Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Poll and discussion: How much funding will the NIH provide for ME/CFS research

Discussion in 'General ME/CFS Discussion' started by snowathlete, Nov 1, 2015.

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How much funding WILL the NIH provide for ME/CFS research?

  1. $5-10 million

    17 vote(s)
    43.6%
  2. $20-30 million

    13 vote(s)
    33.3%
  3. $50 million

    2 vote(s)
    5.1%
  4. $100 million

    7 vote(s)
    17.9%
  5. $250 million

    0 vote(s)
    0.0%
  6. $500 million

    0 vote(s)
    0.0%
  7. $1 billion or more

    0 vote(s)
    0.0%
  1. snowathlete

    snowathlete

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    With the NIH starting to talk about a "jump" (I think that's the word Francis Collins used) in ME/CFS funding, this raises the question of how much funding we should get? And how might that differ from how much we will get?

    NOTE: For clarity, the poll above is for how much you think we will get, not how much you think we should get.

    Graham McPhee's excellent one and a half minute video on the topic of NIH funding of ME/CFS compared to other diseases over the last 25 years is worth another look:


    Some have suggested (not sure of sources, sorry) that in accounting for the prevalence of ME/CFS and it's severity, and comparing that to other similar diseases funded already by NIH, that ME/CFS research should be funded at around $250M a year. Further, if you consider the current lack of any treatment at all, the fact the NIH is so late to the party having failed its duty toward us for decades, and the huge economic loss (~$20 billion a year, is that right?) this presents (which may well be reversible to a large degree were treatments made available), there is, I think, a case for this being far too little. Perhaps $1 billion a year would be more reasonable and logical.

    Where's the money going to come from? As there appears to be around a 10% increase in funding (around $30 billion?) coming NIH's way, this actually makes it very easy for NIH to begin funding ME/CFS properly. £250M would not be impossible by any means as it is not as if they would have to cut existing funding elsewhere to make it happen.

    Nevertheless, I don't imagine things will change all at once; more likely we will see a ramped increase over several years. But what might we actually get in terms of funding in the near future?

    $50M might be enough to invigorate research into ME/CFS, get important findings happening and begin to attract new talent to ME/CFS research. I think anything less would be entirely inadequate and inappropriate. $50M is nothing really, in research terms. I'd feel more comfortable with double that initially as it would show true intent by NIH to begin fixing this situation.

    In summary, although I think $1 billion is what they should spend, I think they're more likely to get $50M. What do you think?

    NOTE: For clarity, the poll above is for how much you think we will get, not how much you think we should get.
     
    Last edited: Nov 1, 2015
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  2. Bob

    Bob

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    Yes, I agree. I'd like to vote $1bn, but it's unrealistic. Realistically, I think we're likely to get between $10m and $50m, hopefully nearer $50m. I'd like to see nothing less than $100m.
     
    snowathlete likes this.
  3. A.B.

    A.B. Senior Member

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    I would like to see 25 million next year, and 100 million within the next five years.
     
  4. Scarecrow

    Scarecrow Revolting Peasant

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    Difficult to answer a poll with two entirely separate questions. ;)

    Morally, for the reasons you have given, we are due that $250 million but I agree that it will more than likely start much smaller and be ramped up. It would be a mistake to throw in $250m immediately. Quality control is vital.

    I would like to the see the established and well respected programmes fully funded so that they want for nothing, while attracting new researchers to the field.
     
  5. snowathlete

    snowathlete

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    I wanted to ask both questions but that isn't possible it seems. I added a note for clarity, but the title of the poll itself is the question that should be answered, which is about what we will get, not what we should get. If anyone makes a mistake then they should be able to change their answer.
    I have changed the title of the thread also so as to make things less confusing.
     
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  6. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I think a realistic catchup figure could be close to the amount spent on Alzheimer's Disease, about which also little is known, and there are no clinical tests. This is $500-700m. However they do have more patients (even than the 4 million figure for CFS which comes from overbroad criteria). But we also are not doing well. And have been neglected in the past. Surely that should be taken into account.

    I am not sure that the amount spent for Lupus, MS, and RA, for example, are good comparisons because, although further work is needed, they at least do have a good start to testing and treatment.

    It's true that the funds expansion may not be able to be done all in one year--though with lots of support from NIH Institutes, it may expand faster than we think.

    It's important that the first-year figure be large enough that the studies are able to be large and of superior design types, finally. Studies have been small and cheap in the past because there wasn't enough money in the pot to fund several studies and have even one large RCT, for example. (Or other high-quality basic science study.)
     
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  7. Snow Leopard

    Snow Leopard Hibernating

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    Waiting for someone optimistic enough to choose the "$1 billion" option.

     
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  8. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Go for it. Positive psychology.
     
