Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

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

Discussion in 'General ME/CFS News' started by Anne, Jul 21, 2017.

  1. Anne

    Anne Senior Member

    Messages:
    295
    Likes:
    723
    I just read this article from the Solve ME/CFS Initiative:
    http://solvecfs.org/update-on-the-nih-research-funding-totals/

    Update on the NIH Research Funding totals
    July 19, 2017

    Earlier this month the National Institutes of Health (NIH) released the updated financial data for categorical research spending. These figures include updated estimates for Fiscal Year (FY) 2017, ending September 30, 2017. The Solve ME/CFS Initiative is disappointed to report that the projected estimates for FY 17 are being reported at lower numbers than expected.

    Late last year at the International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFS/ME) in October of 2016 Vicky Whittemore of the NIH addressed the ME/CFS community. As Science Magazine reported, “Vicky Whittemore, the agency’s CFS point person in Bethesda, Maryland, delivered on a promise that NIH Director Francis Collins made last year by announcing that NIH spending for research on the poorly understood disease should rise to roughly $15 million in 2017, doubling the estimated $7.6 million handed out in 2016.” (http://www.sciencemag.org/news/2016...nic-fatigue-syndrome-patient-distrust-remains)

    [​IMG]

    [​IMG]

    This recent update earlier this month confirms that the optimistically anticipated $15 million will not materialize in FY 17. The update also confirmed the fears of many ME/CFS stakeholders that the NIH is planning to slow down its research investment in FY 18. The updated figures from the NIH Categorical Funding Estimate also anticipate a decrease of $2 million for ME/CFS research in the estimated FY 18 funding cycle.

    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. But, these first glimpses into the future of NIH investment in ME/CFS are not encouraging after the gradual progress in the past 4 years. It is important to note that the review process for the much anticipated NIH funding opportunity announcements for Collaborative Research Centers (CRCs) and Data Management and Coordinating Centers (DMCCs) is ongoing. While it is clear that initial first year funding for these projects is likely secure, there is less certainty associated with funding for subsequent years. There continues to be speculation regarding additional support for promising, yet unfunded, consortium applications that were not initially selected in the current application review process

    To view the entire NIH categorical spending estimate report visit: https://report.nih.gov/categorical_spending.aspx
     
    MEMum, Dolphin, meadowlark and 10 others like this.
  2. Anne

    Anne Senior Member

    Messages:
    295
    Likes:
    723
    I just can't believe NIH is doing this - actually estimating LOWER spending on ME research in 2018 - from 2016 a decrease of 25% - and no change from 2016 to 2017, in spite of promising us a doubling.

    2015: 6 million
    2016: 8 million
    2017 (estimated): 8 million
    2018 (estimated: 6 million

    How can this be? If I understand things correctly, the total spending consists of (perhaps among other things):
    - the RFA for Centers for research and a data center, which was supposed to be 6 million a year
    - the spending through the general mechanism - where they keep saying they encourage and expect more ME researchers to apply

    and is this one in there too?
    - the intramural study

    They are estimating 6 million dollars IN TOTAL in 2018. If they don't cut the RFA program with the centers, that is all that will be funded in that year. What happens to the intramural study? And are they not expecting to fund any ME researchers through the general mechanism?

    Conversely, if they do expect to keep funding through the general mechanism, that means they are quitting the centers.

    I can't find a number for total spending on the NIH page (which is here: https://report.nih.gov/categorical_spending.aspx) - do you know if the total NIH budget is estimated here to decrease for 2018?

    I thought in 2017 it was increased - so why do they not give us the promised doubling of ME research?

    Once again, I'm appaled and most of all INCREDULOUS. After all the advocacy work, after all the words, this is really happening?

    Please tell me the estimations are a mistake.

