MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

[bicentennial]

Maybe the organisers can provide a bulletin and follow-up afterwards, to meet the unplanned, unmet demand - once enlightened by such unexpected, underestimated interest.

AI has been used in online meetings to record and transcribe for internal use. That might allow wider provision of an expurgated transcript. Problem is when audiences do not notice or consent

 

[bobbler]

Does anyone know anything about these two patient reps? I have come across Opal some time ago from a pretty bad book she self published on behalf of an organisation calling itself the ME/CFS Alliance which has a website but no list of activities or names of people running it and seems to exist purely to sell Opal's book. I gather she was and probably still is active on the CMRC patient rep group. I hope she is more clued up now about the research concerns of pwME.

I'm getting things coming up for a Barley-McMullen - can I just check it is definitely McCullen?

 

[bicentennial]

The fact that they are not planning to record the day also suggests that this is seen as low priority.

It all suggests this is all too obviously a high priority still being inexplicably and mysteriously avoided - failing which - minimised

Spoiler: Top Secret

Those.. were.. the.. da..ys, my friend

we thought they'd ne..ver end

Harking back to 2015, is Professor Hugh Perry still here? He was at the MRC in 2015 as:

* a Member of the Research Collaborative Board

* the Chair of the Neurosciences Board

Any way he may still be "determined to see high quality research into the neuro-pathology of ME / CFS"...

Post-exertional malaise in ME/CFS: Medical Research Council

- announces new neuroimaging research, 6 October 2015

Our medical adviser, Dr Charles Shepherd, comments on post-exertional malaise (PEM) and the new Medical Research Council (MRC)-funded neuroimaging study that was announced at the Research Collaborative Conference in Newcastle on Tuesday October 13.

Dr Charles Shepherd

* Myalgic Encephalopathy Association (Hon Medical Adviser),

* UK CFS / ME Research Collaborative (Board Member)

16 October 2015

xxx

THE NEW RESEARCH

---

What has not been done so far in the investigation of PEM is to look at what happens to brain networks before and after an exercise challenge in ME/CFS – which is where this new study fits in.

Three scientists

Dr Mark Edwards, a neurologist at the Motor Neurosciences and Movement Disorders Unit, UCL Institute of Neurology

Dr Neil Harrison from the University of Sussex

Dr James Kilner at University College London

– will be carrying out this study.

xxx

In relation to the fMRI scans, these will look in particular for evidence of activation in key brain structures such as the dorsal insula.

Overall, I believe this is a very sound and welcome piece of research that should help to increase our understanding of what is happening in the brain in PEM.

Thanks are due to Professor Hugh Perry, a member of the Research Collaborative Board and Chair of the Neurosciences Board at the MRC, for his determination to see high quality research into the neuropathology of ME/CFS taking place

TRANSCRIPT OF THE PRESENTATION FROM DR EDWARDS, PREPARED BY RUSSELL FLEMING, CAN BE FOUND HERE

xxx

PS

The MEA funded 4 medical students to attend the RC conference.

We also helped to fund the cost of bringing two overseas speakers – Øystein Fluge and Jo Nijs – to the conference.

@Russell Fleming fyi the Google Document page was moved from the link given here for your 2015 provision - where you transcribed the neuro-imaging medical research presentation

 

[Sasha]

I'm trying to make sense of what was said about MRC funding at the end. Gareth Wells said that grant acceptance rates for ME/CFS were the same as for other diseases - is that true? Is there public info?

And somebody said that bias against ME/CFS is in reviewers, not in panels, I think? I didn't realise that there were reviewers in addition to the people on the panels (who I thought were reviewers).

Not sure how to square those two pieces of information (or possibly speculation in the latter case).

 

[Adrian]

I'm trying to make sense of what was said about MRC funding at the end. Gareth Wells said that grant acceptance rates for ME/CFS were the same as for other diseases - is that true? Is there public info?

And somebody said that bias against ME/CFS is in reviewers, not in panels, I think? I didn't realise that there were reviewers in addition to the people on the panels (who I thought were reviewers).

Not sure how to square those two pieces of information (or possibly speculation in the latter case).

There are very few applications as very few researchers and given the known difficulties then the more speculative ones don't get put in. The panels don't see those with bad reviews either. Proposals are sent for review and then the panel look.

 

[Sasha]

There are very few applications as very few researchers and given the known difficulties then the more speculative ones don't get put in. The panels don't see those with bad reviews either. Proposals are sent for review and then the panel look.

That's very interesting! Do we think that it's the reviewers rather than the panelists who are biased? Is their bias a BPS bias? If so, how do we get them shifted?

 

[Adrian]

That's very interesting! Do we think that it's the reviewers rather than the panelists who are biased? Is their bias a BPS bias? If so, how do we get them shifted?

I suspect that may be the case - not necessarily BPS it can be as the proposals are more exploratory as there isn't a science based to build on. But the MRC are very defensive so really hard to tell (they have talked about some process changes). I keep going back to the problem of not enough researchers creating research proposals - there is no incentive to move into ME from other areas where other areas are easier to get funding.

