NIH is estimating LOWER funds for ME research - a WTF?!? moment

[Stewart]

The worrying thing, as I see it, is that by posting these estimates for ME/CFS, NIH is not at all sending out the signal that the share for ME/CFS funding is predicted to increase, neither in absolute terms nor relative to other diseases.

I don't think we should read anything into that table at this point. Firstly because, as Londinium says, we can't conclude anything definite from those figures. And secondly because the the timing of the publication of these figures makes it very likely that they're intended as a lobbying tool for the NIH to use in their conversations with Congress about next year's budget.

"Before you vote to approve the President's budget Senator/Congressman/Congresswoman, you should probably look at these figures we've prepared to illustrate how a budget cut on this scale would impact the funding of research into condition xxxxxxxx that you've previously shown an interest in."

Francis Collins gave an interview to the Washington Examiner last week in which he made the same point - if the proposed budget cut goes ahead "virtually everything" the NIH does in terms of research would be affected.

If you're concerned by these figures, I suspect that the most useful thing you can do at this stage is to contact your representatives in Congress and ask them to oppose any attempt to reduce the NIH's budget - making it clear that research into ME/CFS needs a lot more funds, not less.

 

[ballard]

Why are we still at the bottom of the NIH's research funding? Why are we still in the company of hay fever ($7 million), gall bladder ($12 million), and peptic ulcer research dollars ($10 million?) It's way past time for the "big guy" at the NIH to allocate funds to give ME/CFS an appropriate slice of the research pie commensurate with the disease burden.

 

[*GG*]

I don't think we should read anything into that table at this point. Firstly because, as Londinium says, we can't conclude anything definite from those figures. And secondly because the the timing of the publication of these figures makes it very likely that they're intended as a lobbying tool for the NIH to use in their conversations with Congress about next year's budget.

"Before you vote to approve the President's budget Senator/Congressman/Congresswoman, you should probably look at these figures we've prepared to illustrate how a budget cut on this scale would impact the funding of research into condition xxxxxxxx that you've previously shown an interest in."

Francis Collins gave an interview to the Washington Examiner last week in which he made the same point - if the proposed budget cut goes ahead "virtually everything" the NIH does in terms of research would be affected.

If you're concerned by these figures, I suspect that the most useful thing you can do at this stage is to contact your representatives in Congress and ask them to oppose any attempt to reduce the NIH's budget - making it clear that research into ME/CFS needs a lot more funds, not less.

I don't think any budget should be not considered in cutting. The NIH can get more efficient and perhaps spend less funding on Male pattern baldness and shift the money to ME/CFIDS/CFS research!

GG

 

[me/cfs 27931]

While perhaps unreasonable to compare two NIH budget outliers, one might notice that $7 million is a scant 0.2% of the annual NIH HIV/AIDS research budget ($3.0 billion in 2016). A disease which has a lower US burden than ME/CFS.

 

[Londinium]

One final postscript (I know, I know, I'll stop talking accountancy soon, I promise). Per the Solve ME/CFS Initiative write-up of the CFSAC meeting:

• The NIH funding for this year (FY 2017) is currently at $8m, the NIH hopes to increase that to “record breaking” with the grant awards, currently scheduled for funding in September

I think that answers whether the $8m excludes the CRCs.

 

[Anne]

The NIH can get more efficient and perhaps spend less funding on Male pattern baldness and shift the money to ME/CFIDS/CFS research!

I've always wondered about this statement about Male pattern baldness getting more funds than ME/CFS. I know Klimas said it, but I've never seen any figures showing what is actually spent on Male pattern baldness. Did she really mean NIH or other federal agencies are funding it? With more money than ME/CFS? I can't find Male pattern baldness in the NIH spending report: https://report.nih.gov/categorical_spending.aspx

Does anyone know?

 

[RogerBlack]

I've always wondered about this statement about Male pattern baldness getting more funds than ME/CFS. I know Klimas said it, but I've never seen any figures showing what is actually spent on Male pattern baldness. Did she really mean NIH or other federal agencies are funding it? With more money than ME/CFS? I can't find Male pattern baldness in the NIH spending report: https://report.nih.gov/categorical_spending.aspx

Does anyone know?

http://grantome.com/search?q=alopecia Only some of these are directly related to hair loss, and I can't seem to find male pattern baldness in there specifically.

In 2014,15,16, a total of around 3 million was spent on Alopecia. (grants which had alopecia in the title)
Mostly on forms of it which were not male pattern baldness.


The below graph is funding for grants with Alopecia in the title.

