Questionnaire to see what different people in the community Hope from the UK MRC

[Cinders66]

please can people comment on the reasons why if they wish

I’m trying to see what the views are and why on this matter

Basically the MRC are in talks with the CMRC over a funding proposal for extending the uk biobank and doing genetics research (this is taking a long time ) and have an application from Dr Karl Morten et al they’re being asked to fund to the tune of £1,5m, per year I think that was.

Otherwise the MRC have refused to issue a funding call following on from the one in 2011 , this is different to other countries such as Norway who as well as funding the rituximab trial also issued a significant funding call. From the Gibson inquiry 2006: to the U.K. HOC debate recently, Members of parliament have thought either significant funding should be being put in by the MRC or there should be “more money for biomedical research” which admittedly is quite vague.

 

[Trish]

I'm having trouble with the options, as none of them seems to fit what I'd like to see.

I'd like the MRC to fund the running costs of the UK ME/CFS biobank and give a large amount to significantly expand it, and fund good projects using the Biobank, including the Chris Ponting proposal for a genomic study.

I'd like Karl Morton to get funding to continue and expand his work.
I'd like other smaller projects from new researchers coming into the field to get funding if they are good proposals.

And probably some more, but it depends on the proposals being worth funding.

I'd like a big well funded study a bit like the NIH in house in depth study to be set up by a team who know what they are doing and for MRC to fund it.

So yes, in theory I'd like the MRC to allocate more than £2 million year to ME funding, but that depends on good enough proposals from researchers.

Edit: I ended up picking the >1mill. /yr option as the nearest.

 

[wigglethemouse]

Isn't ME a highlighted item for them according to a Government ministers office response?

I'd like to know why they are not sending a representative to ME conferences like the CDC and NIH do! Why there is little transparency.

 

[Jonathan Edwards]

An interesting range of options but none of them quite fit my thoughts. Which are:

I have no idea whether or not the MRC know what they are doing.

The fact that the CEO thinks PACE is fine is not reassuring.

There probably have not been many good enough applications but there have been some. The ME Biobank should have been funded long ago by MRC.

I am not sure ringfencing helps but it might. It all depends on who is doing the assessing.

Edit: I am deliberately not commenting on current applications but otherwise Trish seems to have beaten me to it.

 

[Cinders66]

Isn't ME a highlighted item for them according to a Government ministers office response?

I'd like to know why they are not sending a representative to ME conferences like the CDC and NIH do! Why there is little transparency. I

Yes it is but the first highlight notice was put up as early as 2004, was it. That might be wrong but ones certainly been there since 2012. The MEA position is that we have to wait for researchers to be interested enough or drawn in by the highlight notice. I however think it’s already proven totally ineffective in a stigmatised field.

 

[Cinders66]

Isn't ME a highlighted item for them according to a Government ministers office response?

I'd like to know why they are not sending a representative to ME conferences like the CDC and NIH do! Why there is little transparency. I

Their representatives would attend CMRC conference and meetings but not invest in ME one.

 

[Cinders66]

I'm having trouble with the options, as none of them seems to fit what I'd like to see.

I'd like the MRC to fund the running costs of the UK ME/CFS biobank and give a large amount to significantly expand it, and fund good projects using the Biobank, including the Chris Ponting proposal for a genomic study.

I'd like Karl Morton to get funding to continue and expand his work.
I'd like other smaller projects from new researchers coming into the field to get funding if they are good proposals.

And probably some more, but it depends on the proposals being worth funding.

I'd like a big well funded study a bit like the NIH in house in depth study to be set up by a team who know what they are doing and for MRC to fund it.

So yes, in theory I'd like the MRC to allocate more than £2 million year to ME funding, but that depends on good enough proposals from researchers.

Edit: I ended up picking the >1mill. /yr option as the nearest.

I'm having trouble with the options, as none of them seems to fit what I'd like to see.

I'd like the MRC to fund the running costs of the UK ME/CFS biobank and give a large amount to significantly expand it, and fund good projects using the Biobank, including the Chris Ponting proposal for a genomic study.

I'd like Karl Morton to get funding to continue and expand his work.
I'd like other smaller projects from new researchers coming into the field to get funding if they are good proposals.

And probably some more, but it depends on the proposals being worth funding.

I'd like a big well funded study a bit like the NIH in house in depth study to be set up by a team who know what they are doing and for MRC to fund it.

So yes, in theory I'd like the MRC to allocate more than £2 million year to ME funding, but that depends on good enough proposals from researchers.

Edit: I ended up picking the >1mill. /yr option as the nearest.

I think multiple options are allowed. I will add one for a significant “let’s crack it” NIH study which is additional to current but would not really fit under a ring-fenced option. It’s not really about money LEvels except for ring fencing.
I think the first of your two paragraphs are covered by “what they’re doing or planning to do” already ie biobank & GWAS , KM study and then if other good applications come in naturally, fund them.

I might do another questionaire for overall money per year from MRC & government people with ME want.

 

[Adrian]

I am not sure ringfencing helps but it might. It all depends on who is doing the assessing

I think making a pool of money available can be a good thing but that doesn't mean giving bad proposals money and I think when other research councils target money in particular areas they do things to get established researchers in relivant fields interested.

 

[Cinders66]

Thanks for your responses. It’s not the clearest poll because I added in trishes idea, one I hadn’t considered. I’ve ticked the bottom two but wouldn’t necessarily expect both ring fencing AND two big studies funded eventually and an NIH type study. I actually don’t think our MRC necessarily act like an NIH equivalent and can’t imagine them putting together that type of study, nor do I think that they particularly would want to in our field because they haven’t really indicated “will” to crack this or move beyond a PACE is valid narrative but in theory it’s something that would be weLcome.

