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Yes. I don't think there is much chance of any useful dialogue with the BACME people but I think it is important to try to get the charities to take a legitimate stance on this. That dialogue needs to be based on the lack of reliable evidence, not NICE compliance.

I think trying to argue that this is not NICE compliant is likely to end up boxed in a corner. NICE fudged this. The wording provided allows almost anything. I think this should be resisted on the much simpler argument that there is no reliable evidence base for it. If this policy had been...

So the other bottom line is that you cannot work this out logically. It is just the way medics talk.

Yes, keep your post up. This is an issue I have aired before and put into a book I half wrote that is sitting on my computer desktop festering. It is an important part of the confusion. I came to realise just how problematic adjectives are when I did an MA in philosophy. I tried to work out why...

This is the same old utopian view. Thought police are bad, we need better thought police. Get over it and let people say what they are going to say - but yes, in public, with names. There are. no robust protections in a dog eat dog world.

Being a good guy isn't much use if you don't understand complex immune dynamics. The problem with ME/CFS is that it is an order of magnitude more difficult than RA and lupus. You need people who can think very clearly. (Fortunately, some of our members are pretty good at that.)

I absolutely agree. Iwasaki seems to have no clue.

The epitome of the British paternalistic health care model. Or maybe parentalistic since there is no longer anything specifically male about this behaviour.

This makes me worry that whatever you hrow at an omics system you get nerve genes coming out, and again it seems that it is not that they are too high but rather low. I am struggling to see an intelligible story here.

If anyone wanted a defining example of the word disingenuous for the Oxford English Dictionary this would be it. They seem to have missed the fact that pacing up has no evidence base in trials whatever. The basing in lived experience is pure manipulation. The charities need to make up their...

No, I think that is what she would have said and it makes sense. But that is because to medical professionals a psychiatric condition is quite different from a psychological condition. 'Psychological condition' essentially means psychosomatic or neurotic rather than a biological psychiatric...

Well, hospital webpages will be curated by lay people! They are full of medically illiterate stuff.

For folk needing summaries because they can't cope with lots of text, that's not a bad one.:)

The sad thing is that although they seemed to have found immunological differences in ME/CFS subjects it seems to have been mostly an absence of signals, which doesn't help us much. I wish they wouldn't use terms like dysregulation and disruption and just give the data.

But the ICC enthusiasts are effectively claiming that ME is a neuropsychiatirc disease. Maybe they should stop and think about that. Neuropsychiatric diseases are things like: Parkinson's disease Huntingdon's disease Progressive supranuclar palsy Cerebral MS Alzheimer's disease Niemann Pick...

But why? Neuropsychiatric disease is recognised as a source of disability and deserves just as much care and research as any other. What I think the ICC people have to explain is a simple contradiction in their claims. They claim: 1. That ME is different because it is a neuroinflammatory...

But that is the problem we have been discussing!!

I don't think Twisk has contributed significantly to research, beyond some opinion articles, and where his name is on research papers they are on 'ME/CFS'.

That seems a fairly typical muddle of factual history and misinformation. It is pernicious to imply that somehow 'physical' diagnoses deserve more respect than psychiatric ones. This is not what people should be arguing about. The problem has been that the BPS people have placed ME/CFS in a...

OK, the CDC updated so I guess 1994 criteria are out of date. The ICC might seem to have been based on CCC but were clearly an attempt to row back to "ME" and to claim a neuroimmunological basis for which there was no evidence. I don't think it is acceptable to most researchers and as far as I...