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Interesting paper. Well worth a read, even by those not interested in the biological details. Most of the paper gives an overview of what we know about ME/CFS and what interesting observations need to be addressed in a theory of ME/CFS. If I understand the gist of it, ME/CFS shows signs of...

I appreciate all the thoughtful comments on this paper but with only 5 ME/CFS patients and 5 healthy controls, I don't think it's possible to get useful results, not matter how you analyse the data.

I remember that show, classic!

Abstract Background: Evidence suggests that early identification and treatment of CFS improve patient outcomes, reduce the risk of prolonged disability, and prevent unnecessary investigations. The Pathway was developed and implemented in January 2023 to standardise the diagnosis and management...

I originally quoted the wrong section here. This is what I was commenting on, from the paper:

Perhaps they lack cooperation of a clinic where sufficient ME/CFS patients go to? I think their previous study was also based on online surveys and their publication on Long Covid was a systematic review.

Strange that the donor remains anonymous because that makes it impossible to assess potential conflicts of interest. Also a bit difficult to see who would be interested in spending (I suspect ten thousands of dollars) on a study that analyses what ME/CFS patients say on Twitter. The long...

Reference 48 is the Wessely study that found no association, but all other studies did find an association: Chronic fatigue syndrome after infectious mononucleosis in adolescents - PubMed Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective...

Wrote a brief summary on social media: 1) Interesting collaboration between the Iwasaki team and the Bragée clinic in Sweden. Their conclusion: "when evaluating previous pathogen exposure, we found that ME/CFS and healthy individuals did not differ in exposure to most assessed pathogens." 2)...

Assume these are the main results:

Yes it's on my list but might take a while before I get to it.

Also note that the difference in costs on family spent caring in itself was not statistically significant between groups. But because these costs were estimated to be enormous, this difference (which could have occurred by chance) determines the economic analysis and make the intervention look...

Made this quick overview of costs for the control group based on Table 2 in the paper: I think it's important to value the unpaid care that family members give to patients, but assigning it 50% of all costs including welfare payments, productivity losses, medications, healthcare use, etc...

Looking at healthcare use and welfare payments, the difference do not seem large. The main difference driving costs is time spent caring by family members which was $2668 more expensive per participant for the control group. This is an enormous difference given that the cost of treatment was...

Seems like quality of life as measured by the EuroQoL EQ5D-5L did not show a significant difference. In the supplementary material it also seems that employment dropped from 41% to 29% after specialist physiotherapy.

Seems like pretty much all the secondary outcomes had null effects as well. SF36 physical functioning (primary outcome) SF36 physical role limitations SF36 bodily pain SF36 general health perceptions SF36 energy and vitality SF36 social functioning SF36 emotional role limitations SF36 mental...

Looks interesting, good to see a focus on methodology. Most of these experiments, however, have not been able to detect clear signals of ME/CFS pathology or have not replicated by others. So perhaps new ME/CFS researchers should mostly try to use new and other methods rather than picking up these?

Had a look at that report about the Leeds unit (reference 12), but it was about only 11 patients.

They have also made their python code public: https://github.com/risklayer/long-covid-mecfs-costs-germany/tree/main/code

Seems like a useful report in collaboration with the company Risklayer which specialises in risk analysis and management. Perhaps useful to create a separate thread to discuss it in more depth? I've tried to make this summary for social media...