UK CMRC 2018 Conference held September 19 & 20 at Bristol

Mithriel said:
I have fatiguability which is very different. I feel OK take 2 steps can't move any more, few seconds later can move again repeat. Sometimes I collapse with exhaustion but that is not fatigue.
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It sounds like a much more severe version of what my wife has. I think of it more as restricted energy supply, akin to a car with a partially blocked fuel line. In a sense my wife is quite fit, but seriously lacks the available energy to make proper use of that fitness.
Mithriel said:
Some people with ME get this sort of fatigue for the same reasons maybe but it is not the PEM of ME which happens without a reason.
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That's the thing with ME that is so different, and so confusing, for those not in the know. Every other other kind of fatigue/exhaustion/etc is invariably a secondary consequence of some other illness. With ME there is no other illness - the fatigue/exhaustion/etc is the illness. People cannot get their heads around this.

So very sorry to hear you've had this for 50 years now.
 
Thank you. Yes, absolutely, the opportunities to invest are not new. Evidence in person, in meetings and on paper has been presented and - yes - we await a decision on whether they will set up a new funding mechanism that would actively pump-prime biomedical research. This would need to go beyond the status quo (i.e. in addition to the highlight notice). My previous comment was supposed to be all about the shutting of this window of opportunity not about when (many years ago) it opened. Thanks.
 
anniekim said:
Sorry if a bit off topic but can I ask @phil_in_bristol who are the other CFSAC patient advisory members? Many thanks.
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Hi I assume you mean the patient advisory for CRMC? - I'm not at liberty to reveal names (although there was a link at one point on AfME's CMRC section; I can't seem to find it now....),

but we comprise at present: one carer (of a very sick child), one recoveree (me), and six sufferers (includign one with a child with ME) who range from the moderately affected to on-the-border of severe. We will be looking to recruit further members this autumn, if people wish to get involved & have a chance to influence the future.

In terms of our approach, we are all firmly in the need-for-more biomedical research camp, and are 100% anti-PACE, and anti-any more funding going to BPS research (if that helps!). the CMRC board are fully behind us with this approach. So if you support, in any way, the PACE Trial, GET, or CBT as primary interventions for this disease, you'll be unlikely to be a good fit.
 
phil_in_bristol said:
Hi I assume you mean the patient advisory for CRMC? - I'm not at liberty to reveal names (although there was a link at one point on AfME's CMRC section; I can't seem to find it now....),

but we comprise at present: one carer (of a very sick child), one recoveree (me), and six sufferers (includign one with a child with ME) who range from the moderately affected to on-the-border of severe. We will be looking to recruit further members this autumn, if people wish to get involved & have a chance to influence the future.

In terms of our approach, we are all firmly in the need-for-more biomedical research camp, and are 100% anti-PACE, and anti-any more funding going to BPS research (if that helps!). the CMRC board are fully behind us with this approach. So if you support, in any way, the PACE Trial, GET, or CBT as primary interventions for this disease, you'll be unlikely to be a good fit.
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Thanks, sorry yes meant CRMC. Why on earth do names have to be kept secret? Not very transparent.
 
anniekim said:
Thanks, sorry yes meant CRMC. Why on earth do names have to be kept secret? Not very transparent.
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I thought that at first but now I'm not so sure. Not everyone with ME wants their real name made public for all sorts of reasons including employers or family members not knowing they have ME. And they are volunteers, not doing it as part of their job. So long as they give their real names to the CMRC, that seems OK to me.
 