And this one for CFS.

Note that the funding graph only counts NIH grants, and is inaccurate for continuing grants in the last couple of years.
It is probably fair to say there have been a reasonable number of years in which Alopecia (not male pattern baldness specifically) has been funded at a higher level than CFS.

I note however, that Alopecia Areata is an autoimmune disease, and understanding how it works may have much wider benefits on other autoimmune diseases. (of which ME/CFS may be one).

 

[viggster]

In my opinion, Solve made a mistake with their post. I wish whoever wrote it had checked with someone who understands the federal budgeting process before getting everyone riled up.

The NIH is an executive branch agency. That means the president is their boss. Every year, the president submits a proposed budget to Congress. Every executive branch agency must use this wish list when projecting future spending. This year, El Presidente submitted a budget proposal with an enormous 23% cut to NIH. If you look at the NIH projections for next year across all diseases, spending for every disease is cut 23%. Those projections are NIH saying, "This is what will happen if the president's budget goes into effect."

But Congress, not the president, doles out the dollars. Congress is not going to cut NIH 23%. Not in a thousand centuries. Francis Collins has done an excellent job building bipartisan support for medical research. There are a lot of medical research champions in Congress. The latest reports have Congress giving NIH an inflationary 3% bump next year. http://www.sciencemag.org/news/2017/07/house-bill-gives-nih-3-raise-blocks-cuts-overhead-payments

I am disappointed Solve put out this information without apparently understanding what they were looking at.

 

[Snow Leopard]

I am disappointed Solve put out this information without apparently understanding what they were looking at.

I'm disappointed that the NIH has lied to the public by putting meaningless spending estimates on their website.

 

[Londinium]

I'm disappointed that the NIH has lied to the public by putting meaningless spending estimates on their website.

I think that's unfair. Saying the NIH has lied implies it's made a conscious decision to mislead, which IMHO is not the case. Because the NIH doesn't budget by disease it cannot know how much it will spend on a given illness until the projects are approved. It is therefore forced to use a financial model to estimate how much will be spent by condition in future years and to do this, as far as we can tell, it simply takes future budget and allocates this based on existing spend. It's a simplistic approach but it's key to note that it provides reasonably accurate information for the vast majority of diseases.

It is only for a condition where the funding, as a share of overall spending, is ramping up or down significantly year-on-year that this approach doesn't give a sufficiently accurate view. It is because we expect ME/CFS to get an increased share of funding that the NIH data doesn't work for this condition.

The second compounding factor is that the data presented is about a month old but that is made clear from the NIH website. At the time that data was calculated, the White House had proposed a ~23% funding cut. We can say 'well, they should have known that Congress wouldn't cut by that amount' but that's with the benefit of not being a government organisation. No government agency could put out figures that say 'hey, we've been told that we're being given this budget but we don't believe the President will get it passed so we're providing entirely different figures'.

In short, my view is that if you are a charity that believes the NIH is about to slash funding you should probably go and confirm that your understanding of the figures is right before putting out a press release that claims that Dr Whittemore et al have been lying through their teeth and have been planning all along to screw over the ME/CFS community. Doing otherwise causes unnecessary worry that what limited progress has been made is about to be undone and also undermines those within NIH who, against the odds, have been fighting for more funding.

 

[Anne]

Thank you @Londinium @medfeb @Stewart @viggster and others for clarifying this and explaining the accounting and politics behind the numbers. When I read SMCI's post, I reacted strongly because my immediate thought was: "We need 200 million, they are estimating 6. It's just so disheartening."

Thank you for bringing in the nuances - even if we're a loooong way from 188 million.

And thank you @RogerBlack for providing the information on alopecia! Do you know which funding category in the NIH categorical spending list this would be included in?

 

[RogerBlack]

And thank you @RogerBlack for providing the information on alopecia! Do you know which funding category in the NIH categorical spending list this would be included in?

I don't - I wasn't looking at the funding categories - just grants with Alopecia in. I

 

[viggster]

I'm disappointed that the NIH has lied to the public by putting meaningless spending estimates on their website.

They were following the rules. Every executive branch agency has to project spending based on the president's budget. Congress requires that NIH makes these projections.

And the projections are not meaningless. They reflect what the president wants.

 

[RogerBlack]

And the projections are not meaningless. They reflect what the president wants.

And, absent significant pushback, might get.

Contacting your representatives (for those in the US), or meeting with them in any way that raises CFS/ME in their minds, even if it did not directly result in a boost to the NIH budget for CFS isn't neutral and may in principle result in positives if something comes across their desk again.

