NIH categorical spending for ME/CFS in FY17

[viggster]

A few weeks ago NIH posted its 'categorical spending' document that includes figures for fiscal year '17 (which starts Oct. 1). This document showed $7m in (extramural) spending for FY17 (note this figure does not include funds spent on campus, like the upcoming inpatient study). There was some consternation about this low figure, which did not seem to reflect talk about new funds being committed by Koroshetz et al. at the teleconference last week. So I asked Marian Emr, communications director for NINDS about it. Her answer was basically what I expected. If you translate from bureaucratise into English, you'll see she's saying that the figure is subject to change.

"The RCDC website has estimates for FY 2016 and FY 2017 by category as well as the actuals for prior years. The estimates are based on a combination of factors – general or specific budget guidance as well as any category-specific information provided by the ICs based on their scientific plans or other expertise. However, actuals can turn out different than the estimates for many reasons. The peer review process is a major reason, as we may get more or fewer high quality applications than the prior year. A better sign of NIH intentions might be a new Funding Opportunity Announcement, for example.

Basically, then, the figures posted for future year funding for ME/CFS were based on general budget guidance and not on any of the plans that NIH program staff are now developing to augment research in this area."

 

[BurnA]

Thanks @viggster for your efforts to clarify this.
Whilst I am optimistic that new funds will be made available I am disappointed they didn't consider this prior to releasing the document.

Actuals turning out different to estimates can of course happen and of course figures can change but what's the point in releasing a spending document if it doesn't reflect intentions. I wonder historically how much the actuals differ from estimates on average. I'd guess not by the amount ME/CFS would require to make a worthwhile difference. (100-300%)

To me this document reflects the intention at the time of publishing which is a big disappointment. I am sure this document must have had some high level of input so they should have been aware of any plans or programs for ME/CFS funding.

It would have been so easy to build patient confidence and trust by either having a 'tbc' or a significantly increased figure (20m or so).


They talk about attracting more and better quality applications, this document wouldn't inspire anyone to join ME/CFS research.

I do believe that efforts will be made to increase funding but this was an opportunity missed in sending out a clear message.

I am optimistic that a new funding opportunity announcment will be made.

Thanks again.

 

[viggster]

but what's the point in releasing a spending document if it doesn't reflect intentions.

This document was very controversial inside NIH when Collins mandated it several years ago (I'm pretty sure Congress gave him a big nudge to do it). It's far from a perfect document. Consider basic research. If someone receives a million dollar grant to study mitochondrial dysfunction, what disease category does that go in? It can fit into many. Same for many other basic science grants. That's just one problem. Another problem is that there's an office that puts together this document and the few people who work on it can't know every single thing that's in the works at NIH.

I am sure this document must have had some high level of input so they should have been aware of any plans or programs for ME/CFS funding.

You're assuming the right hand knows what the left pinky toe is doing. I don't think that is a safe assumption. And with Marian's response, you'll see that she's saying the document does not reflect everything going on at NIH.

 

[viggster]

They talk about attracting more and better quality applications, this document wouldn't inspire anyone to join ME/CFS research.

Researchers don't look at this document or use it to make decisions on what to research. This document was pushed on NIH by Congress to satisfy them & patient advocacy groups.

 

[BurnA]

Another problem is that there's an office that puts together this document and the few people who work on it can't know every single thing that's in the works at NIH.

Every little thing no, but if there is an office for putting together the intended budgets I would expect them to be aware of any new programs, initiatives or changes in tack, from previous years. That would be their job I'd expect.

 

[BurnA]

Researchers don't look at this document or use it to make decisions on what to research. This document was pushed on NIH by Congress to satisfy them & patient advocacy groups.

Ok I understand that but this document does send a message to researchers. Its one way to highlight that more funds would be available for any interested researchers.

I would say this document doesn't exactly satisfy ME/CFS patient advocacy groups.

 

[viggster]

Ok I understand that but this document does send a message to researchers. Its one way to highlight that more funds would be available for any interested researchers.

I would say this document doesn't exactly satisfy ME/CFS patient advocacy groups.

I see that. What I'm saying is that researchers don't use this document to decide what to study. Everyone in the biomedical world knows there's a big asterisk next to the future spending numbers.

 

[BurnA]

I see that. What I'm saying is that researchers don't use this document to decide what to study. Everyone in the biomedical world knows there's a big asterisk next to the future spending numbers.

Yep I know. But ME/CFS is different in that a concerted effort has to be made to attract researchers. The NIH are aware of this, so it could have been useful if they put a big fat juicy number beside ME/CFS.

Remember, researchers are used to being denied funding for ME so saying there is a big asterisk beside the no.s doesn't change most researchers experience. It's not like they are thinking well, they have only granted $5m pa for the last decade but hey this year it might be so much more....

 

[Comet]

The peer review process is a major reason, as we may get more or fewer high quality applications than the prior year.

It's so crazy that funding works this way. Let's hope we get some appealing (to the NIH) applications and get some of that research money!

A better sign of NIH intentions might be a new Funding Opportunity Announcement, for example.

 

[Justin30]

Well, I think as a patient community this unacceptable on behalf of the NIH...the burden of the illness is far to great and these number keep ME in the "Not so Serious" disease column

I think that all criteria for research studies being submited to the NIH should be using ICC or CCC criteria.

These are the only two relvant criterias to truly define true ME. There guidlines also point out disease to rule out, testing, and comorbidities.