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or we should be expecting better of trials in general...

I haven't read the study yet, but the one below by Newton et al found that HRV was inversely correlated with activity levels. It seems possible that low HRV is just an indicator of sedentary behaviour. Physical activity intensity but not sedentary activity is reduced in CFS and is associated...

Here's the CFS bit: Colour me skeptical. I looked at that Castro-Marrero trial and there was only a tiny effect, and the study was sponsored by a supplement manufacturer. We have a thread on CoQ10 for ME/CFS.

I'm not entirely sure that Hilda actually said that Cochrane are reluctant to update the review, but it certainly isn't unreasonable to think it, or to say it. We have pages and pages of threads on this forum that set out how Cochrane has been reluctant to update its ME/CFS reviews. People...

Inference of ‘they brought it on themselves’; a lack of grounding comparisons The abstract states ‘Thirty-seven percent of the CFS group were overweight and 20% obese.’ This, together with the conclusion that low levels of physical activity is a perpetuating factor, leads the reader to...

I started looking at the paper closely and I've got to say that it's a mixed bag. The discussion is a lot more nuanced than the abstract. Here are some notes I started. I'll park them here in case I don't get back to the job. Selection criteria The paper uses the Fukuda criteria to select...

A short critique of this paper would be good to be included as one of the pieces of evidence for the Cochrane Exercise review - it illustrates a number of the problems that are common in BPS research suggesting that exercise is useful in treating ME/CFS.

Just noting, for the sake of completeness here, that we established on the Cochrane Exercise review thread that Kay has had permanent role with the Association of Royal Navy Officers since Feb 2021. Further discussion about that, and the extent to which the criterion of 'a history of interest...

retagging as I didn't get the tag right in the last post. @Hilda Bastian

@Hilda Bastian, please read this research report and the commentary here. This is the sort of thing that we are up against. And the lead author is one of the people you have put on the Cochrane review writing team. Perhaps Julia Newton would not repeat the issues that we see in this 2011...

Thanks Nightsong. I think there is probably a problem of ceiling effect and clustering. In this group of only mildly affected people, probably few would tick the 'extreme' level, but most would be feeling that they have pretty significant problems with a lot of the items on the scale. I mean...

Maybe Cochrane could lead the way by not using studies that have no scientific value in their reviews e.g. those relying on subjective outcomes in unblinded studies to prove a treatment works. Cochrane is a long way from being a leader for good science right now though. @Hilda Bastian

Hilda, that is what we need you to understand. I think Cochrane is using you to provide a veneer of real engagement over a pretty rotten process. It's not a matter of selecting 'reasonable' people from all sides in order to find some sort of compromise. Those who push curative CBT and GET and...

I just want to reiterate what Trish said, as it may seem that I have been going after Kay rather doggedly today: This is not personal. Kay seems like a nice person, one who has achieved much in her life and has done much of that while sick with ME/CFS. But I don't see those things alone as...

I'm not sure what you mean here. Are you suggesting that it's not preferable for consumer representatives to have a good understanding of research issues relevant to the illness they are representing? I had an experience with a large funding process where there were two consumer reps with a...

https://www.arno.org.uk/commander-kay-hallsworth-joins-arno-rnoc/. Feb 2021. Just for info, a permanent position with the Association of Royal Navy Officers. Not that that is a problem, just that there is a very clear ongoing link to the UK defence forces.

I think it's fine to ask for ME/CFS-related information about patient representatives on a review that will affect the management of patients around the world. If the representatives are not widely known and it's not yet obvious why they are qualified to do the job, I think it's reasonable to...

This is particularly nasty, suggesting in the abstract that people with CFS are somehow causing their ill health by being overweight. Nowhere in the paper are the percentages for healthy controls given. There's just that brief comment that the control groups' weights were not significantly...

The Newton activity levels paper just has the initial of the person, and the paper you have linked MSEspe is a different paper. So I don't yet know for sure, but I agree that it would make more sense for the co-author of the Newton paper to be a Kate Hallsworth - a physiotherapist. But that...

J.L. Newton 1 J. Pairman 1 K. Hallsworth 1, 2 S. Moore 1,2 T. Plo TZ 3 and M.I. Trenell 1, 2 1. UK National Institute for Health Research Biomedical Research Centre in Ageing & Age-related Disease, Institute for Ageing and Health, Newcastle University, Newcastle, UK, 2. MRC Centre for Brain...