    Tagging @medfeb @jspotila @JenB @mango
     
    sb4, Luther Blissett, Aroa and 5 others like this.
  3. Anne

    Anne Senior Member

    Messages:
    295
    Likes:
    723
    Luther Blissett likes this.
  4. Anne

    Anne Senior Member

    Messages:
    295
    Likes:
    723
    According to Jennifer Spotila the intramural study is not included in that total.
     
    Luther Blissett, Sean and mango like this.
  5. Anne

    Anne Senior Member

    Messages:
    295
    Likes:
    723
    Luther Blissett likes this.
  6. Londinium

    Londinium Senior Member

    Messages:
    153
    Likes:
    1,302
    Looking down that list it would appear that virtually all diseases are showing a significant decrease in funding. Whether that is due to the proposed Trump funding cut for NIH or due to the way the data is presented isn't clear, as the data format isn't exactly intuitive! Per the NIH page:

    so I cannot work out whether the FY18 data is just for projects that have been provisionally approved to run into FY18 from this year, with more funding available for project applications in 2018 that isn't included in the data. (I have the same issue for FY17, as in I don't know whether the $6m includes the DMCC etc or will the cost of that only be included once the centres have been selected and improved? e.g. the study centres are not currently in NIH Reporter so does that mean they're not in the subtotal for this year?). The site really isn't helpful!
     
    sb4, MEMum, Anne and 1 other person like this.
  7. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,613
    Likes:
    12,428
    South Australia
  8. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Messages:
    695
    Likes:
    2,288
    The cause of ME (not CFS) is known at an experimental level and will be published in time, clearly ME is unrelated to Fukuda CFS just as MS would be also. The issue is, we had no test, and we had no biomarkers in people with fatigue based syndromes of any cause. Remove that issue in bold, and start looking at patients with a specific multi systemic disease rather 'fatigue' and then you crack the nut. You can study people and get repeat results over and over again. Then you know you're onto something when you discover the people with the infection, have the same biomarkers live all over the world also, and their close family members have this issue, but not the neighbours. Then you have proof of parent to child transmission and the 'seriousness' of ME kicks off.

    The NIH/CDC/ and so forth have and never fund this critical last step research on our behalf. They are well aware of the cause and have been for decades as are the lobbyists who pay certain other people we can't name but we all know who they are. The CDC and NIH worship at the temple of exclusion based CF, rather than inclusion based ME-ICC criteria for a reason of politics not patient safety. It's not hard to work out why.

    Once you test positive for the pathogen and the autoimmunity you can wave goodbye to CFS and ME/CFS forever as ME/CFS won't be allowed to exist with 'proven' ME sufferers inside, because the infections will cause a whole host of damaging effects on the body that ME/CFS hides, and CFS never was an infection anyway it was fatigue. So they want to and will keep CFS all for themselves. Sure they created SEID to try and hide ME in, but they screwed up. SEID did not include inflammation. Well ME is inflammatory and you can't have infection and autoimmunity without inflammation. Doh!

    So ME escapes from the grasp of SEID after all, but only due to independent researchers who refused to engage with SEID criteria (Fukuda facelifted, for what was meant to be another few decades at least - due to no funding.
    Hence it doesn't matter a damn what the NIH say or do now, we're past waiting for help, they never will help.

    Lets see where this year and next takes us, and 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.
     
  9. Alvin2

    Alvin2 If humans were rational...

    Messages:
    1,169
    Likes:
    3,278
    Has anyone told the author of the article, perhaps they can post a new article showing the patients were right to distrust
     
    Luther Blissett and Webdog like this.
  10. medfeb

    medfeb Senior Member

    Messages:
    469
    Likes:
    1,852
    It looks like the NIH funding by disease table (page updated on Jul 3) has reduced budget estimates for all diseases by an average of about 23% - I'm assuming because the president's budget called for a $7.5B cut to NIH - about 22%.

    On July 12, Science reported that rather than cutting, the House gave a 3% increase for NIH. http://www.sciencemag.org/news/2017/07/house-bill-gives-nih-3-raise-blocks-cuts-overhead-payments

    I think Congress still needs to reconcile with the Senate -- at least I don't remember seeing a Senate report on this - but the Senate has also been supportive of NIH.
     
