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So presumably they are doing another genome screen like DecodeME, but yes, the question is where the genetic component calculation comes from. I thin there may have been a twin analysis in the US from a huge cohort about five years back but I heard no more about that and it seemed that the...

I wonder what that is based on. These things usually require something like monozygotic versus dizygotic twin studies. If heritability was 40% I would have expected some risk loci to have shown up on the smaller screens done so far, although there might be reasons why not.

This is the problem. I haven't really changed my mind about my reservations about this Open Letter but at least for the minute it looks as if it may be me that is trying to provide some sort of draft protocol. I have been talking to most of the relevant people and will talk to more...

There isn't any research for any group as far as I know. The whole approach is alien to me as a physician. I only met anything like it during my period of training in a rehabilitation centre forty years ago. The whole concept of treatment being 'agreed' with the health care professional is...

The real result of PACE of course is that if there is any benefit at all from popular therapies it is too small for it be possible to distinguish it from natural history in routine care.

I agree, Robert, they are convinced of the usefulness of the treatments. No excuse in not being more critical, but nonetheless it is their belief.

I have just re-read this thread and realised that we went through all this in so much detail a year ago and then seemingly got nowhere! I have done a bit better in terms of contacting relevant people this time. I am somewhat overawed by the task of doing something useful but I will see if I can...

As Nightlong said, the Th1/Th2 balance idea was a barmy speculation with no evidence base in any disease in fact about three decades ago. I had hoped it had finally died out. Whatever ME/CFS is it ain't Th2 I would say. Not even Th1, but something to do with CD8s. To me this is all the worst...

What a mess. How to carry on as if nothing happened it seems. What on earth has outdoor wilderness movement got to do with NICE guidelines for ME/CFS?

Thanks @Joan Crawford. Some information on alternative diagnoses might be useful. Part of the problem is clearly that people classifiable as severe ME/CFS can also arguably be classified under various psychological labels. I would like to find a way of pointing out that this makes no difference...

There is some discussion going on between a group of relevant people in the UK. I won't give details but various people are trying to get somewhere. I think some form of document needs to be published that sets out the reality of the situation and a model protocol, even if it is not initially...

Interesting that they have shared genetic variance when so far we have no genetic data for ME/CFS!!

Absolutely not semantics Duncan. Basic medical science. There is no way that ME/CFS and Long Covid in their current meaning would be 'separate diseases'. That would be to imply things the terms are not designed to mean. In fact if you twist them that way the combination is impossible because...

Agreed. As an immunologist I have no idea what it means. There are technical terms for T cells that have gone through a maturation process to what has been called 'exhaustion' - associated with the winding down of a T cell response - but they are unlikely to be relevant here. One or two...

Yes, but by and large not simply depletion of metabolic pathways, usually where there is an innate or adaptive immune response. But also where there is cell damage and activation of repair. The odd thing is that pretty much all of these are associated with easily measured biochemical markers...

There aren't two discrete diseases with those names, at least as used now. ME/CFS is a clinical syndrome term. Long Covid is a term that implies causal ascription or at least association. Both can apply without any sense of duplication, just like pneumococcal infection and pneumonia or car...

Duloxetine has some very nasty side effects. It seems to be one of those drugs developed for one thing, found to be largely toxic and useless and then tried out in other situations, where it is found to be largely toxic and useless. Sort of scraping the barrel until it leaks and the wine drips out.

Generally speaking you want a canvas to be evenly primed, either with rabbit size or some modern emulsion foundation, and to have some texture but no other features - certain not irregularities. Maybe the AI picked the wrong metaphor?

I think this is where things get blurred. Infections can leave the gut with changes leading to specific intolerance for things like milk. Tropical infections were known to produce long term malabsorption when I was a student - tropical sprue. My own gut problems are associated with malabsorption...

Yes, could be very useful.