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While that may be a worthwhile argument to make, I can see why focusing on the specifics of me/cfs and framing things in a way in which people may listen is what is important here. Overcoming the wider orthodoxy may be something others can and should do but I’m glad Chris is picking his battles...

Some more info on participants Dr. Cindy Boer is a geneticist (some discussion in relation to ME/CFS GWAS projects in the Netherlands here) and Assistant Professor at Erasmus MC in Rotterdam with a focus on osteoarthritis and genomics, see here for research focus and publications and a short...

I think it may be time to study the clotted cream cure…

Agree very much. So much of these things can be out down to humanity’s desire to instil order and control over things which are just chaotic. The universe, nature does not have justice or fairness. It just is. When we cannot cope with that, cannot accept that things just randomly happen...

Links to info on a few names, I’m just guessing these are the right people so if anyone knows better please correct me! But it all looks seriously impressive. No doubt a lot of work going on behind the scenes to get people involved. Great to see. Dr. Hanna Ollila thread and partial bio from...

Why would we have known by now? I guess a lot hands on ‘central role’ and ‘regulation’ too. I can see ways they could be involved but not necessarily hold a central role, maybe just part of the larger picture in some way.

Looks really interesting and great to see international collaboration and building upon the great work coming out of Edinburgh and the team there. Some familiar names and some new ones, which is also always good to see.

I’ll be interested to see the full paper. I’ve been involved in a number of CureME projects over the years and interacted a lot with both Caroline and Ella, who seem to really understand and engage with patients well. Andy clearly covers the experiences many of us have had with Sarah Tyson...

This is the other thing isn’t it, designing a trial for a very specific thing completely misrepresenting it and saying it works for all things. I don’t doubt there are a group of people who can be helped by being ‘less bothered’ about things which cannot otherwise be changed (or some people do...

They probably got the hump!

What about when they’re forced to swim while being restrained?

Ah, well there are a few camels up around Xinjiang. Guess they’re looking for an export market opportunity!

I can understand the push for a diagnostic test, patients want it to prove something which is otherwise disbelieved so charities push for it. But I don’t think having a test alone would change or improve things for us much. And when you add in sensitivity snd specificity you just introduce more...

I think it’s fair to say the sort of trial described is not the only way to test effectiveness of an intervention but we do need to test effectiveness and I’m not sure about some of the framing here. A lot of money is put into to talking therapies in the NHS and I think they have a place and a...

I have vague memories of this but do not know and am not sure I now or ever properly understood it or why it has this effect. Could you or @ME/CFS Science Blog explain any more?

I’m hopelessly biased about evidence. The argument could be made that we need to try these things to get evidence. But the problem is we have years of evidence that they don’t work and yet they still keep on being returned to. It’s like saying people are biased about the efficacy of vaccines and...

It certainly ticks all the boxes. “somatic manifestation” “psychophysiological” “exacerbated by stress” “repressed emotions” “fear-avoidant behaviors” “desensitization” “approach, rather than avoid, physical activities” Worth adding that this is not from some fringe organisation but being run...

I’m all for nice things are nice and helping people in any way we can but it staggers me that this stuff gets funding and classified as a clinical trial and wrapped up in a way which legitimises it as an approach. That we don’t see the same for other significant diseases is telling, how many...

Weren’t people who were overweight more likely to suffer worse outcomes from a covid infection itself? Maybe there’s something there rather than then results being linked to LC itself? Not so much weight itself but the changes to glucose production or insulin resistance subtly changing how the...

I included TRPM3 in my promoters and enhancers search from that study and, yeah, nothing much. What I’ve found interesting is how far away promoters and enhancers for some genes can be, nowhere near the location of the gene in some cases, and my scripts sadly don’t pick those up. But looking...