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It is hard but it isn't really the topic of this thread, which is influencing.

It would be absurd even to raise the suggestion.

I don't think it is just a major contribution, I think there is a key difference between the madness of saying you are sensitive to light and use of beliefs by family. I am pretty sure it is the deciding factor in safeguarding in many cases. I think many do. But for most of the cases we hear...

It seems pretty clear from Sonya's talk that the MRC is not expected to fund SequenceME. That is inexcusable if so. My local genetics friend said that funding it is a no-brainer. But the MRC never funded a whole lot of things it should have. They are an establishment club who follow on, not a...

This really belongs to the new thread but nobody is wanting to criticise individual patients for being attached to terms and models. The criticism is of those who then claim to know and to preach to others. In addition to the professionals and formal patient organisations there are networks that...

I think the answer is rather different. Ordinary people often behave in counterproductive and irrational ways. It isn't their fault and it isn't abnormal, let alone pathological. As Bernard Shaw pointed out, since prehistoric times people have wanted medicines and doctors despite everything...

Yes, I have been told this by well known senior NHS ME/CFS clinicians, with specifics. The misinformation is clearly being cited by families and as far as I know is the main reason why safeguarding is considered relevant. I may be wrong but I am not sure what else would lead to safeguarding...

That is what is so worrying. I feel that this misinformation has been accepted as the norm for too long. The MEA currently seems to be in a mess, and as Hutan says, going backwards. AfME has its problems but at least Sonya will engage in sensible debate and has shown she is prepared to respond...

Or suggesting that Covid-19 clinics are run by a bunch of idiots. Studies like this are interesting in that they show the importance of confounding diagnostic ascertainment noise likely to beset questionnaire-based ME/CFS genetic and proteomics studies.

The treatment seems to involve sending specially prepared cells into a brain already full of inflammatory cells. Maybe they are supposed to be nice quiet cells but what if they mutiny?

Jo Cambridge ignored it and did her research, but a ban was proposed. I didn't but I think Evergreen made some good suggestions - or somebody did.

From what Trish says it sounds as if people are thinking about this anyway. I suspet there needs to be a website with a home page with links to popular questions that could guide readers to some of the myth antidotes. Having a webpage with information is quite a shift in style though and if you...

I think that is uncalled for Adrian. As a medical scientist I based absolutely everything I did on listening to patients. They told me the nine clues that got me to the answer. But some patients do not appear to understand that it is not our job to listen to them for the sake of it. We listen...

I have good reason to think that is misleading. I am talking about contributing to the causation and I am pretty certain that is the case. There are networks of people passing these ideas around. We need to accept some uncomfortable truths if we are going to get anywhere.

Only if you are very pedantic about grammar. They both talked about lived experience and one talked about its level of validity. In fact I think we had a third person going on about 'lived experience' before we got started on the science.

I don't have his email and I am not sure I would want to bother him at home. He must be about 85.

I am not sure I would want any more cells in my brain if I had MS.

It may be worth waiting until we can see the new analyses before plunging into this again. Things look to me very precise and to do with endogenous biology.

Nobody is talking of policing but if misguided patients are putting out stuff that contributes, however unintentionally, to deaths and children being taken into care people need to realise what is going on.

{The named patient} talked of lived experience. It was not her that made the point about its validity. But to be honest I don't remember what she said. Everyone at the meeting knew the importance of listening to patients - that is why we were there. The scientists from other disciplines I...