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Nudge into a direction that has harmed people and without any evidence to back it up. The fact that you have yet to respond with a piece of evidence to back up your arguments should concern you.

There is a difference between taking accounts of symptoms from a large number of people (and clumping) to describe a disease and making anecdotal claims that a particular treatment works. For treatments you need objective evidence of change particularly when treatments are unblinded as...

Actually he has been attacking PwME especially those who don't agree with his point of view. He has done that using his links to the media and pushing a message out that PwME are attacking him. Just as an example one journalist, who I believe is a friend of his, quoted half a tweet of mine on...

I don't believe that. We did a survey of clinics and they don't have data to say that (they don't collect it). So when you say patients recover in large numbers where is the evidence (its not from the clinics). Or do you simply mean that patients stop going to the doctor as there is no point...

If anything I would say that doing what he is doing undermines his professional success. I assume he has made his reputation pushing for evidence but is now saying ignore that go for anecdote. There have been trials - they were very badly designed - hence NICE said low or very low quality...

More anecdote rather than actual science. It is worth saying that when trials are run they show null results on anything that goes beyond a subjective measure. Garner should know and understand this - that is his profession - but clearly he doesn't which makes me very concerned about the UK...

[edit] Ok my working was unfair. But I think you have made your views clear on including people with lived experience in research and that you are against it. I think you have stated that a number of times. That is the point about having PwME involved so that wrong impressions can be corrected...

You did make an accusation about what two people said - you didn't say that it was an impression or interpretation you are making. So I'm not being pedantic. I realize you feel there is no place for listening to patients in science and don't like that 'fashion' but I would point you to what...

There are lots of patient orgs including ones set up with one or two people. I do think we should be trying to help the main patient groups get things right. But there are ways to do that with positive engagement (i.e. think what are the best ways to influence a group).

Patients saying things do not cause patient deaths and children being taking into care it is ignorant doctors who are doing this. I realize it is easy to blame patients for misinformed and prejudiced doctors who make decisions.

So when you said That was wrong.

I think many doctors have prejudices and they notice things that support their prejudice and not those things that confirm their beliefs. Educating doctors is a massive issue. I think educating researchers is probably something that would be good - to explain things like what ME is (what the...

I'm pretty sure that {a named patient} never said that (I will check with her). She was calling for more research and for researchers, patients and charities to collaborate to get more research going. PwME (including many here) are saying that they should be listened to but that is a very...

They do have some proposals around this. I'm not sure when they will action them,

In terms of the MRC we have been trying to talk to the right people and there is no movement. It feels like there won't be unless there is a political will to change. Its not helped by big cuts of the research council budgets (coupled with large increase in university overheads I think things...

I suspect a lot is linked to the different departments. With the delivery plan there has been ministerial attention from DHSC and so more has happened. Other departments have not really engaged.

It could be interesting from the perspective of experience in running trials with ME with patients at home. She is from the quadram inst. (Simon Carding) and I think they are trying to do some trial (can't remember what on)

I thought that just represented a lack of time so he was giving a review of interesting things going on and promising stuff that should be followed up on

Sorry I didn't take notes and some ground was covered very quickly. Dmitry's talk was really interesting. He seemed to be taking data from the BNF on side effects seeing which ones were ME (or LC) like and then tracking back through which drugs caused side effects and what those drugs were...

I don't think its peanuts for them I'm not sure what the normal project size is for the MRC. Also I think the research councils budgets seem to be cut.