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There is a legal requirement to obtain informed consent and that requires adequate information. How you read that may be less clear but participants should be pushing for meaningful information which would of course include the nature of the drug and the evidence base for trialling it.

So this fits with JCI publishing so much garbage in recent years.

This looks very paternalistic (maternalistic?). I would want at least some indication of what the 'treatment' is and why it is thought to be promising. Judging by the other thread material referred to this looks like a non-starter.

No it wasn't in any way validated. They already knew what the gene defect was in humans and knocked it out in rats. So the model was not to prove a mechanism but to see how a known mechanism operates. There was a very interesting finding. With one gene defect the people with no pain scratched...

For immunofluorescent experiments you really need to line up a set of test samples from patients and a set of control samples and stain them all in the same 'run' - i.e. at the same time on a certain day - because the quality of the reagent may change with lab temperature or time in the fridge...

Involvement of these genes does not make DecodeME any more or less likely to find something. DecodeME will only pick out genetic predispositions. It will not pick out shifts in gene expression later in life - but that applies to any acquired disease. If LNCRNAs were involved in pain perception...

It is not just redundant but meaningless. The term used is visual perception. As for auditory perception. Or pain perception. Science is about getting the right answer, not about theories being 'worrisome' (for whatever reason). Only the right answer will lead to successful treatment.

I was not referring to the perception of fatigue and pain but the processes of fatigue and pain perception (or the processes via which fatigue and pain are generated), which will be a complex multistep affair involving receptors, nerve fibres, nerve cell bodies, synapses, more nerve fibres, more...

What they do with the lab rats is get them dead, take out the dorsal root ganglia and do immunofluorescence on tissue sections! One could conceivably do that with an ME/CFS 'PM tissue bank' but getting standardisation with controls would be a nightmare. Yes, that is the claim this group is...

I think it would be a good candidate.

I heard a talk today about people who cannot feel pain. Some of them have genetic defects in genes that do not produce proteins but produce Long Non Coding RNAs. These seem very interesting. A gene 'normally' is a piece of DNA that can be copied to RNA which is then read off by a ribosome to...

We have very long threads discussing all of this @Sasha. You probably switched off for those. Cochrane was set up by a group of physicians who were worried about medicine being taken over by high tech Pharma as far as we can work out. That was a reasonable concern because big Pharma were...

But it is a step forward to know the reality - and to be able tell everyone else about it.

They are 'Cochrane'. The Editor in Chief was appointed by them. Their mission is to encourage therapies manageable in primary care.

It is interesting that Beentjes pulled out insulin resistance as going with ME/CFS. Maybe poor glycemic control is an aggravating factor if there is ME/CFS or LC present. I doubt that it is involved in the mechanism of the illness directly but things may turn out in an unexpected way.

Two phrases stood out for me: 'An important international scientific organisation' Sorry, not any more. 'Pockets of flourishing' That's S4ME that is - the real future.

The investigator is an author on this: Pharm Res. 2019 Oct:148:104450. Myalgic encephalomyelitis/chronic fatigue syndrome: From pathophysiological insights to novel therapeutic opportunities Gerwyn Morris 1, Basant K Puri 2, Adam J Walker 1, Michael Maes 1, Andre F Carvalho 3, Ken Walder 4...

As of 2025 I would say that any professional group, in the context of putting an opinion on the line, is just that.

Maybe it's a bit like the puma eyes motif decorating the porticos in Catholic Churches in Cajamarca (the place where Atahualpa was executed) in Northern Peru. The Cajamarcas never liked the Incas anyway and were happy to chant Catholic prayers as long as they could go on decorating their...

Human nature is complicated, Sasha.