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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...

For what it is worth here are some of the negative cross-sectional studies I found in western children. Unclear why most of the studies investigating this relationship were in (very young) children. Mikkelsson et al. 1996 (Finland same study as El-Metwally et al. 2004) 7.8% had Beighton score...

Have been looking into the relationship between hypermobility on the one hand and pain, disability and health on the other. In other words: do people with hypermobility have more pain and worse health dan people without hypermobility? It seems that there have been quite a few population-based...

Thanks, much appreciated.

Thanks. I do find this a strange situation. They do not list hypermobility as one of the measurements and they haven't published anything on this. If they have data on this it's probably the most valuable data on the topic, so why not publish it? Perhaps it was only assessed on a small subsample...

Apologies for picking out this statement 2 years later, but does anyone have a reference for this? I saw it mentioned a couple of times in various threads including by @Jonathan Edwards but can't find it in papers of the UK ME/CFS biobank. I'm not sure that the UK ME/CFS Biobank assessed...

I have this as well.

Couldn't they calculate a ME/CFS prevalence estimate in those with and without Sars-Cov-2 infection?

I don't know either. I was wondering how they did this - perhaps they recruited controls with the intention to match patients. Anyway, interesting analysis. Ok thanks, I've posted it here: https://www.s4me.info/threads/the-biggest-2-day-exercise-study-blog-me-cfs-skeptic.40267/

The study discussed is this one: Cardiopulmonary and metabolic responses during a 2-day CPET in myalgic encephalomyelitis/chronic fatigue syndrome: translating reduced oxygen consumption to impairment status to treatment considerations - PubMed (nih.gov) It has its own thread here...

Twitter summary: 1) New blog post about the largest 2-day exercise study to date. Big thanks to the authors, Dr. Betsy Keller and colleagues, for uploading the data to http://mapmecfs.org so that others can analyse and explore it. 2) Here are the results for peak oxygen consumption (VO2) which...

"The largest study on repeated cardiopulmonary exercise testing in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) could not find a strong effect. Declines during the second exercise test are also present in many healthy controls and do not correlate well with functional disability...

Conclusion In conclusion, the largest and highest quality study on 2-day exercise testing did not find strong evidence of impaired recovery in ME/CFS patients. This suggests that the effects are smaller than initially thought and that the procedure has difficulty in accurately differentiating...

Published a blog today, summarizing the data and analyses made here: https://mecfsskeptic.com/the-biggest-2-day-exercise-study/

Conceptually I find it difficult to see why a low value on day1 would make it easier to have a large percentage increase. The way I see it each participant has a hypothetical mean, the average value they would get if they were tested infinite times. There will be some variation around that mean...

Good point, it's probably not a coincidence that the effect is that clear with those 4 outliers removed. For the matched pairs and with those 4 outliers removed I found a Mann-Whitney p of 0.088, which is not significant but it comes close.