Chris Ponting said:
My apologies - I had to run for a plane so had to make the closing remarks brief. What I could (should?) have said is that there is a narrow window of opportunity because of the confluence of new and exciting biomedical findings (some of which were shown during the CMRC Conference), the changing funding environment in the USA/Canada and the influx of new investigators and new techniques. This window might shut soon: these new investigators might not establish their careers in this area, low levels of funding might keep studies under-powered (and thus not definitive) and UK research might not be able to partner synergistically with USA/Canadian ME/CFS science. The CMRC Exec is making every effort to alert funders to this closing window of opportunity and will continue to maintain (and increase) pressure. A disease of such severity, affecting 250000 individuals in the UK (and their families/friends), deserves and requires tax payers' investment.
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Surely if the MRC announced tomorrow that £20 million is available for research on ME ( work out the specifics later) it would alert researchers that there is a long term career opportunity. The money needs to be announced first. Why is Invest in ME plan always ignored? In the US they recently announced a large increase in dementia funding and are suddenly getting more research applications.
 
obeat said:
Surely if the MRC announced tomorrow that £20 million is available for research on ME ( work out the specifics later) it would alert researchers that there is a long term career opportunity. The money needs to be announced first. Why is Invest in ME plan always ignored? In the US they recently announced a large increase in dementia funding and are suddenly getting more research applications.
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While the idea of a lump sum announcement is undeniably appealing, what would be better, in my opinion, would be an announcement of £x million pounds per year for x number of years. This would be the way to convince researchers that they stand a chance of making a living for that amount of time.

Given that IiME have made it perfectly clear that they want nothing to do with the CMRC, it's no surprise that each organisation's favoured solution is different.
 
Trish said:
I thought that at first but now I'm not so sure. Not everyone with ME wants their real name made public for all sorts of reasons including employers or family members not knowing they have ME. And they are volunteers, not doing it as part of their job. So long as they give their real names to the CMRC, that seems OK to me.
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Yes I’d imagine some might be worried about DWP messing them about over Employment Support Allowance
 
obeat said:
Surely if the MRC announced tomorrow that £20 million is available for research on ME ( work out the specifics later) it would alert researchers that there is a long term career opportunity. The money needs to be announced first. Why is Invest in ME plan always ignored? In the US they recently announced a large increase in dementia funding and are suddenly getting more research applications.
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£20 million is always available from MRC for ME but it only makes sense for them to offer it to someone if they can show they have a good idea to work on. If £20million was offered to anyone who came along we would immediately have someone snapping it up who had no idea what they are doing - we seem to have had trouble like that before!

I am not convinced there is need for any announcement further than the notice about priority which is there. The sum available has to suit the project proposed. I don't have a lot of faith in the peer review system but at least someone has to decide that a researcher has some potential.

I think the reason why IiME's plan is ignored is that the people involved have not yet produced any results, despite several years of support. Unless there is something to judge likely research output by there is no justification for putting money in.
 
Trish said:
I thought that at first but now I'm not so sure. Not everyone with ME wants their real name made public for all sorts of reasons including employers or family members not knowing they have ME. And they are volunteers, not doing it as part of their job. So long as they give their real names to the CMRC, that seems OK to me.
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The patient reps to NICE 2007 were named, the patient reps to the 1998-2002 CMOs Working Group were named. If they have reason to use a pseudonym (an NHS doctor, a parent of a vulnerable child perhaps, or don’t want to identify as having ME), maybe, but no name, or pseudonym and no bio is not acceptable in my view.

A patient rep who i believe was on MEGA PAG had a bps bias in my view/or at least cosied up to BPS proponents. Some say all MEGA patient reps were transferred to CMRC reps, as no info given I don’t know for sure.
 
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Jonathan Edwards said:
£20 million is always available from MRC for ME but it only makes sense for them to offer it to someone if they can show they have a good idea to work on. If £20million was offered to anyone who came along we would immediately have someone snapping it up who had no idea what they are doing - we seem to have had trouble like that before!

I am not convinced there is need for any announcement further than the notice about priority which is there. The sum available has to suit the project proposed. I don't have a lot of faith in the peer review system but at least someone has to decide that a researcher has some potential.

I think the reason why IiME's plan is ignored is that the people involved have not yet produced any results, despite several years of support. Unless there is something to judge likely research output by there is no justification for putting money in.
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I think we all felt so frustrated when the government announced £40 million for brain tumor research. Did MRC already have projects in brain research waiting to be funded? I wasn't suggesting giving it to anyone, rather how do you raise awareness among scientists to get them interested?
 
