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The CMRC's new biomedical focus and big ambitions (my new blog)

Discussion in 'General ME/CFS News' started by Simon M, Mar 14, 2018.

  1. Simon M

    Simon M Senior Member (Voting Rights)

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    The CMRC's new biomedical focus and big ambitions

    In a dramatic move last week, the UK CFS/ME Research Collaborative (CMRC) committed itself to a new, biomedical direction. It has started taking concrete action to engage with patients and also announced ambitious plans to enable much more biomedical research in the UK. These changes are enshrined in a statement of purpose, objectives and values (PDF) that replaces the Collaborative’s former charter.

    At the same time, Professor Esther Crawley, the CMRC’s controversial deputy chair, is stepping down from that role and from the board, due to a change in her role at her university. From this April, she will be replaced by Chris Ponting, Professor of Medical Bioinformatics at the University of Edinburgh. He heads the multi-million-pound Biomedical Genomics research programme at the Medical Research Council (MRC) Institute of Genetics and Molecular Medicine.

    The CMRC has set out its new purpose as promoting the discovery of the biological mechanisms and causal pathways that underpin ME/CFS, in order to develop targeted new treatments...

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    Last edited: Mar 14, 2018
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  2. Sasha

    Sasha Senior Member (Voting Rights)

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    Happy to see that this doesn't involve all the stupid Facebook gubbins that one usually gets with a Facebook post but is instead some sort of elegant bloggy page with no half-screen trying to force you to sign up to FB to read things properly.

    And a very interesting blog post! I, for one, was overwhelmed by the avalanche of stuff that they released and it's good to have the key points extracted. I agree that things seem to be going very much in the right direction with the CMRC and I'm looking forward to seeing their next steps. They do, of course, have a lot to prove now, having screwed up so royally before, but maybe it's a new day...

    :thumbup:
     
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  3. Sasha

    Sasha Senior Member (Voting Rights)

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    Big, very interesting statement from Chris Ponting in there, including this:

    I didn't realise that about the Alzheimer's research (the understanding that it's microglia, not neurons, and that that knowledge comes from genetics studies). Exciting implications for ME, where we don't know what the heck the origin organ/cells/system is/are. We seem to have no idea what's upstream and what's downstream.
     
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  4. dangermouse

    dangermouse Senior Member (Voting Rights)

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    @Simon M I look forward to seeing what unfolds, the platform sounds a good idea and @Chris Ponting seems like he’s going to be much more transparent and interactive with patients....I really do hope good things are going to happen.

    I hope Chris will agree to do an interview with @Andy that would be great.
     
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  5. Trish

    Trish Moderator Staff Member

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    It does sound promising. Thank you for the blog, @Simon M.

    My continuing concern is that the CMRC has a track record of setting up structures - look at the years they wasted trying to set up MEGA which never happened.

    I'd hate to see the good scientists now on the CMRC board distracted from getting on with good science straight away by more endless meetings about structures. Why not just encourage them to get on and plan research projects and apply for funding?

    Even link in with and collaborate with the NIH projects and data coordination center, and/or focus on expanding and using the great resource already set up by the UK ME/CFS biobank, rather than re-inventing the wheel?
     
  6. BurnA

    BurnA Senior Member (Voting Rights)

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    This sounds a bit fluffy to me, not sure how this level of non- detail made it's way into minutes.

    Let me know when you get funding Stephen, in the meantime keep your half baked mysterious apparent opportunities to your yourself.

    I remain sceptical of Holgate.
     
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  7. Esther12

    Esther12 Senior Member (Voting Rights)

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    Thanks Simon... so you're the power behind the throne? That can only be a good thing!

    Still got worries about the CMRC though.
     
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  8. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    I'm less outright skeptical now necessarily but resentful. I really don't see how 10 years on from the setting up of the ME expert group (CMRC Predecessor and around the of MRC refusing to give money as per the Gibson enquiry recommendations) how patients are now supposed to go wehay, there's now going to be a focus on biomedical research, wayhay we have a deputy chair CHOSEN who this time isn't a hugely controversial, pace fan and behaviouralist. 6 years we've been told we couldn't have money beyond the £1.5m grant from the funders and none was asked for by this establishment lot and NOW they're (eventually?) going for some money/ action and expect applause? Dr shepherd hopes the community will now all support the CMRC, the same community that's been left howling in the wind whilst Holgate and Esther took a very scenic route of "laying foundations" and focusing on a fatigue biobank whilst dementia uk got serious set up, effort, high funding and progress in 4 years.

    This glowing write up of what I see as "working CFS by Holgate round 3"is a tone I couldn't use but I can see the positives and reason people are feeling more hope of late that something good might finally happen in uk in a mood of wakeong optimism generally at Last and well done Simon for getting Chris on board, it feels amazing to be reading someone on the CMRC use his language and great if we can see fruits from a new, serious biological focus. However it looks like they're now 2018 still takinG A very long path approach from this starting place language h uses a lot , he talks of a genetic study FIRST , is that MEGA continued, then biological research following from that, is this SO different from the approach of the past years. He sees setting up a platform as th first step of a lOng path, newbies and people not directly affected/seeing patients can often be without the urgency needed. Look at Ron Davis' urgency. It's also a very different approach to the nih which seems more coming at all angles quick and simultaneously and how long before anything remotely treatments based? Couldn't ring fenced funds by MRC stimulate diverse 3 million pounds of research to start with in a year?

