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I was not intending to get involved with drugs, which would require controlled trials of their own. And, hang on, I am not asking people to give advice here - because the whole point is that we do not know what advice to give, any more than Dr Chalder does. We need to test options. One of the...

So at present one of the few things in the advice in the guidelines is sleep regulation. If that is no use we need to establish that. How do we know it has not led us anywhere. Nobody has found out whether or not it affects long term progress. And there is no implication that there is a sleep...

This might be true but it needs testing before any advice is given. Help with cooking is pretty much bound to be helpful at the time but the question is whether it makes a difference to long term progress. If not then there is no point putting it in the advice literature or NICE guidelines.

Yes, we have already thought about long term actometry and I am all for it. But it will not provide any information about what advice to give. I am not suggesting imposing anything here - it is interesting that everyone seems to be reacting to this. I am just suggesting that various types of...

I am not looking for behaviour modification. I am looking for evidence for one or other sort of advice being sound. Why would you be uneasy with such a trial? Don't we need to know what the answer is? We cannot assume standardisation is bad without evidence, any more than assuming it is good. At...

Yes, I too thought J TB might be a very useful source for starters here. I also suspect that health care workers in ME teams may have a lot of very useful suggestions to make. The reason these suggestions do not appear in literature may be that the literature always has to be politically...

I sense theory creeping in already! But still interesting thoughts. I think I am looking for recommendations that can be described succinctly and do not require any interpretation - such as what constitutes available energy. And I am not suggesting that we should be thinking that routine for...

I have been thinking a lot about the evidence base for ME/CFS management. There are some good negative studies but a positive evidence base is hard to find, as we know. At the NICE scoping meetings there was a consensus that what could be justified in the current situation was more ongoing...

77,000 would be 1.75%. 10,000 is probably more realistic.

I agree with @TigerLilea and Vogt. The paper sound like commercial hype. 'We measured everything and found a few things' - what's so clever about that? We can be pretty sure that if you genuinely do an 'omics' approach 99% of the money spent will be down the drain for routine clinical practice.

Yes, but Ramsay's fatiguability might have a central mechanism. Ramsay may have thought that the 'fatiguability' implied that there was a problem in the muscle itself but I am not sure he did. If he thought the problem was an encephalopathy that would be central. The problem in polio is central...

I think the problem goes deeper in that this is not so much a meme as a popular prejudice, worldwide, and for as long as history. The BPS model is just a fancy word for the man and woman in the street's view that PWME think they are ill but they aren't. So the question is what hope is there if...

Very nicely presented summary from Carolyn.

I agree that there are ethical and human rights issues here. I intend to raise this with the NICE guideline committee when I give testimony - which will be in September.

The conclusion is: Treatment should be tailored to the individual, be multidisciplinary and involve education, treatment of comorbidities and support for family. That seems fair enough except I am unclear what multidisciplinary has to offer. It is a bit like saying amen at the end of...

Then the discussion of treatment concludes rather limply with: Whilst there is some debate about treatment approaches, a pragmatic and individualised approach to the management of CFS/ME remains key. Debate appears to stem from a concern that advocating psychological therapy implies accep-...

Yes, it is now available through a College subscription. I am most of the way through. The description of the illness, epidemiology, clinical features etc all seems quite reasonable if a little uncritical in one or two places. Lack of good evidence for common claims is frequently noted. The...

Yes but orthostatic is more precise than postural so really it should be OrTS

It is confusing but presumably if they are the same people they must have the same illness! My thought is that postural orthostatic tachycardia is a useful term but not POTS. POTS just seems to mean people with postural orthostatic tachycardia with features of ME. There is no 'separate disease'.

Keuter's mistake is to assume that there is something called a psyche over and above the physiology. He himself admits that there is nothing more than physiology. There is no extra 'mind' with 'free will' in our brain that can cause things in a way other than biological. You might be able to...