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)...
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?
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...
Ok but still a bit strange to see an opinion piece like this that isn't based on a new study or news fact by people who have little expertise in ME/CFS research. Perhaps it was in response to the news articles about Maeve's inquest and the publication got delayed?
This is disappointing to see. None of the 4 authors have actually done much research on ME/CFS so I do not understand why they are commissioned to write a controversial piece like this. Perhaps some lobbying went on behind the scenes or is there someone at the BMJ who is entirely on Garner's line?
On the other hand: the AUC is measured against current diagnostic practices of ME/CFS which may not be very precise anyway in terms of pathology. Suppose only a small subgroup has pathology involving synaptic function, then the maximum AUC score would be quite low.
So perhaps what matters most...
Interesting point. Not speaking from expertise or experience but I would think these networks are sufficiently complex so that it still means quite a lot if multiple genes from a pathway are highlighted.
I suppose that having an abnormal result for one gene highlights the pathways it is...
Thanks. I think you might get better results if you don't mention ME/CFS and just ask it if there are any patterns in these genes that were found to be abnormal. Otherwise it will try to connect it to popular memes in ME/CFS research such as inflammation, mitochondrial dysfunction etc.
I tried...
Excellen thanks @forestglip !
On Twitter the first author Sai Zhang also briefly mentioned that they are working on the part of how the ME/CFS genes correlated with self-reported ME/CFS in the UK Biobank.
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