Do we actually know if the NIH funding is being spent?

There have been many discussions on NIH funding, and in particular the new funds dedicated to the new collaborative centers, as well as the see-saw of funding increases and decreases. Especially since this is basically the only actual significant source of funding we know of that is supposed to be going to research. And since the psychosocial cult isn't as significant in the US, it's likely not hijacked like in Australia, the UK, Denmark or other countries.

Is there any accounting of this funding? Because quite a lot of the research that we see published is either privately funded or not directly funded by NIH research for ME. Maybe I'm mistaken but I don't think researchers like Systrom receive direct NIH funds for their work that includes ME. We know that some of Hanson's (or Klimas?) funding comes because of her work on Parkinson's, AIDS and GWI.

Is there a breakdown of this? Because if we take an average of $10M per year, since 2008 that's a solid $100M. Extending another 2 decades we get lower annual budgets but that still amounts to over $200M in total.

I know medical research is expensive but considering a lot of the research we see from the US is not actually funded by NIH, where is that money going? Most of the studies are small and it's difficult to add up to the total we are supposed to see. Ron Davis' grant was the first to be directly funded. So if no projects are directly funded, do we actually know where this money is actually doing?

We know the CDC previously hijacked research money as well, but it's also supposed to spend roughly $5M per year and I similarly struggle to explain where that money could be spent at all considering ~$50M in the past decade and quite frankly absolutely nothing to show for except an update on a website that is marked as advisory only.

I'm not sure if this is advocacy but I don't know where to place this elsewhere.

 

The NIH did provide a fairly large grant to the UK ME/CFS Biobank this year, see https://www.meassociation.org.uk/research/research-projects/uk-mecfs-biobank/

 

Does this help answer your questions?

NIH funding in 2017/18, https://report.nih.gov/categorical_...ARRA=N&DCat=Chronic Fatigue Syndrome (ME/CFS)

Taken from Jennie Spotila's blog here, http://occupyme.net/2018/07/23/nih-2017-funding-fact-check/

 

Awesome! Yes it does. Thanks. I can't do much analysis but it will be useful in the future.

Did anyone do the same for the CDC?

 

That seems like the kind of thing that should be highlighted. Maybe in the NICE committee. Or to Monaghan? How embarrassing that a research funding institute is doing so badly that a foreign institute is funding work in their country.

Though serious kudos need to be given to the NIH administrator who did that. It's small but it shows some willingness to find a solution.

 

Full research papers will generally mention any funding sources. I have seen lots mention specific NIH grant numbers. It’s not something I’m suspicious about.

 

The ME community has funded at least tens of millions in the past three decades. Exactly how much, I don't know. Old CFIDS Association of America newsletters often noted donations by pwME for research. It would be interesting to know how much our community has donated to research, but likely difficult to find out. If I were to guess, I would say there is a good chance pwME have provided way more research dollars than governments. This is actually probably a safe bet!

 

Sometimes people talk as if it is some sort of scandal that a lot of the money that has been raised for research has been raised privately. But there are lots of conditions where a lot is raised privately and with some conditions the amount raised privately is multiples of what is raised privately for ME/CFS.

Outside the US, government research budgets are relatively small when one considers there are hundreds of major conditions and thousands of minor conditions and that they usually also fund a lot of basic, non-illness specific research. I don’t think depending on government research alone is a good strategy if one wants a cure relatively soon (e.g. 5-20 years).

The more private research that there is, the more researchers there will be in a field to be making applications for government grants with pilot data.

 

Dolphin, I couldn't agree more about needing more private funding for ME. We can't depend on governments to fund it all. The real imbalance comes though when we compare private ME funds to government funds, and government ME research funds to say, government MS funds, or other similar diseases. Or, even government ME research funds compared to less debilitating conditions like allergies, and Tourette's.

 

I would be careful saying other conditions as less in need of funding.

Allergies includes anaphylaxis, for which there isn’t a particularly good treatment. (And even just constant rhinitis might make employment difficult, even if it won’t prevent, say, doing your own washing.)

Tourette’s can cause episodes where one loses control of one’s body and falls to the ground.

 

Really?? I remember it was kind of a big deal about the ice bucket challenge precisely because so much of the funding for research was raised privately. How can fundraising for medical research ever been a bad thing?! It's not at all a choice. We wouldn't be doing that if the funding was appropriate.

People are so freaking weird.

 

Thanks Willow. I wouldn't say other conditions need less funding. Not at all.

Maybe I should have used hayfever as an example, or the good old stand by male pattern baldness, which Dr. Nancy Klimas has said at one time received millions more than ME. If we look at funding for ME and also Fibromyalgia (FM) in Canada, ME and FM are usually, if not always at the bottom of the barrel for government research funding.

ME effects 580,000 in Canada, according to the 2016 Canadian Community Health Survey, under the auspices of Statistics Canada. There are about 18,000 in Canada with Tourette's. Per person with Tourette's we have seen about $35.00 each for a specific funding year, as compared to about 25 to 50 cents per person with ME. For about the past two decades ME on average, gets about 25 cents per pwME per year for government research funding in Canada. Some of that has gone to BPS research, and some to biomedical. There was one year where spending was 11 cents per pwME.

Equity in research spending is what we want. If we look at the numbers of people effected, and the disease burden, then look at the government research dollars provided per patient with each illness, we can see that ME (and FM), both very debilitating diseases are not receiving anywhere near equitable funding.

 

Of course. Just when comparing to a different poorly-funded condition like allergies (includes hay fever and anaphylaxis in the same funding category, to the best of my knowledge), and pointing out that we have more debility, even though everything said is true, people (government and people with allergies) might interpret this as saying we are more deserving, rather than merely that our funding is absurdly low.

 

Not entirely sure what this is
https://docs.house.gov/billsthisweek/20191216/BILLS-116HR1865SA-JES-DIVISION-A.pdf

 

It’s the appropriations bill. Advocates from Solve ME/CFS Initiative and ME Action work with supporters in Congress on the language in this bill every year. It’s important in that the agencies are supposed to take the language seriously, but it’s not as specific as designating that funds be allocated in a particular way.

 

Well, Collins said he wouldn't do any more until instructed to by Congress and now he looks about to so I wonder what the next excuse will be not to do anything but at least we're about to have that checked off.

Though the instructions to the CDC are entirely meaningless, they already are under such an advisory and still don't do a damn meaningful thing about it.

Given the political chaos going on in the US right now, this is about as good as it could get. Gonna have to wait for some actual leadership to somehow occur somewhere in the bowels of medicine, unlikely, or the right wealthy person having a family member fall sick.

Which will happen first: the technological singularity or ME research being adequately funded? Still 50:50 for now.

 

I think that Dr Collins was referring to an act of Congress accompanied by funding rather that just appropriations language. And I think that it’s important to remember that he’s not blocking individual grants. Researchers can apply for funding at any time. ME/CFS have at least the same chance as other researchers of being funded.

The problem is that our research community was left to flounder for decades because on NIH’s neglect. dr Collins feels that NIH is doing enough to rectify the problem. We disagree. Dr Collins thinks that we should wait and see what comes from the Cooperative Research Centers before taking more significant actions. Again, we disagree.