot of medical terminology. But after some searching for their prevalence, most seem quite common. I've tried to make the following overview (apologies for the awkward formatting: it's because tables...

Had a closer look at the hEDS criteria published in 2017. https://pubmed.ncbi.nlm.nih.gov/28306229/ The Ehlers Danlos Society provided this useful overview of it. https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf The authors tried to make these more...

This looks like the main data with no reduction in the PASC group. A previous study reported reduced levels.

Looks like a useful paper for GET and CBT trials in ME/CFS.

Had a closer look at this review. The meta-analyses are presented in the supplementary material here: https://onlinelibrary.wiley.com/action/downloadSupplement?doi=10.1111%2Feci.14318&file=eci14318-sup-0001-AppendixS1.pdf Here's an overview of the main results for the ME/CFS meta-analyses. Most...

Not sure what the added value is of machine learning techniques in this context. EDIT: I have little to no experience with this so would be happy to hear if someone could explain the use case a bit more.

This Dutch paper is interesting because the authors used a representative sample, split them up according to Beighton scores and then looked for other differences between the groups such as collagen biochemistry. They found that those with joint hypermobility and symptoms had more skin...

A lot of people are unhappy with the Beighton scale from what I can tell. This article gives a good overview of the main criticism: https://pubmed.ncbi.nlm.nih.gov/33738549/ It was once used in the 1970s and then people chose to use because it was already used a lot.

Added a separate blog post that discusses problems in previous 2-day exercise studies. Twitter summary: 1) New blog post where we look at previous studies on 2-day exercise testing in ME/CFS. 2) ME/CFS patients often have a significant decrease in their workload at the ventilatory threshold...

Agree, well written, thanks for sharing.

I think this Canadian survey shows similar results: https://health-infobase.canada.ca/covid-19/post-covid-condition/summer-2024-report.html ME/CFS case definitions usually require a substantial reduction in ability to to daily activities.

I've quickly tried to recreate their analysis in R using the meta package (random effects with Freeman-Tukey Double arcsine transformation) but with some changes in the data: I've only used one estimate per study. I chose the CCC because that seemed to be used the most, otherwise the IOM...

Agree, I would avoid naming a proportion or percentage, but one could use these studies to argue that several researchers have noted a high percentage of ME/CFS cases among Long Covid patients or something like that, to get the message across. It was not my intention to be too harsh on the...

Another issue: based on the forst plot (figure 3), it seems that the authors inserted multiple estimates from the same study.These are based on the same data and participants but simply using different ME/CFS case definitions. So these estimates are not independent. It's like counting the same...