"Plunging Grant Application Rates Test NIH’s Commitment to Chronic Fatigue Syndrome (ME/CFS)"

Another way of looking at this:

In one year:
For illness A, there are 100 privately-funded research projects (by 50/100/whatever research teams)
For illness B, there are 0 privately-funded research projects (by 0 research teams)
For illness C, there is 1 privately-funded research projects (by 1 research team)
For illness D, there are 2 privately-funded research projects (by 1 or 2 research teams)

On average, there will be a lot more grant applications for illness A than B, C or D the following year.

 

No, I agree that there is a connection between public and private funding - pilot studies are overwhelmingly privately funded in fields that don't have an abundance of funding. (Pilot studies are funded using "creative grant accounting" by borrowing funding from other grants in fields where funding is abundant).

But we have to establish the fundamentals in this argument - that there is a historical lack of research capacity and efforts to build this capacity is struggling - it is up to the NIH to recognise that ME & CFS research is an exception and they need to adopt additional strategies to build capacity because their existing policy is failing. In the past I argued (CFSAC about 5-6 years ago) that they need to start funding specialist research centres to build capacity - they have funded a few such centres in one set of grants, but they need to fund a whole lot more.

 

Okay, though that would have its limits with any one team in terms of what they could fund. And there will always be existing research teams who don't have grants at any one time. And also then to get new research teams into the field, they won't start off with grants.

If we have to depend on special treatment for ME/CFS, we are in a weak position.

We should look for all we can get but a largely one-dimensional approach which focuses on lobbying and in many/most countries largely ignores raising money privately is not a good strategy.

 

Vicky Whittemore stated at the IiME conference this year that applications for ME funding actually have had a higher success rate of being funded than the average.

 

The first step is acknowledging it...

Because only the very highest quality applicants who think they have a very high chance of success even bother. If more people applied, the funding rate would go down. That is one of the points I'm trying to make.

 

From an agency in charge of equitable funding, the normal response to seeing any group struggling badly should be to try to figure out what is not working right and make a change.

That this is not occuring is concerning.

 

Are they? Seems like most medical research funding is whims and wants, there's not much sense to it besides what researchers find interesting. Way more politics than a careful response to actual needs.

If equitable funding were a priority we wouldn't be in this mess in the first place.

 

I think it's meant to be? Regardless of lobbying (which is mostly needed for rare and stigmatized diseases--the ones where the bureocratic structure isn't working out right), some data indicates that most NIH spending can be correlated to:
(individuals affected) + (degree of morbidity and mortality caused by the condition).

That's how advocates are working out what they think would be a fair amount of NIH spending for ME.

 

Exactly.

The NIH has a mandate to consider equity, but as far as I know, the MRC does not and the NHMRC has formally rejected equity.

 

There's an overall trend but the correlation is pretty weak.

It's certainly supposed to be. It just doesn't appear to. The variation is very wide.

 

An example of how funding a pilot study can lead on to a bigger government-type grant:
https://twitter.com/user/status/1156691016616960001


Thread on this:
https://www.s4me.info/threads/solve...ain-image-study-with-increased-funding.10605/

 

I agree with everything you say Tom about the importance of pilot studies.

To be clear, a successful pilot study does not mean more NIH funding for ME/CFS. It means a higher quality application can be submitted. NIH funding is specifically based on a percentage of applications received. NIH need many more applications submitted to fund more work. Hopefully more pilot studies lead to more applications.

 

that seems weird to me?

 

There was a review of medical research in Australia over 10 years ago which suggested funding based on societal disease burden - and it was overwhelmingly rejected. Basically scientists don't like being told what to do, but the argument was that they should be free to focus on "strengths" rather than worry about equity.

 

Big surprise (sarcasm) but I thought they also liked being thought of as good people, thus at least lip service to equity. Or at least some excuse like "doesn't affect many people"*.

*Not actually an excuse. People are people and there may be other applications for the research.

 

You are right about NIH funding a percentage of applications, but that is by Institute rather than by disease. So the number of ME studies funded by each participating Institute can increase if good applications are submitted. And for NIH, “good” usually means preliminary data like the kind obtained from pilot studies, plus maybe a publication or two. They pay far less attention to a proposal based on good ideas but no data.