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Arbitrary, but intended to indicate that more than one event is involved. The initial period around a trigger needs to be over. Immune responses are about the slowest events we know of - evolving over as much as a month, but not much more than that. The idea is to consider what proportion of...

Agreed. I think the Bayesian theoretical framework probably gets in the way here though.

I can see what he thinks he is trying to do but I don't personally see a theory cast in this sort of language as being useful. To test it properly you would need to be able to predict exactly what was wrong at the neuron level. Since we are a million miles away from understanding how global...

I think the paper makes a cogent point. If the basic problem is low blood volume then that is neither autonomic failure nor dysfunction. It is a fluid balance failure. The autonomic system is working fine and just trying to cope. It isn't even failing. What has failed is the amount of blood. We...

The abstract of this one is just empty drivel. It has no scientific content.

I am afraid that these days a 'top most accepted theory' is just what is in fashion in the buzzword circuit. I have been personally involved in brain research for twenty five years. We have known that the brain predicts since Willaim James's time in 1890. It is nothing new. The term predictive...

It is hard to say but I doubt CAR-T is the optimum approach in the long run. It is too cumbersome.

I don't understand this sentence. presumably if neck hyperextension caused problems there was pre-existing 'iinstability' to allow that t o happen. At least in the abstract it is not clear what they mean by CCI. It slaos does not say whether they had pre and post images to show a change in range...

Yes but if it did you should feel unusually well! If the expectation is bad and the input isn't then you should feel extra good on a predictive coding model.

I am interested to know how often ME/CFS starts off severe or very severe and whether in general it becomes so later on.

My point is that it gives the wrong answer so is worse than useless - incoherent. It also falls into the usual trap of assuming that you can explain disease using normal regulatory models. By definition normal regulatory models predict normality not disease. A disease model has to involve an...

But simple explanations without any supporting evidence are of no clinical value. And, as we have discussed at length on this forum, the predictive processing model invoked by people like Mark Edwards actually makes the wrong prediction about clinical outcome, so is worse than useless. Best to...

I doubt this has anything to do with humans. For a start, in human autoimmune disease there are usually no abnormally autoreactive T cells demonstrable. Mouse autoimmune disease is by definition experimentally contrived, whereas in humans it arises at random. Starting with that difference it is...

Everything I have seen so far with reports of CAR-T in autoimmunity we saw with ritux in 2000. Maria Leandro's lupus cases included lengthy remissions. The first RA case had five years remission. But CAR-T probably does have a good chance of being more potent. The problem is that it involves...

Sorry, but no, for hEDS and MCAS the diagnoses are meaningless so nobody can usefully be said to have them. For the other diagnoses the great majority of people given the diagnosis do not have it as far as I can see, even if the situation is more nuanced. I quite agree that the problem is...

Interesting to see the definition of disingenuous: not candid or sincere, typically by pretending that one knows less about something than one really does. I know what @Peter T meant but maybe it wasn't this? Sometimes people really believe what they woof, despite knowing even less than they imply?

I disagree. In these cases we can say quite simply that these people do not have these diseases. That is what is being discussed. Whether this is 'the main issue' is irrelevant. It is interesting to see this now being discussed openly on social media. And those making the point are clearly...

It's where I got to after spending ten years talking with a load of very insightful patients who pick me up when I am wrong and feed me material I never knew existed. Stick around because we need people like you, @Robius.

That seems a very reasonable response. I don't agree with the viewpoint entirely but the naysayers are just proving the basic validity of what he is saying. These people do not have hEDS or MCAS.

I am not sure I can make much sense of this but surely the emotion just reflects being pissed off that someone didn't look after you properly? I guess that is what @rvallee is saying. What people want prioritising is safe effective care surely?