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UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and 11th March 2020
- Thread starter Andy
- Start date
I've been at the meeting today and wasn't impressed by Cochrane. I made the point to Richard that he should have tried to involve patients earlier and said that we wrote as a forum expressing interest in being involved. I sometimes get the impression that many in medical research (and Cochrane) see patient involvement as a tick box thing that needs to be done rather than really involving patients in the process. I pointed out that they should have been consulting patients prior to coming up with a plan rather than presenting a plan and saying we will have some patient involvement which is what they have done.
They really don't get that their process is completely broken and are still keeping the current review up. They talked about the new review taking 2 years and so the current review will be up for that time. Someone did raise the point of this being a real issue form the medical ethics perspective but they didn't seem to get this point.
On the positive side Richard came to talk to me after the talk to understand more. Although we were both rushing off. Rachel didn't seem impressed at being challenged judging by the look on her face after a one or two (mildly) challenging questions.
Ultimately I have no faith in them to do the right thing even where they are now in looking to redo the review is a state where they have been dragged kicking and screeming. I don't see Cochrane having an understanding of the issues which I think is reflected in the fact they havn't talked with patients.
Chris ran through the GWAS study which will be familiar to those who have followed the GWAS threads and Simon's blogs I think they cover most of what was said.
Kristian's talk was interesting in that he was explaining what the BioBank do (the one collecting genome info from 500,000 people not the ME one). It does look like a fairly unique resource in the UK capable of handling large numbers of samples. He talked about work being done on blood donars collecting 50,000 patient samples etc. Its a resource that is making Chris's GWAS possible or easier to do as they have all the set up to handle samples and provide matching controls.
This was interesting in that they are managing to build collaborations between various teams and fund smaller projects. One of the interesting points made was that they are doing things to help get young researchers involved such as including them as joint PIs in projects and also providing funding for people new to ME or aspects of ME to visit other research labs for a week or two to learn from wha others are doing.
One of the main things I took away from the talk was around the initiative helping encourage new people into ME research which I think is a really good thing.
Dolphin
Senior Member (Voting Rights)
Anyone recall what was chopped off? Can’t see any talk of a lack of objective outcome measures.
This was a really good video that they have done which I believe is online. They talk about the 2 day CPET test and what it means for PEM as well as some patients. Talking with a couple of researchers afterwards they were saying it made the issue really clear.
So I suspect this will be a really good resource to point people at.
That wasn't mentioned. They don't really get it.
I think the thing missed of was around selection criteria
Nina's talk was great (even though there were some computer issues at first).
Nina is doing a really good job at trying to address the poor state of medical education and look at how little doctors know but also to look at what information they need to know and she is also doing various talks to doctors to improve their levels of education.
Dolphin
Senior Member (Voting Rights)
Thanks. I can just about make out now that the bottom one says: "the criteria for diagnosis in the individual trials."
Tom Kindlon
Senior Member (Voting Rights)
Tom Kindlon
Senior Member (Voting Rights)
Caroline Struthers
Senior Member (Voting Rights)
They talk (down) to and (probably negatively) about patients (behind closed doors), but never listen to them or anyone who criticises their precious anachronistic methods. They pay lip service at best.
I certainly got the impression that they don't see patients as people who understand research. Although I did start a question by pointing out to them that it took a patient to tear holes in their analysis and they resisted doing anything about that for many years.
I also got the impression that if a patient also was a medical person that may be ok. After there talk I was talking to Richard along with Nina (who is a doctor and had given her education talk earlier) so Richard gravitated to asking her if she would be involved.
She talked about some of the real issues in creating a biobank in Australia where a large part of the population is very geographically spread. But they are using a tele-presence based nurse service to help with things like diagnosis. Also the pathology labs setup for blood testing is different from the UK so they are looking at that as a way to deal with some of the issues of wide spread geographic collection. The quality of the samples due to shipment issues was an important consideration here.
Natalie
Senior Member (Voting Rights)
Thanks. I'm delighted to hear that response from researchers. Josh has just put up a new website with the five finished videos on it - tow GET ones, two PEM ones - long and short and an Introduction to ME/CFS. There are a few glitches at the moment - a bit of a rush yesterday to get all the videos' finalised and the website working, so he'll correct them in the morning and I'll post the website address tomorrow and I've just made some cards to hand out to people tomorrow.