    I have lived ten years of severe ME whilst we have had a low budget, low urgency, big tent but small progress response to date from the establishment and my concern is holgates embedded belief in broadest is best, the lack of interest in ME vs CFS (severe ME especially) and the refined criteria and the main interest so far in fatigue, plus the possible further delays as they have a new wish list, each time they reinvent themselves there's new things to be done. Once we actually start to see lots of high quality research going on in uk as a result of this admittedly more professional and earnest sounding refocus, if I'm still around then I will be glad but probably not as you'll guess a cheering supporter of the organisation, maybe Chris.
     
    Last edited: Mar 15, 2018
  9. Simon M

    Simon M Senior Member (Voting Rights)

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    That's a fair question.

    I certainly hope that members of the board will be planning new research projects; Chris Ponting was talking about the potential for genetics and the board minutes talked about a genomics study. Two new board members (Chinnery and Elson) are mitochondrial specialists and, given that they've decided to join, I would have thought there's a good chance they will be planning to research do research as well.

    However, you could have asked the same question about the Dementias Platform, except that there there was already a substantial research programme. But setting up platform not only attracted £50 million from the MRC, but also provided a springboard to attract yet. more funding (see John Gallacher’s talk at the CMRC conf, link in my blog). And the platform has only just been established.

    An ME/CFS platform has the potential to attract an order of magnitude more funding, at least, than anything we've seen in the UK before. That is a prize worth investing some time in.
     
    Last edited: Mar 15, 2018
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  10. Trish

    Trish Moderator Staff Member

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    I really hope you are right, @Simon M, and I am not criticising the idea, so long as it is worked on alongside getting on with research projects, not delaying doing anything.

    How about suggesting @Chris Ponting and one or two of the others meet with the Biobank people, and see whether they can get something set up there.

    Genetic/genomic studies tend to require very large patient populations. That's part of where MEGA came unstuck, I think - the idea of collecting samples from 12000 patients, which, if done from scratch and just in the UK could take decades and cost tens of millions.

    Why not do a world wide coordinated effort on this? After all, genome data can be transmitted and collated electronically, so it's an ideal case for an international collaboration.
     
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  11. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    I'm confused about this dementia type platform idea. If MRC have resolutely refused to inject sums of money into CFS both in 2007 and as a continuation of the one off 2012 grant, why do people think they're now going to inject sums as part of a CFS platform now? Because The platform idea is so different, there are better research leads now, because other countries are doing more now?
    With dementia didn't the government say more had to be done under Cameron, weren't they given specific funding as a consequence
     
    Last edited: Mar 15, 2018
  12. Russell Fleming

    Russell Fleming Established Member (Voting Rights)

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  13. Trish

    Trish Moderator Staff Member

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    I think we are in cloud cuckoo land imagining ME/CFS will get the sort of funding dementia research is getting, whatever fancy platforms are set up.

    Dementia research has huge public and political backing because of the cost of caring for dementia patients, and because everyone knows someone with dementia.

    ME/CFS, however much we know it has just as great need for research, is simply not going to cut through with the public and politicians in the same way.

    I hope I'm wrong.
     
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  14. Cinders66

    Cinders66 Senior Member (Voting Rights)

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  15. Simon M

    Simon M Senior Member (Voting Rights)

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    as far as I’m aware, the government did not allocate specific funds to dementia.

    But you’re right that this will require a sea change in attitude from funders. The key point about the dementia platform is that it moved on from the current “competitive funding“ approach, with the MRC let’s researchers apply for when ever they want to research With no plans for any disease, saying “no, this disease is different, and it needs special attention and we need to ramp up activity by doing things differently”.

    The challenge now is to persuade the MRC and others to do the same for ME/CFS. The CMRC have already presented to the MRC about this, and got a positive response, as I mentioned in my blog. That’s why I also mentioned the hints about other good things happening in the background, such as contact from senior decision-makers/Politicians. Of course, the acid test is actually delivering on this, but the helpful example of what the Dementia’s platform has achieved, The initial positive reaction from the MRC, and the indication that good things are happening in the background or suggest that something good can happen from this.


    That’s a very interesting point about an international collaboration. Chris said in his statement that he is keen to consult with patients and with other researchers about how to do the study, and I hope that other researchers will include the biobank team.
     
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  16. Russell Fleming

    Russell Fleming Established Member (Voting Rights)

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    Talking of MEGA I was surprised there hadn't been a statement from the CMRC about it. The website is still up - but last updated early last year - while as we all know it was unable to attract the funding it applied for from specific grants available at the time from both Welcome and the MRC.

    I was a member of the Patient Advisory Group but resigned towards the end of last year. Members of PAG are now involved with the CMRC more directly, and will have a seat on the executive (or more than one), which I personally welcome. But I also feel the PAG - as its primary purpose has now changed, and founding members have resigned - should in fairness be opened up to new applicants.

    Just my personal opinion and not that of the ME Association necessarily.
     
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  17. Amw66

    Amw66 Senior Member (Voting Rights)

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    Yes; taking a longer route also enables certain personalities to exit into different roles, or cynically make any investigative work into mistreatment a bit like the current contaminated blood issue - ensure the significant people are out of the picture and significant numbers of patients are dead . It's a very British way of doing things...
     
  18. Trish

    Trish Moderator Staff Member

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    I think that is a good point. The PAG were chosen for a purpose which now no longer exists. And I gather some of the most critical of MEGA have stood down, including yourself and Spoonseeker, I think. Those who stood down from MEGA PAG may be the very ones who would best serve us on the new version of the CMRC, or there may be others equally suitable.
     
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  19. Valentijn

    Valentijn Not a moderator

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    Agreed. Most remaining members of the MEGA PAG expressed a lot of enthusiasm about MEGA. Which would suggest that some of them are perhaps not the most well-acquainted with the politics or scientific concerns around ME/CFS research. I'd rather we have patient representatives who really know what's going on.
     
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  20. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    The cynic would say that why they were transferred.
     

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