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Indeed, the first sentence you quoted from me goes with the ones before, not the one after!

I will do my best.

I know some who do. I can think of some on the NICE committee but I don't want to name names. I understand the pessimism but when we have Luis Nacul being appointed to head a large facility in Canada I think there is hope for a change. There are professionals who are totally theory neutral and...

Yes, that does seem a sensible option!

It looks reasonable but what I find disappointing is that I think I could probably have invented it myself without any special experience - just from knowing the symptoms and what PWME find difficult. If expert advice is to be worth anything as truly expert I would hope to see some unexpected...

Hi @Manuel, Good of you to come on the forum. As you may know, I am a retired professor of immunology with a special interest in B lymphocytes (and the use of rituximab). I understand your enthusiasm for looking for an immunological cause for ME but I am not sure things are as clear as you...

I can see John's point but my memory is that the Dean or Vice Chancellor directed David's queries to Paterson in the first place, presumably expecting her to act as a solicitor would for a client whose behaviour was considered by another party to be unreasonable.

@dave30th, I haven't had to time to look at all the material in detail but it does not look to me as if your questions last time asked for opinion or sought to engage in debate. Rather it seems that they asked for answers relating to Bristol University policy on issues of probity of significant...

I agree with Adam here. There might be a common pathophysiology but since we do not know anything about it that may not help much. Moreover, the point of the exercise is to find out in practical terms what might help or hinder someone with particular living problems. And in a way people have...

Except that as far as I know there are no studies comparing impact of advised sleep plans - if only to show that 'sleep hygiene' should be removed from guidelines.

Sleep is certainly complex but I am not convinced there is any great value in studying changes in different sleep levels in ME as an index of whether or not a plan for self-management is helpful. That would only make sense if we knew the importance of specific sleep states to health in the...

I have no problem with exploring activity or exercise outside of the theory-laden context of GET.

My guess would be that this sort of problem could be reasonably easily dealt with either by souping up the analysis software or back-checking with reality as you have done. The camera would be able to tell you were on the sofa rather than in bed!

I don't think there is necessarily any need to analyse sleep phases using EEG etc. Recent work seems to suggest that the traditional sleep levels by EEG are not that useful and that sleep states are much more complex. I am pretty sure that either a video camera or perhaps more acceptably a...

An interesting guideline. It reinforces my impression that NICE is producing to sorts of guidelines. One lot is for things often treated with drugs which is strict on evidence - to reduce cost. The other is for things where there are no drugs so it makes sense to use therapist-delivered...

If there is I am not aware of anything formalised. It is just that professionals recognise the problems that occur if mobility is not maintained and various actions are standardly put in place.

Yes, my memory is a bit vague now but one referee required the removal of two crucial paragraphs about problems with blinding. I did not remove them.

Just that they seemed to deserve priority. `The idea would be equally applicable to moderate or ,mild I guess.

I agree that attempts to mitigate problems need to be acknowledged. But if one wants to give benefit of doubt in relation to a trial of this sort I think one needs to look around and see what the evidence is that the authors are sensitive to the level of problem. I don't know a lot about this...

Well we are already getting patient input. The next stage ought to be to get representative patient input from a community based cohort of patients. The UK Biobank cohort might be a start. Caroline Kingdon is constantly getting input from these people.