  9. Sean

    Sean Senior Member

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    We should get a billion in the first year, and 250 million a year after that.

    But more realistically, I will be disappointed with anything less than 100 million a year.
     
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  10. adreno

    adreno PR activist

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    I think it makes more sense to fund some pilot studies at first, to discover some fruitful directions, rather than just throwing huge amounts of money at random projects.
     
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  11. Snow Leopard

    Snow Leopard Hibernating

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    This goes without saying. The key is to build a centre of excellence to focus on this disease and develop a plan to build research capacity nationwide.
     
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  12. Sidereal

    Sidereal Senior Member

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    I wanna know who ticked 1 billion. You may need CBT to correct false funding beliefs!
     
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  13. SOC

    SOC Senior Member

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    While we're at it, can we have a poll on how much your governments are going to dedicate to ME/CFS research next year? We need all the funding we can get and we shouldn't put all our chickens in one basket. NIH funding could fall through at any time, or go south in terms of the nature of the research being done (BPS research :vomit:). If the world depends on the US taxpayers to fund a disproportionate amount of ME/CFS research, we are going to be disappointed. I want to see campaigns among patients in other countries to step up their government's spending on ME/CFS research, too. While the US may listen to citizens of other countries about how its money should be spent, other countries are not so likely to listen to US citizens asking them for increased funding. It's up to you to push your own governments.

    I'm glad to see the US NIH leading the way. It can set a bar for other nations -- so many dollars per capita for ME/CFS. Or perhaps Norway is already leading the way. :) How much is Norway spending per capita on ME/CFS research?

    How about while we're guessing at what funding the US NIH is going to spend on ME/CFS research, each responder also looks up how much their country is intending to spend next year on ME/CFS research and reports here? That would give us some other avenues for advocacy. "Look at this, my government. Portugal is spending 10 times (per capita) what you are spending on ME/CFS. We have xyz million ME/CFS patients in our country and you are spending a pittance compared to ..."
     
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  14. TiredSam

    TiredSam The wise nematode hibernates

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    Couldn't resist it. In my defence I can only say that WillowJ's post messed with my head. I'll take it off again.
     
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  15. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Sorry! :woot: It was a lighthearted post.

    Although it did occur to me that we shouldn't lower our expectations too much. Hope for the best, prepare for the worst so we don't get too let down, and tell them they need to provide what we need--that is their job, after all.
     
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  16. Sean

    Sean Senior Member

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    I see nearly half of us are pessimists. :p
     
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  17. skipskip30

    skipskip30 Senior Member

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    Im a cynic so went for the lowest possible option.
     
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  18. SOC

    SOC Senior Member

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    Realists? :p

    I hope some NIH official doesn't come here and think, "Oh, well if that's all they're expecting..."
    :eek:;)
     
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  19. snowathlete

    snowathlete

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    Indeed, I hope not!
    I hope people voice what they think we should get, what we expect and deserve, in the comments in case anyone from NIH does read. Don't want anyone to think the poll reflects what we are asking for. I personally will not be satisfied at all if the NIH simply give us what they believe they can get away with. I won't give up pushing until we get the funding level that is appropriate. It really is time for real change.

    What the poll seems to be suggesting so far is that around half the people in the community do not trust the NIH will follow through and take the problem seriously. No surprise given all the history. I hope people are not swayed by other people's votes too much though. I'd personally be very surprised if we got as little as $5-10M, but I understand people thinking that. I hope the NIH will surprise everyone and show it is serious.

    I agree about people pushing their own governments for proper funding too. The UK fails miserably and there is little sign of change, but I hope the potential change in the US will give those of us in the UK the material and courage to push the UK to do more as well. It is an international problem and needs to change everywhere. Totally right.
     
    Last edited: Nov 1, 2015
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  20. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I confess; I voted halfway between what i part-expected NIH to do and between what I thought they should do. In case they peeked. I didn't think of them checking to see what low confidence we had and trying to best it.

    Part of me thinks they will fund us like other undesirable diseases like fibromyalgia, $12 million, or migraine, $20 m. A good bit more than we have now but not enough to really do anything with. But then I think they can hardly do this new Trans-NIH thing with actual involvement from Institutes, plus extra-mural research, on such a pittance. So I believe it will be more.

    But then I can't decide if it will be a decent amount like Lupus ($100m), a substantial amount like colo-rectal cancer ($270m), a lets-get-in-and-solve-this amount like Alzheimer's ($600m) or obesity ($850)... or a making-an-effort-but-not-super-serious amount like uterine cancer ($57) or Crohns ($65m).

    Of course there's always the this-is-a-global-problem-that-was-previously-neglected amount, 3 billion, but I don't think they can come up with that kind of money.
     
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