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I think that analysis misses the mark: Like Hilda's blog, the focus is on the diagnostic criteria, the selection of cohorts wider than just people who have PEM. I guess there isn't just one ME/CFS community, because this one here generally has a different ongoing concern. Many of us here are...

From the supplementary materials, this interesting Jaccard similarity heat map. The dark blue columns on the right are for altered taste and smell. They are rarely reported with any other symptoms, only with each other - the little orange squares in the bottom right corner show they are fairly...

On contraception: There were only 70 people in the combined hormonal contraception category, and it's only just significant, and that's after adjustment in a regression for things like age and time since joining the app*. In the raw data, there was a trend but it wasn't significant. There...

This looks to be a nice study, well conceived, well written I thought. Great that people are contributing their data; great that Visible is actively facilitating studies. I thought this was worth noting: It's in Table 1 as well. I don't know how being disabled is defined, but I would have...

If anyone is making a complaint to Cochrane about the relabelling of a review and calling it an update, that paper with Garner and Soares-Weiser among the authors would be an excellent reference to cite when suggesting the update did not follow good practice.

That paper about when and how to update systematic reviews says: So, according to a consensus paper that Karla S-W signed up to and that had Paul Garner as corresponding author, an update should incorporate relevant studies. It did not, despite there having been some e.g. Magenta. That...

The linked paper is When and how to update systematic reviews: consensus and checklist Hilarious I guess we can say that in the case of the relabelling of the 2019 review as 2024 without changing a word, the expectation was that the update would indeed influence the credibility of it...

Yes, do we know anything about Karla S-W that might indicate why she is so supportive of the Larun et al review? Does she have connections with any BPS proponents or insurance companies? Does she have any experience of ME/CFS?

Do you know when the decision to make the new review was made (which K S-W announced as being necessary because the methodology of the Larun review was outdated, etc)? Was it at the same time as the Larun review was published, or did it come later?

As I said, we know that it can take a little while to get used to new inputs. In the examples you give, the adaption period is short. Just perhaps, adaption doesn't happen at all for a very small number of people. But, that impact would be very specific. Do we have any credible evidence that...

:thumbup: It's so context driven, isn't it? Imagine a person with chronic diarrhoea. They would want to know they would be close to a toilet most of the day. But, that says nothing about the level of spontenaity they prefer in other aspects of their life. If you primed the person with...

Oh, and thanks very much @Jonathan Edwards for the planned letter! Excellent.

Actually, didn't the decision to replace the review only get made under K SW's watch?

Adding 'Cochrane' to 'then Editor in Chief, David Tovey', would make things abundantly clear. I take your point about brevity, but the subsequent Editor in Chief also identified the 2019 review as not being fit for purpose (e.g. used old methodology, not relevant to current definitions of...

YMMV = your mileage may vary

It sounds as though there are a few possible things going on. I'm not an optometrist; I may very well have written things below wrong. The glasses won't fit so well on your face upside down, so the lens is held a bit further away - so perhaps the prescription was just straight out wrong. And...

Just wanted to pick up on this. I think a lot/all of what people attribute to 'functional' i.e. the product of thought, is actually the result of other things that the attributors don't know yet. For example, here's an AI view on why someone might have better vision when glasses are placed...

Sounds interesting, that could be a valuable resource. Is there anything we can do to help progress a study on the samples?

Questions 1. I do not like to lose control over my life 2. I like to know what awaits me 3. I like to plan everything in advance, so that I don't get any unexpected surprises 4. I find it necessary to control my surroundings 5. I feel uncomfortable if things don’t go as planned 6. I want...

So people who a higher than average need for control might be the sort of people who, when faced with a life-limiting diseases might seek out studies to take part in, to try to understand what is wrong with them? See that reference to the Keen et al 2022 suggesting that people with CFS and FM...