Anyone seen any info about the videos????? Last year they were up the evening of each day. This year accessibility seems to have taken a backward step @Action for M.E. Accessibility needs to be a top priority for next year. Livestreaming. Ability to attend for part of the event. Other adaptations that need to be identified. Needs to be an ME friendly event and setting a standard that people can point to when trying to get NHS and Government organisations to include people with ME in their engagement activities.
 
Jonathan Edwards said:
£20 million is always available from MRC for ME but it only makes sense for them to offer it to someone if they can show they have a good idea to work on. If £20million was offered to anyone who came along we would immediately have someone snapping it up who had no idea what they are doing - we seem to have had trouble like that before!

I am not convinced there is need for any announcement further than the notice about priority which is there. The sum available has to suit the project proposed. I don't have a lot of faith in the peer review system but at least someone has to decide that a researcher has some potential.

I think the reason why IiME's plan is ignored is that the people involved have not yet produced any results, despite several years of support. Unless there is something to judge likely research output by there is no justification for putting money in.
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I find that an Astonishing position. The MRC highlight notice was originally issued early 2012, I can’t see any progress from that or any in the future. Norway and the USA have put in money and are seeing progress and doing good research.
I have been mystified by key U.K. players taking the we don’t need or deserve money stance for the past ten years, contributing to the state that are in where we havent had any. I agree with Andy, putting in money repeated years signals an important commitment to a field still not established in the medical sphere as being physical, serious or deserving.

I am frustrated that AFME havent sorted the videos a week on. I really want to hear Holgates talk.
 
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Another example of the MRC choosing to intervene in an area, putting up money to drive progress. It’s now stopped because in ten years the field has been established enough to flourish independently although it remains a “priority”. We however were told we couldn’t possibly have money to encourage research, havent flourished and were just dumped onto a priority list without support or effort to establish the field .

Obviously this is an area of medicine, not a stigmatized condition but if they could do it for hiv then they could have their CFS.

https://mrc.ukri.org/research/initiatives/regenerative-medicine/funding-routes/
Biomedical Catalyst: Regenerative Medicine Research Committee
The scope of the Biomedical Catalyst: Regenerative Medicine Research Committee (RMRC) is research that will establish the viability of an approach, through addressing focused research questions needed to unlock progress in pre-clinical development and/or early clinical testing of novel regenerative medicine therapies. The intention is to facilitate the transition from discovery research to mature translational development projects, supporting the application of such research to a stage where further funding can be found to continue development towards the latter stages of therapeutic or technological development. To deliver against this objective and to help scale proposals, successful applications are expected to be in the order of 1-2 years duration, with RMRC committing up to £2 million per year across ~10 awards.



https://mrc.ukri.org/funding/browse...erative-medicine-research-committee-nov-2018/

The November 2018 call is the final round of applications for the RMRC, after which it will no longer act as an independent funding scheme. The UK regenerative medicine research field has matured significantly since the MRC established a specialist funding panel in 2008 and our research boards and DPFS panel are now well placed to manage funding requests in this area. Regenerative medicine remains an MRC priority and we are committed to supporting research in this area from basic discovery science to translation through a variety of funding mechanisms.
 
obeat said:
I think we all felt so frustrated when the government announced £40 million for brain tumor research. Did MRC already have projects in brain research waiting to be funded? I wasn't suggesting giving it to anyone, rather how do you raise awareness among scientists to get them interested?
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They probably did have projects waiting. Research projects into brain tumours are easy to think of because you can grow the cells in the lab and study animal tumours and try out different drugs and so on. The problem with ME is that it is unclear what to do.

Raising awareness amongst scientists in such a way as to get productive people (about 5% of scientists and not the greedy politicos) focused on something worthwhile is a complicated business. It is not just a matter of waving money in their faces. You need to get older scientists with a track record in other areas to see a promising avenue and you need to encourage students and young scientists in to set up projects. That is going on but it is a slow process.
 
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