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My real concern is that people who don't have ME/CFS will see these things on the net and convince themselves they have them. Judging by my experience with other diseases like RA and lupus there are usually more people who think they have a chronic disease than actually have it.

No. No more than it is useful to have a quick check whether somebody has emigrated by finding flights to Norway that were never actually taken. The solution to bad methodoogy is not to be slightly less bad. It is to ignore it. That is what I did for RA and it worked out very well. There is...

I suspect a lot of wishful thinking is going on here. People want to believe exercise helps and it certainly can give one a lift, but I am not aware of any evidence for it being beneficial long term.

I agree that using details of symptoms to categorise could be useful but pulling stuff from electronic records is not a questionnaire. And health records should not be expected to carry answers to questionnaires rather than a physician's considered assessment of whether a symptom is present or...

I don't think this matters. Formal publication used to ensure wide dissemination and that the study was as well written up as could be expected. Those are already sorted for studies like this.

This is the article put out on BBC as showing why we all have brain fog!

It is very disappointing that this article comes to the right conclusion but appears to be completely unaware of the main reason for doing so - none of the studies showed reliable evidence for an effect regardless of diagnostic criteria. I find it astonishing that so many people don't understand...

No, we have a huge cohort undiagosed because GPs don't believe in the diagnosis of ME/CFS. PEM is a nicety. When I became aware that ME/CFS was a real disease it had othing to do with defining PEM. It was the whole picture that convinced me.

Yes, but we don't know that CCC criteria are better for anything in particular. We like to think so but we have evidence as far as I know. If it is a matter of trying to describe a different conception then researchers should be free to do that as often as they feel justified by their use of...

I don' think we would call that a false negative. If the data are reliable these are valid negatives. There might be two forms of FM or this might be a relatively indirect index of some process yet to be identified.

And as soon as there is an official questionnaire out there everybody will take it as the gospel and ask leading questions of patients who will discuss it on social media and you end up with a huge cohort of people who have PEM because they heard about it. This is a real problem. We have seen...

But when you say 'we as patients' you are chiefly talking of a very select group of intelligent self-critical people who can survive on a forum like this where a lot of the threads are highly analytical. The majority of people might find your concepts unintelligible. And how do you test for...

Yes but how exactly do you circumscribe this 'typical PEM'? Is there a condition of chronic fatigue? If defining these other conditions is just by 'not involving PEM' we still have no gold standard. My main point is that i can see, like you, that there might well be better questions, but that...

Maybe, but how to you establish that it is 'better'? And is using questionnaires justified? It might introduce all sorts of biases. And the bit you quote from me was not referring to research!!

My impression is that 'imputation' is used to cover more than one inferential process, at least one involving individual SNP profiles (imputing intervening SNPs) and another making use of population weightings of SNP forms (imputing risk genes from minihaplotypes of SNPs).

No, reversible. It lasts about six hours. I am not awre of evidence for long term damage. It might possibly occur but I doubt anyone has ever done a valid study.

When it comes to other illnesses, I don't think there is any need to try to distinguish a special PEM for ME/CFS rather than other diseases. If PEM is some sort of immune signalling following exertion, or even if it isn't, I think it likely that people with tuberculosis, lymphoma, MS, or malaria...

I have reservations about trying to create a questionnaire. When it comes to making a diagnosis in real practice questionnaires are rarely used and from what I have seen suggested simply wouldn't be appropriate. The golden rule is that you start by asking the patient to describe what their...

Not really. We have already learnt the lesson - the UK is seriously under-resourced and wastes a good bit of what it has on a crazy 'internal market'. Everything is uphill. But sometimes you get there.

My experience of seeing people for the first time with an illness is that they are only likely to want and be able to digest one or two central pieces of information. More detail comes with further visits. I am not sure why a person should know what they need, either. Much of what they are...