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I agree that there is always a risk of an assumption about what researchers think is right. But a study if the sort I am thinking of would say in black and white, and maybe in bold in the information for patients that the study was being done precisely because nobody has a clue what is the right...

That would be good and it is what the professionals say they do. But in terms of hard evidence how do yo do controlled trials on individuals - it is impossible by definition. The problem with 'personalised care' is that it is always theory drive - you theorise what would suit this person or...

Maybe you have never seen a child with arthritis sitting in a buggy.

Yes, it can be passive. There is no need to expend energy. Just to go through range.

I actually think the situation for children who are ill is quite different. An adult who is unwell is aware of a need to protect their capabilities. A child has no sense of responsibility for their own capacity in that way. So an adult with arthritis struggles to maintain the range of motion of...

I see no reason why not. Maybe there need to be several different sorts of studies with different emphasis. Measuring everything with high-tech equipment may not be practical for a general study but it would be for a more specialised one.

But you cannot get a clear pattern of what helps unless you instigate some form of help. And you cannot tell if that is what makes a difference without a controlled experiment. Otherwise we follow the BPS approach - guess what is helping on the basis of no controlled evidence. What to me is the...

There are certainly risks, although my assumption would be that plans would be tried out on people newly ill who had not yet developed their own plan. If plans are cross stratified, to include say four aspects of 'advice' then each subject would not specifically associate their grand plan with...

Yes, I think measuring activity needs to be done in a sophisticated way and as part of a larger package of assessments. When it comes to analysing progress with different plans it is probably not essential to predefine primary outcome measures in the way usually done for trials. If plans are...

It is not in any useful sense blinding. The concept of double blinding arose for drug treatments where patient and assessor are the key sources of bias. But for decades drug trials have been more rigorous than that. The treatment administrator has to be blinded too - so bottles of infusion came...

Now having said all that there is something that I realise makes my idea very tricky. If you are advised to do something and at the same time told that nobody knows whether or not the plan is useful - as would be ethically required by any trial like PACE (which nobody involved seems to have...

The trouble is that what we are concerned with, as I have recently been trying to make clear for NICE, is the psychology of gathering evidence. The irony is that the psychologists seem to be the least good at this. The need for either blinding OR objective measurement is to do with the...

Absolutely right. Except that in a sense I am not asking for a scientific basis because a scientific basis is a supported hypothesis. All we need is an evidential basis. The fact that gold injections can help rheumatoid arthritis is not a scientific fact so much as just something for which we...

I wouldn't want to be in either of this guy's columns. People like this are as much the problem as any one else - giving advice from a position of ignorance (familiar?). A sceptic defers to nobody. He (or she) thinks.

There is certainly significant harm that can come from rest without attention to problems. It is all too easy, particularly for for a child or adolescent, to end up with Achilles tendon contractors that will mean that they can never walk normally again. The warning in the guidelines is not...

I admit that I don't understand ME. I assume that nobody does. But it seems you maybe have not understood my suggestion. It has nothing to do with suggesting that ME is a sleep problem. It is theory free, as I said several times. It is simply about getting objective evidence for what sort of...

A doctor is now involved... Rather a lot of doctors have been involved for quite a long time. I am afraid that pinning hopes on Sarah Myhill with a flying cape makes the piece fall flat on its face.

To be honest what is there at present just looks like blather. OK, having someone with experience of looking after severe ME is likely to be sensible - but only if they know what they are doing and without any objective evidence on this it is difficult to see how they can know. With luck they...

I guess you measure not getting worse just by getting the same numbers on your activity measures. It is an interesting point that most clinical trials do not even consider worsening and staying the same is considered failure. But the situation is not unique. There are now a lot of trials of...

I think you are missing my point. I am suggesting testing plans such as sleep hygiene in a trial of the sort Keith Geraghty suggested - where the people giving the advice have no opinions about the value of the plan. Instead of health care professionals giving it you can hire some trial...