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Maybe you have missed the main topic of conversation on this forum for the last four years? Which is that symptom improvement being undeniable in the eyes of clinic doctors has been grinding PWME into the dirt for decades and we need something real. If we accept this is bona fide then all of...

And those are parts of the problem. My job here is to try to help people distinguish real science from fashionable talk that sounds like science to the general public. I don't see real science here. And I don't speak as someone wedded to starchy establishment views. I wouldn't be here if a was.

I don't see any need for hindsight. It is very obvious that people are being exploited right now. The chances that apheresis is of any use for Post COVID problems are close to zero and there is no evidence. Selling people procedures like this is fraud - plain and simple.

I think it is closer that that. Adequate trial design is primarily an ethical issue. If there weren't people involved scientists could be allowed to do things as badly as they fancied. The problem with poor methodology is the impact of people's lives - which is an ethical issue. I used to be on...

"When it comes to long covid, traditional models of care and research need to move pragmatically, adaptively, iteratively, and rapidly, considering dissemination and implementation in parallel" I am sceptical that this says anything useful I am also worried by the last bit. You get things right...

I was straying into politics way outside the realm of ME, which is not allowed, so I can't elaborate I am afraid!

Thanks Ms Landmark, it is always useful to have further evidence of your lack of understanding of science. It may be useful for my book too. Interesting how remarkably similar to some comments from Royal Colleges these are. Whose voice do I keep seeming to hear in the background here? Someone...

I am worried that this is all a bit too high tech and not very feet on the ground. Inflammation was judged by complicated counting of immune cells. I would have preferred to see some old fashioned pathology actually showing inflammation. The gut is normally full of immune cells and counting cell...

It does, but since there isn't any actual inflammation in ME it can presumably only be an indicator of some 'memory' process that could involve other adverse signals. It might explain enlarged tender lymph nodes, which are not strictly speaking inflamed, just active.

Indeed, @strategist, it is no more complicated than that. The last thing we want is an argument about who is best at doing GRADE right.

I find this all hard to follow. I see no particular need tp retire any terms. I am simply saying that if CFS means anything useful it means ME. As far as I can see in any situation where people want to change the coding structure historic coding is going to end up clashing with the new. And if...

I think it may be a red herring to worry about the discrepancy between the NICE and Cochrane grading of the evidence. The key point is that both are committed to using an invalid system, GRADE. The discrepancy just shows that not only does use of GRADE lead to results that are unrealistic, it...

I can see that but it makes no sense. There is no other syndrome as far as I am aware. People with chronic fatigue of unknown cause that do not have ME have no particular reason to be put in a syndrome. I think medical categories should be based on what makes sense rather than what has been...

It would be quite difficult for unhelpful beliefs about your peritoneum to aggravate peritonitis though if you have never heard of the peritoneum (or at least don't know where it is) - especially if you are a mouse!

I find all this very confusing and I don't have any strong opinion on how to classify. What I would say is that I do not see any place for the term CFS unless it is used for ME. People who do not have PEM, in simple terms, do not have a 'syndrome'. They may have chronic fatigue of unknown cause...

I doubt anyone much gets better with GET. I think the diagnostic uncertainty is a red herring - after all in PACE the patients DIDN'T improve. As Peter Barry has said, forget the diagnostics, the level of benefit if there was any was too small to be cost effective or meaningful. If it is...

yes

It looks potentially very interesting. I wouldn't call this a specific immune response, although it would be fair to call it a tissue-specific inflammatory response. We already have evidence of something a bit like this in humans in terms of inflammation in one joint inducing symptoms in the...

This must be why people who cannot find a kebab shop at 2.00 in the morning tend to bump in to lamp-posts?

Somebody should suggest they are made honorary fellows of the Royal College of Physicians. It is almost as if they are parroting that RCP statement. The more I hear from Wyller and his friends the more I realise how little they understand.