 

[Kitty]

I suspect that may be the case - not necessarily BPS it can be as the proposals are more exploratory as there isn't a science based to build on.

It's hard to see what's wrong with SequenceME from that point of view, though. Yet Sonya said the outcomes they were waiting on were all from US funding sources.

 

[V.R.T.]

It's hard to see what's wrong with SequenceME from that point of view, though. Yet Sonya said the outcomes they were waiting on were all from US funding sources.

So the MRC aren't funding it then? Absolute insanity. It's peanuts for them in terms of potential payoff.

 

[V.R.T.]

Does anyone have a summary of the talks today? Particularly interested in what Danny Altmann had to say about WILCO, and any updates from researchers generally on future research projects and collaborations.

 

[Adrian]

It's hard to see what's wrong with SequenceME from that point of view, though. Yet Sonya said the outcomes they were waiting on were all from US funding sources.

It may just be that its a huge amount in terms of MRC funding.

 

[hotblack]

I wasn’t able to listen in so look forward to any summaries of what was discussed. Was anyone able to take notes?

Always interesting to hear people mention differences between MRC v NIHR funding and wonder how much is linked to heir respective departments and remits (DSIT vs DHSC). I”d be interested in understanding more.

But also incredibly disappointing if they won’t fund SequenceME. 7 million really isn’t very much at all given the scale of what we face.

 

[Adrian]

So the MRC aren't funding it then? Absolute insanity. It's peanuts for them in terms of potential payoff.

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.

 

[V.R.T.]

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.

Oh right, thats disappointing about budgets. Are the MRC not funding any of it or do we think they have given anything towards it?

Did Sonya give any indication as to whether they thought it likely they would secure enough funding to proceed?

 

[Adrian]

I wasn’t able to listen in so look forward to any summaries of what was discussed. Was anyone able to take notes?

Always interesting to hear people mention differences between MRC v NIHR funding and wonder how much is linked to heir respective departments and remits (DSIT vs DHSC). I”d be interested in understanding more.

But also incredibly disappointing if they won’t fund SequenceME. 7 million really isn’t very much at all given the scale of what we face.

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 targeting.

I linked the precision life talk + that they are doing research as a company (Innovate UK funded) where they had subtypes based on genes. I suspect this is a talk they had shown before.

Chris and Danny were good of course.

I was less convinced about service research.

The young researcher talks were interesting in their use of electronic medical records (which I think must have useful info but can be hard to use and sort good from bad). I particularly liked the talk from Edinburgh Dr. Audrey Ryback (Chris's team I think) but bringing in maths/comp sci to work on patient data recorded in scotland (and perhaps using patients identified in Decode).

 

[Jonathan Edwards]

I was there throughout and did all the networking I had hoped to do.
I can do a resume when I have recovered.
I recorded the talks I thought might be of value.
A pity that the Leicester researcher looking at X chromosome inactivation was not there but she has hardly started so would not have had data.

I'm trying to make sense of what was said about MRC funding at the end. Gareth Wells said that grant acceptance rates for ME/CFS were the same as for other diseases - is that true? Is there public info?

The grant acceptance rates tell us nothing. The MRC people are using this argument but it is irrelevant.

 

[Jonathan Edwards]

And somebody said that bias against ME/CFS is in reviewers, not in panels, I think? I didn't realise that there were reviewers in addition to the people on the panels (who I thought were reviewers).

Not sure how to square those two pieces of information (or possibly speculation in the latter case).

There is no point in trying to do statistics on this. All that matters is whether or not reviewers trash good projects before they get to funding panels. There is evidence that they have done. The MRC folk are nice enough people but I saw no indication that they had any insight into how the funding problem should be solved for ME/CFS. But then I have always found the MRC to be populated by people who live in a fantasy cocoon that often produces pretty unexciting research.

 

[Jonathan Edwards]

Does anyone have a summary of the talks today? Particularly interested in what Danny Altmann had to say about WILCO, and any updates from researchers generally on future research projects and collaborations.

Altmann didn't really produce any data. He gave a general review - maybe because there isn't much to say.

 

[Jonathan Edwards]

There were two clinical presentations around clinical services, one at UC and one from Sivan (HERITAGE). In the absence of any valid data on efficacy for anything there seemed no point. I didn't get the impression that they understood what the central questions were.

 

[Jonathan Edwards]

Chris Ponting gave a very sharp presentation on the core data from DecodeME and explained the next steps in terms of pinning down imputed genes and looking for other SNP signals that did not pass the initial filter of top hits. He also pointed out that a number of genes are replicating across studies although not for some cohorts, which probably indicates that there are still problems with subject selection.

The message was that spending time doing further analyses should produce new useful information over and above the top line data in the preprint.

Funding is clearly still a huge battle but I got the impression from Audrey and Chris that things are not falling up. They have 10-11 people working on ME/CFS. There is money coming in from other sources. They deserve bigger funding but the work is carrying on.