 

[Snow Leopard]

They were following the rules. Every executive branch agency has to project spending based on the president's budget. Congress requires that NIH makes these projections.

And the projections are not meaningless. They reflect what the president wants.

We know the cuts aren't going to be a uniform percentage across conditions, so we know these figures are just bullshit.

 

[taniaaust1]

have a think why CDC suddenly removed CBT/GET from their recommended treatment on their website. Think why this is happening now, at this time in history in the shadow of reduced or pathetic levels of research funding. It's a get out clause.

They can't have the embarrassment of journalists being directed to a URL of denial (CBT/GET) by furious patients on the same day pathogen studies proving inflammation and autoimmunity are published. So it had to go, and it had to go as things are slowly changing behind closed doors and out of NIH CDC control.

Once key skeptics 'retire' you will know they know the game is up, and they will concede ME/CFS cannot exist any longer, and will have to be split. What was happening before 1988.

agree that this may well by why they wiped out the CBT/GET. Things are slowly changing and they do not want to be left looking very bad (what's that saying....left with egg o their faces) when it all suddenly shifts.

I was one of those sceptical patients and dont really trust anything they do, they have proven for too long they cant be trusted. Im not one bit surprised that the expected funding hasnt happened.

Any change they make of making this a proper serious disease is done with their feet dragging and only cause they have been forced into having to do it.

 

[viggster]

We know the cuts aren't going to be a uniform percentage across conditions, so we know these figures are just bullshit.

What part of "NIH was following orders from Congress" don't you understand?

About 15-20 years ago, Congress directed NIH to make this categorical spending spreadsheet, including projections for the future year. It has caused much consternation inside NIH and out. I think it's good to see how funding breaks down, but so much basic science applies across many diseases that the spreadsheet should only be seen as a rough guide. And NIH does not start each year with a pile of money for each illness. That's not how it works. But, of course, it's used by disease groups of every stripe for their own purposes, which was inevitable. My view is that it should be seen as a rough rule-of-thumb on spending per disease.

Here are the caveats NIH posts with the spreadsheet: "The annual estimates reflect amounts that change as a result of science, actual research projects funded, and the NIH budget. The research categories are not mutually exclusive. Individual research projects can be included in multiple categories so amounts depicted within each column of this table do not add up to 100 percent of NIH-funded research."

 

[Snow Leopard]

What part of "NIH was following orders from Congress" don't you understand?

What part of "I don't think meaningless estimates are useful" don't you understand? I don't agree with this doublespeak as a result of "orders from Congress".

I'm afraid. We're going to have to agree to disagree.

 

[Emily Taylor]

Don't know if the tags worked, so will re-tag

@medfeb @jspotila @JenB @znahle @Emily Taylor @Janet Dafoe (Rose49) @elizabeth234

Hello Anne,

Thanks for tagging me and drawing my attention to this thread. Wow. There is a lot to unpack here.

The first thing I will say is that these numbers are estimates. I hope that was made clear in the article and my sincerest apologies if that was unclear. Despite my best research efforts, I was unable to confirm if this estimated figure included the recent funding opportunity announcements (FOAs) - which is why the article clearly stated:

"These estimates are not finalized until the fiscal year closes and these estimates are very likely to change based on the quantity and quality of research grant applications submitted."​

At this time, only the first year of funding for the FOAs is confirmed and subsequent funding is contingent on the appropriations process. So, the anticipated reduction in funding could reflect many different factors.

Again, these are estimates and the NIH could be releasing them for financial planning or political reasons. It is my personal belief that they are purposely estimating very low because of the high uncertainty in funding prospects for the FY 18 budget. But, we have to take notice when they estimate a reduction in our funding and we cannot sit quietly by when such estimates are announced (for political reasons or not). This is an estimated funding decrease and not confirmed.....yet, it does indicate a very scary prospect. I believe SMCI would be remiss in our obligations to the community if we didn't at the very least inform folks of such an announcement.

I would also note that these figures came out prior to the House Labor-H subcommittee appropriations bill, which ignored the administration's proposed cuts to the NIH and actually countered with an increase. So, it's likely we may be seeing updated estimates in the coming weeks to reflect the ever-shifting appropriations process. We will likely be writing a story on the House bill next week.

I hope this helps! It warms my heart to see our work discussed so ardently in the community we serve. If you have any questions, please don't hesitate to contact me. You can reach me at etaylor@solvecfs.org

All the best,

~Emily

 

[Mary]

@Londinium (or anyone) - what do "CRCs" and "DMCC" stand for?