NIH funds ME/CFS research: Thanks, but… Please, Sir, I want some more.

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Good news

Earlier this week the NIH announced funding of three collaborative research centers, along with a data management center. According to the NIH’s announcement the initial cost in 2017 will be $7 million. It’s actually around $30 million over five years to these centers.

Here is a very brief breakdown of the teams that won funding with links to information on their projects:

It’s great to see both new and existing researchers getting funding to study ME/CFS. I’m particularly interested in the work of Dr Unutmaz, an immunologist who got his first grant to study ME/CFS in the last year. He is active on Twitter and appears to take an interest in the wider issues in the community – as a lot of the other researchers above also do, I might add, I’m just encouraged to see new researchers getting properly involved also. Having new people join the field is essential.

Huge congratulations to all those who won these grants. Well done NIH for funding some promising-looking research.

There were a number of other research groups who missed out on funding in this round of applications. I hope they will all apply again in the future for more funding, and that other groups will see it is worth researching this disease, because the NIH needs to fund much more research into ME/CFS and is going to be under pressure to do so.

Not having published on ME

One of the most notable groups to miss out on funding was that of Professor Ron Davis at Stanford University.

It’s been reported that one of the reasons Ron Davis’ team were rejected was because he hadn’t published on ME/CFS before. Naturally you would expect the NIH to look at this when assessing applicants. But it sounds like one of the purposes of this NIH funding is to encourage new researchers into the field. By default then, why would we expect researchers to have published on ME already?

It isn’t just Ron Davis anyway, it’s his whole team in the application and it includes other researchers who have published work on ME/CFS. So it seems a flawed criticism.

A child with ME

It’s widely known that Dr Davis has a son with ME. It’s been reported that this was noted in the review of his application.

I don’t know the context. If I’m being generous, maybe it was noted and meant as a positive, but it sounds like Dr Davis’s impression is that it was meant as a negative. If that’s the case then I think the NIH might need to get a bit more up to date. If we look at the most backward place on Earth – no not North Korea, I’m talking about the UK – even the UK with its persistent focus on outdated and unscientific behavioral based models of ME/CFS does not consider an expert having a family member with the disease they are working on to be a conflict of interest.

Stanford a mediocre facility

It was also reported that Dr Davis’ facility was described as “mediocre”. Again, I’d like to know the context of this comment, but this is Stanford we’re talking about, one of the very top facilities in the world. I think if I was a reviewer of applications I’d be too embarrassed to write such a thing.

So did the NIH get this wrong?

Competition was strong; those who got funding got it because they deserved it. Their projects look great, maybe the best projects the NIH has ever funded into ME/CFS. Someone else not getting funding does not mean their research proposal was poor.

Given what we’ve heard about the review comments it suggest that maybe the problem is with whoever was assigned to review his team’s application; it may be that Dr Davis and his team just got really unlucky this time round. None of the others who got rejected have raised concerns about the reviews comments they received. Maybe the NIH needs to look at whoever reviewed Dr Davis’s application because it seems at least some of the review comments were unreasonable – silly even.

I haven’t seen the research proposal, the actual application, and I haven’t seen the actual review documents relating to that application. That makes it difficult for me to reach any kind of firm conclusion but supporters of Dr Davis’s research are always going to question decisions not to fund his work, particularly when it has happened several times before already. It is frustrating.

But I don’t believe that the NIH has it in for the ME/CFS community, or has a bias against one of the most reputable researchers in the field. When I first got sick this was definitely the case, the NIH was guilty of neglect, and even abuse toward the ME/CFS community. But there is evidence that attitudes have changed at NIH over the last few years. They are funding appropriate research at last and there seems to be a recognition that there is a huge unmet need in this disease. They must do much more, I’m not about to go easy on the NIH, but the tide seems to have turned.

Dr Davis and his team are smart and experienced; I’m sure they’ll take the right steps to increase their chances going forward. This may mean jumping through some hoops; publishing in a peer-reviewed journal for instance. If they tick the NIH’s boxes and couple that with a bit of luck in the application review process I think it’s only a matter of time before they win NIH funding.

The bigger issue, I think, is that there were more research teams that missed out on funding than those who got funding. I imagine all those who lost out feel they made great applications and deserved funding. I expect it is normal that two thirds of applicants miss out, but this is a field which is in serious need of support and nurturing to get it off the ground. There’s a valid argument, I think, that the NIH should  be awarding funding to more than 3 out of 10 applicants in these circumstances.

Summary

Some excellent researchers have got funding for high quality biomedical research and there are new faces brought into the field.

The NIH has begun to follow through on its promise to change its approach to ME/CFS research, to fund appropriate biological research. Credit to the NIH for that, and thank you to the individuals who helped make it happen.

There must be more though. It’s a good start, I recognized that, but ME/CFS research funding still makes shocking viewing if you look at the numbers against any other comparable disease. The NIH funded around a third of applicants this time around. Great, but we need more from the NIH. And from congress, who can compel the NIH to do more.

Every day more people get this disease. It is indiscriminate. It is devastating. Tomorrow it could be your loved one. Too many are children. Some have had it for decades on end. Many are severely sick, suffering a death like state, but without the release of death. Some do die.  There is no treatment at present. None. This is unusual for a disease of this magnitude.

So please accelerate your efforts. We really need to be getting research funding into the hundreds of millions of dollars bracket very quickly. Thanks for working hard for us to make this happen.

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