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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...

Here are some reasons to think that the % of ME/CFS cases among Long Covid patients will be substantially lower than 50%: In the ONS survey, only 19% of those with self-report Long Covid symptoms, said that their ability to undertake their day-to-day activities had been "limited a lot"...

In the 3 studies from the Charité Fatigue Center (Haffke 2022, Sotzny 2022, Kedor 2022), the included Long Covid patients already suffered from persistent moderate to severe fatigue and exertion intolerance. So this was a highly selected sample, already quite similar to ME/CFS. It's also...

All three of the studies by Leonard Jason are just online questionnaires shared on social media. ME/CFS cases were determined by the (abbreviated) DePaul Symptom questionnaire without clinical examinations. I also think that the Jason & Dori 2023 and Jason & Islam 2022 describe the same...

Yes, I think there are other issues: The 58.7% for the Twomey 2022 paper seems to refer to the proportion of LC cases that had post-exertional malaise, not ME/CFS. Chronic Fatigue and Postexertional Malaise in People Living With Long COVID: An Observational Study - PubMed (nih.gov) In the...

Looks like a misleading review, most of these studies are surveys or come from single-centre clinics so have a huge selection bias.

Rodney Grahame himself highlighted CCI in this paper with Henderson: Comment on "Quantitative measures of tissue mechanics to detect hypermobile Ehlers-Danlos syndrome and hypermobility syndrome disorders: a systematic review" - PubMed (nih.gov)

From what I heard she was only offered bolus feeding through a NG-tube. There are a lot of patients (who are often given the diagnosis 'gastroparesis') for whom this doesn't work at all. Guidelines recommend a NJ, PEG-J or gastrostomy to provide sufficient nutritional support for such patients...

Also noted this paper where Alan Hakim is senior author. Presentation and physical therapy management of upper cervical instability in patients with symptomatic generalized joint hypermobility: International expert consensus recommendations - PubMed (nih.gov)

This paper gives a simplified overview of the hypothesis of how joint pain could lead to chronic and widespread musculoskeletal pain. Placing joint hypermobility in context: traits, disorders and syndromes - PubMed (nih.gov)

Hypermobility of the spine: Ehlers Danlos and neurosurgery, the route forward in the UK? A 2023 editorial on the problem but it doesn't say much. (11) (PDF) Hypermobility of the spine: Ehlers Danlos and neurosurgery, the route forward in the UK? (researchgate.net)

In adults, I couldn’t find that many studies. Larsson et al. 1995 This Swedish study on high-technology industrial plant found that 26% of workers with spinal hypermobility experienced back pain compared to 14% in those without hypermobility. ‘Spinal hypermobility’ might not be the best term...