    MEMum, Anne, Luther Blissett and 4 others like this.
  11. IreneF

    IreneF Senior Member

    Messages:
    1,551
    Likes:
    2,552
    San Francisco
    The current regime is vocally anti-science; sadly, cutbacks are going to keep happening
     
  12. medfeb

    medfeb Senior Member

    Messages:
    469
    Likes:
    1,852
    True. Which will make it important to push for a fair share of whatever funding NIH gets. Even if funding were $15M in 2018, it is still far below the funding level of $188 estimated to be commensurate with disease funding.

    And we need to push for that level to be achieved more quickly than NIH's current plan to ramp up the funding, which is just too slow.
     
    Mary, AndyPR, MEMum and 3 others like this.
  13. Londinium

    Londinium Senior Member

    Messages:
    153
    Likes:
    1,302
    OK, because I am a former government accountant and a massive nerd I've been playing around with the data on the NIH website and now I question whether the Solve ME/CFS Initiative have had confirmation from the NIH that funding is to be cut or whether it is based solely on an interpretation of the (frankly, unhelpful) tables on the NIH site. Certainly there's been no indication on the latest NIH / CFSAC calls that the proposed funding increase has been shifted into reverse.

    As far as I can tell, the $8m estimated for ME/CFS for FY17 excludes the amount earmarked for the CRCs and DMCC, which would add around another $4m to $7m on for FY17. I base this by searching for ME/CFS in NIH Reporter and totalling the FY17 allocations already made, which come to roughly $6.1m so far. I would also note that the RFAs and all discussions around the CRCs/DMCC have indicated it'll be funded from FY17 allocations. If that's the case then the total outturn for FY17 would be closer to $12m to $15m which - although small given the prevalence and impact of the illness - would still be a significant increase on previous years.

    As for the estimated FY18 spend, the data provided by NIH is about as much use as a chocolate teapot. Remember, the NIH site states "The NIH does not expressly budget by category" and so the data is just a finger-in-the-air estimate of what might be spent in FY18, most likely based on a pro-rata share of total budget rolled forward from FY16 or FY17. As @medfeb notes, it appears the FY18 data has simply had roughly a quarter top-sliced from every disease, based on the initial Trump administration budget for NIH. Which, as noted, has now been voted on and has left NIH pretty much flat - so I would expect the next update to the table to show flat spending next year.

    So unless the Solve ME/CFS Initiative has been given insider information as to future funding cuts specific to ME/CFS, I would be sceptical that the data on the NIH website is good enough to tell whether ME/CFS funding will go up, down or sideways next year.

    (Isn't accountancy exciting??!)
     
    AndyPR, IreneF, MEMum and 10 others like this.
  14. Gemini

    Gemini Senior Member

    Messages:
    622
    Likes:
    1,092
    Very true!

    The CDC website states ME/CFS is a public health Crisis, and 10 days ago NINDS Director, Dr. Walter Koroshetz, proclaimed on the Telebriefing:

    "We totally agree that the amount of funding for ME/CFS research is not even close to the burden of illness."
    [my bold]

    Those two statements are a "call to action" to NIH's budget staff to get to work on the problem.

    One place to start-- "unwarranted" projects in the NIH research portfolio, i.e., duplicative research also funded by other agencies like the National Science Foundation, Department of Defense, and Justice Department. Science magazine has reported on these over the years. Identifying and removing these opens up funding that can be shifted to other NIH projects.
     
    Last edited: Jul 22, 2017
    bspg, MEMum, medfeb and 2 others like this.
  15. Luther Blissett

    Luther Blissett Senior Member

    Messages:
    724
    Likes:
    4,102
    Yorkshire, England
    Thanks for your detailed post, seems to be the best interpretation of the situation.

    As for accountancy being boring, I feel a lot more accountancy, especially double book entry national accounting (and the assumptions involved), and a lot less economists, would make the world a much better place!