On ring fencing I personally would like to see encouragement of CPET research over here as it needs more validation in our GET culture, that could be highlighted as an area in a funding call and would afaic be guaranteed good use of money rather than speculative, I don’t think the highlight notice approach is working.

 

[petrichor]

I think if the MRC ringfenced funding, or the government put money in, there would be plenty of good researchers that would take the opportunity to apply for funding. ME has a higher profile in the UK than in the US, and the NIH offering funding was able to bring good researchers forward to make applications. Given the higher profile, I think that would be more so the case in the UK. As it is, no one is probably applying because they just don't see it as a good, appealing or rewarding career path (and people don't see ME as a serious illness).

Ringfencing funding, or doing something similar, is the only way I see ME research significantly increasing in the short term in the UK. Otherwise, it's just vainly hoping that ME research will magically increase for some reason.

 

[rvallee]

I think that Ron Davis said it best: when you want a problem solved you create a center of expertise with the best people around and give them the right funding, secured for a long enough period of time that people can develop genuine expertise. The normal way of doing things won't work as it depends on the first step to come about spontaneously and for people at the top to give a damn.

The whole thing is aimless and has no leadership. Giving grants here and there that are only one-time funding is a complete waste. The NIH has spent well over $150M over the past several decades and still has nothing to show for it because it follows the usual broken method. The current NIH approach will also fail for that reason: aimless and leaderless.

Failure is a choice. There is a way forward and it is rejected out of pettiness and some weird attachment to a failed approach that has delivered nothing but failure. Divided efforts will fail, we already know that. A complete paradigm shift for how research is approached is needed here.

 

[Cinders66]

I think that theres a problem with the MRC highlight notice in that it doesn’t properly define ME. If the reality is CFS is viewed as a non disease behaviour illness and ME as serious systemic illness with characteristic features It’s key a highlight notice gets that across and I don’t think that the MRC does. It says:

“CFS/ME highlight notice

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a complex and serious debilitating medical condition with a diverse range of symptoms. Profound physical and/or mental fatigue is the most well-known manifestation, while others include pain, disturbed sleep patterns and gastrointestinal problems. Each patient experiences their own personal combination of symptoms but certain ones dominate.

Building our portfolio of CFS/ME research has been a high priority for the MRC for a number of years. This highlight notice builds on a call for proposals in 2011, through which the MRC committed £1.65m to high-quality CFS/ME research.

Some areas considered important and tractable for research by the MRC CFS/ME Expert Group (chaired by Professor Stephen Holgate), and highlighted in that call, were not well covered in the funded applications. These are highlighted below, alongside the other call topics, and now our Research Boards would particularly welcome applications in these areas.

Research proposals – application and assessment process
Through this highlight notice, applicants are invited to submit innovative research proposals that address the mechanisms underlying chronic changes related to CFS/ME in one or more of the areas shown below:

Applications should seek to improve mechanistic understanding in these areas through the study of cross-disease symptomatology, and pathways, in the clinic and/or laboratory.

Additionally, this highlight notice aims to build on the success of the recent call in increasing capacity in CFS/ME research and address the need for multidisciplinary teams to tackle the significant research challenges in this area.

Proposals submitted under this highlight notice should, therefore, involve partnerships between CFS/ME researchers and established, leading investigators working in relevant areas, but who are new to the CFS/ME field. It is expected that those investigators who are new to CFS/ME research will make a substantial contribution to the programme of work, to enable them to build their own track record in CFS/ME research.”

Which doesn’t mention PEM which imo is crucial to changing the narrative. I also think the term “medical condition” rather than illness keeps it possibly ambiguous. How do highlight notices work? do they reach people who aren’t already looking at the CFS page, could the MRC do more to promote this highlight notice and change the narrative of ME (eg adopt and promote the SEID definition controversial possibly) will it feature in a list of other highlighted areas, just dependant on drs no longer having a CFS prejudice attitude and potential interest? I personally think in a stigmatized Field simply saying “we welcome proposals in this area we consider a priority” insufficient.

Edit, If the MRC were sending out literature highlighting some of most important recent research, rebranding ME as a serious physical illness, stating the days of psychological interpretations should be over and so on I would be more supportive but I still personally think it would need this plus money offered as enticement to truly step up interest in our illness after so many years of drs being told engaging us in conquering a fear of activity is key.

 

[Cinders66]

Just linking to this thread here., relevant to this discussion.
https://www.s4me.info/threads/patie...ens-collaborative-group-oxford-uk.9402/page-3

I was naive enough to think that the MRC were making us starve of any intervention whilst they would eventually find this This type of independent “through proper channels” applications theye insisted on . I had assumed both the projects would eventually be funded, I mean we are getting nothing else are we, but no a charity supported, Oxford research application at the cutting edge of current ME thinking STILL isn’t of high enough quality to fund. So it’s another big fat zero in research pounds from the MRC whilst the severely affected are in despair.
I very much hope that #MEAction U.K. will get more specific and vocal on applying pressure regarding that vague request for “more money for biomedical research” because the other charities seem resigned to whenever the MRC will grant and this decade has been pathetic and we couldn’t afford another pathetic decade.

 

[Snow Leopard]

The goal is to build research capacity - if they claim there is not enough applications to provide as much funding as the disease burden demands, they have to ask themselves why and address those concerns directly.

 

[chrisb]

What do people want from the MRC?...… Resignations.

 

[NelliePledge]

Fund some actual biomedical research and stop wasting time on anything else.