Researcher Interactions Patient Representative Reports from Dr Karl Morten's collaborative group, Oxford, UK

OK, my assumption was wrong. Remember kids, it's wrong to assume, because it makes an ass of both u and me!!

https://mrc.ukri.org/funding/guidance-for-applicants/1-who-can-apply-and-how-to-apply/

 

Easy enough mistake to make. That would make more sense, though, to stop people gaming the system like that.

 

The MRC do not work like the American NIH. The NIH earmark a certain amount of money for each category of "illness", and that is the amount on offer that year. (Although, in reality, chunks of the money set aside for ME/CFS have been "lost", or spent on non-ME stuff).

The MRC does not have an overall quota (or in my terms, it has no overall strategy). It simply allocates funds to any study that is "good enough". In theory that could mean that in 2020 all of its budget could go to a brilliant collection of studies on ingrowing toenails.

Back in 2011, 123 MPs signed an Early Day Motion complaining about the MRC's lack of funding for biomedical research into ME, and as a result of that, the MRC finally earmarked £1.6 million for that. It wasn't much, but, we thought, it was at least a start. But it wasn't a "start" because, apart from funding a small follow-up to one of the studies, no more biomedical research studies were funded until very recently.

The argument about the lack of quality of applications into research into ME, like all excuses, will have some truth behind it. If you were a brilliant potential researcher at university and were thinking of researching ME, I'm sure your tutors would point out the fact that no money is put into that research, and would direct you to another area, or advise you to take a psychological approach. But the Gibson report named three experienced biomedical researchers who had had applications turned down, including one who was a member of the MRC.

The argument about the "poor" quality of applications would be more convincing if the quality of the majority of accepted applications was high, but that doesn't appear to be the case. I'm not arguing that poor quality ME studies should be funded. I am arguing that, given the varied quality of accepted applications (think the PACE trial), the judgement process is flawed and allows prejudice against biomedical research into ME to have an effect.

At school, before being allowed to grade coursework or mark papers, teachers have to undergo specific training so that they are clear about what is wanted, and so that they will mark work consistently, with grades matching those of experienced examiners. If my department had marked coursework 9, 8, and 3, I would have been very worried. At A-level statistics, if the two of us (independently) marking their coursework did not agree completely with the grade (which seldom happened) the reason for the disagreement had to be pinned down, or an external assessor would have been needed. The process in the medical world is unprofessional and sloppy, both in assessing the worth of applications for grants and in the peer review process deciding upon whether a study should be published.

I think it reflects the arrogance of the medical system that their members are highly educated so have no need of such training. We are stuck in the days of the Victorian gentleman scientist.

It is only very recently that Wellcome have funded any research into ME, and hasn't their more recent foray into the ME world included funding Esther Crawley's work?

In the reply to my complaint of a few years ago, the MRC said that the overall success rate was a quarter: from what I could make out from the information I had, the success rate for applications to study ME was around half of that (that's from memory – if you want to quote it, let me know and I'll see if I can sort it out again).

Moderator note: This post has been copied, and posts discussing it moved to this thread:
Evaluation of research applications for funding

 

Is there any point in trying to involve Carol Monaghan in this, or at least in more details of the argument that ME has not been allocated biomedical research funding using this study as an example.

I know she is currently working on benefits but I think the meeting with the Minister is soon maybe next week.

In all her speeches in Westminster Hall and the Commons, she has placed a great deal of emphasis on the need for biomedical research so is this the time to take it further?

 

I would doubt that she could reverse this decision but it could be useful information for her to have. She is working with the ME Association on benefits, so it might be that Charles Shepherd has already informed her about this but, just in case, I think it's @Gecko who is in contact with Carol/her team?

 

I think the problem both with this clash of applications and the previous Wellcome episode is that they may both have involved major investment in infrastructure for bringing in clinical material. That should be something agreed by the research community as a whole if it is going to be very expensive. The Wellcome episode was worse because two lots of people were saying they wanted to set up the only ME Biobank (or in one case continue). The clash this time may have been less serious but I think psychological problems for the committee are inevitably generated in this situation. Maybe they shouldn't be but one has to work with reality.

 

@Andy, is there any way Karl Morten might make the application available? And indeed the comments? I am all for debate on how to move forward with research being open and collaborative.

 

Please check your email, you should have one from me.

 

It would be surprising if there was not at leat one person on both though - who would fill everyone else in on the situation.

 

Not so much me personally but as a team at #MEAction UK we are. I'll flag this up, and see if we can get a brief overview of what you've reported @Andy to her.

 

This is indefensible given the much larger funding given to PACE, which scored much lower on all those metrics, and then some. PACE was so clearly an outcome-seeking exercise demanding 10x more funding than needed.

By itself it could have been defended, to a point. But having funded garbage-quality research like PACE makes this laughable.

 

Is it really likely that Karl mortens proposal was of less quality than the Carmine pariante one they funded with oxford criteria as a base? But even the CP one had worth because it shed some light in an area of darkness. KM as someone outside the field at a prestigious university, it Was surely worth supporting him becoming more involved?

 

Perhaps the reality is if the GWAS is going to be quite costly, the MRC feels that .”will do”as the tick box GB contribution to the global research effort.

 

Is it a good moment to raise funds for the Morten team? We want them to keep working on ME and with more funding they could collect more data that will help with a successful application.

 

Possibilities are being explored at the moment in this regard. That's not saying that it will happen, just that it's one option that Karl and his team are investigating.

 

Karl has very kindly let me see his application and the referees' reports. I think his application is better than some of the referees' contributions, some of which are a bit dire.

On the other hand I can see why the proposal has not been funded and it has to do with the project structure. In simple terms I guess I would say that the time is not quite right yet to try for a proposal of this size. The MRC have to assess likely value for money and I think that would be much easier with a smaller proposal initially - maybe to someone like Wellcome who tend to deal with early phase projects. A proposal of the size of the current one tends to need a couple of years of planning because if any one arm of the project turns out to be weak the whole thing may sink and generate nothing of value.

 

Regarding value for money, isn’t it extremely bad economics /waste of tax payers money to leave an illness which highly debilitates young people vastly under researched?. Aside from individual issues that can be found with an application on being perfect enough. I’ve never worked and have cost the state a fortune in care. And housing etc. Plus the fact that this is an unpopular research field... so when we do get fairly decent proposals couldn’t they just be tweaked rather than rejected?

I think that the MRC has to consider that in a highly stigmatized field that simply isn’t raising much via the private route, if they’e only funding one significant round of funding per decade, the people with that illness are sunk.

 

I agree, I think the proposal is good enough to deserve advice on how the MRC would like to see it redrafted.

When Karl sent me the material he did not ask for confidentiality but I think it is a matter of simple courtesy to be reasonably discreet. What I might say is that the MRC might reflect on the fact that the proposal is more cogent than some of the reports from 'experts' in the field. And that is not because they are 'biopsychosocial' experts.

I don't like to be critical when it only seems destructive, but on the other hand pussyfooting around with ME research is going to help nobody in the long term. Sooner or later it needs to be transparent that some of the biomedical 'experts' in this field don't have much idea. The reports are anonymous, but they do not altogether surprise me. I have probably already said more than I should so don't ask.

 

I hope you have been able to offer ‘feedback’ and suggestions to Karl Morten so that perhaps a smaller proposal could be made to Wellcome?

Thank you, Jo, everyone needs as much support as possible in this field, whether researchers or patients!