    If you are interested, but unaware, here is a good and thorough explanation of Modern Monetary Theory, based on accounting. http://neweconomicperspectives.org/modern-monetary-theory-primer.html

    In short, "Domestic Private Balance + Domestic Government Balance + Foreign Balance = 0" ;)
     
    medfeb likes this.
  16. RogerBlack

    RogerBlack Senior Member

    Messages:
    857
    Likes:
    2,786
    it is my understanding the funding for 2018 for CDC work on CFS that was there in 2016 has also vanished, so unless there is uncategorised funding coming out of other pots, it's likely the amount spent in 2017 will likely be considerably lower than in 2016. And that specific CFS spending for the CDC remained zero in the preliminary 2018 budget.

    Note that my understanding of the budget process is poor.
     
  17. msf

    msf Senior Member

    Messages:
    3,186
    Likes:
    4,438
    I just hope that the Senate fixes this.
     
    Anne and Luther Blissett like this.
  18. Sean

    Sean Senior Member

    Messages:
    3,250
    Likes:
    17,960
    Whether the NIH gets more, less, or the same funding is completely irrelevant to our claim. Its budget will still be massive, and well able to fund our needs.

    If that means other diseases lose a tiny bit off their budget, so be it.

    We are not asking for more funding than other diseases, only for our long overdue fair share.
     
    Last edited: Jul 23, 2017
    bspg, MEMum, medfeb and 7 others like this.
  19. Anne

    Anne Senior Member

    Messages:
    295
    Likes:
    723
    Thanks, @Londinium !

    I admit I don't know my way around these things - grateful for help - but why wouldn't the estimate take the RFAs into consideration? Wouldn't the estimate logically be the projection of money spent through the general funding mechanism plus RFAs and other mechanisms?

    If they did that, and we assume that the CRCs/DMCC will be funded this fiscal year, we would have as you say $12m to $15m as the estimate for FY17. In that case the 22-23% cut for all diseases would be based on that figure, and it wouldn't be looking quite so bad. (Though still woefully inadequate.)

    I agree, @Sean and @medfeb

    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. They keep saying that the reason there isn't more funding is that not enough ME researchers are putting in applications. We - and the researchers - keep saying that it's hard to get people to aim for a career in ME/CFS research when it's given such tiny amounts, and not much seems to be changing.

    If they were sincere in their wish to attract new researchers, they would take measures to assure them there will be more funding available - by putting out more (and bigger) RFAs, and in this case - I'm thinking - by showing the world that the aim of NIH is to increase ME/CFS funding, as promised in the article in Science.
     
    Mary, aimossy, JohnM and 5 others like this.
  20. Londinium

    Londinium Senior Member

    Messages:
    153
    Likes:
    1,302
    So I'm hypothesizing slightly as I haven't done US government accounting but I believe it's pretty similar to the approach used by the European Union, and that I have worked on: the EU uses an approach called commitment accounting that treats money as only going out the door once it has been committed to a project [I'm simpifying somewhat here - the unholy mix of cash, accrual and commitment accounting used by governments and international organisations is usually a bit of a mess]. An RFA wouldn't be treated as committed until fully approved, because the funding entity wants to ensure that it can change its mind - for example, if the proposals received are not up to scratch, or because it wants to delay a decision into the next financial year when more budget frees up. I would therefore expect that the CRCs would only be included in the FY17 figure when they are approved in August (?) or September (?). As I said, the information on the NIH website isn't conducive to understanding exactly what their estimation approach is, so take this all with a pinch or salt: I can't guarantee 100% that ME/CFS funding will be less than promised, but it is impossible to know whether this is the case from the data provided. If the Solve ME/CFS Initiative have based their claims of a funding cut just on the spending by category tool, I would hold our fire unless we get something more concrete.
     
    Hutan, JohnM, Anne and 3 others like this.

See more popular forum discussions.

Share This Page