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"Plunging Grant Application Rates Test NIH’s Commitment to Chronic Fatigue Syndrome (ME/CFS)"

Discussion in 'General ME/CFS news' started by Tom Kindlon, Mar 21, 2019.

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  1. duncan

    duncan Senior Member (Voting Rights)

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    I'm not sure the plunging grant application rates were needed to test the NIH's commitment to ME/CFS. I just think of the NIH's own ME/CFS study which combined elements of the psych brigade with the Lyme crew; that spoke volumes to some about the NIH's commitment to ME/CFS.

    You still want applications, though, I get that. Nevertheless, private funding may be the smarter way once you've read and digested the writing on the wall.
     
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  2. Alvin

    Alvin Senior Member (Voting Rights)

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    This private vs public funding is a red herring. No other condition requires it as a precondition to have research done. More money no matter the source means more research dollars behind getting things done but there is no requirement to have dollar to dollar one for the other or even a percentage.
    These two sources are mutually exclusive.

    We should fundraise so more research can get done. We should force the NIH to fund research so more research can get done. There is no need to tie one to the other or accept defeat because one is less then the other. If we accept defeat or believe the arguments designed to screw us over then we will get screwed over :(
     
    Last edited: Mar 22, 2019
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  3. duncan

    duncan Senior Member (Voting Rights)

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    The NIH and CDC's stranglehold on what does or does not happen vis-a-vis contested diseases like ME/CFS may be challenged by the outcome of the Lyme RICO trial going on right now in Houston. That case pits 27 Lyme patients against several Insurance Carriers and the authors of the IDSA Lyme Guidelines - and those Guidelines are supported and promulgated world-wide by the NIH and CDC. As I noted in my last post, the NIH Lyme team was part of the NIH ME/CFS study.
     
    Last edited: Mar 22, 2019
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  4. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @Alvin @duncan

    I think one of the ways things will move along for this community is via the courts.

    However, getting interest in that is difficult...money not being available...

    I don't think of private funding as a requirement in order that government pumps are primed.

    I just think we would be further ahead, plus we could show the .......naysayers more objective evidence.

    We have definitely funded 10s of millions already.

    If you look back at the old CFIDS of America newsletters and Osler's Web you will see private funding in North America being noted.

    Historically, the ME community has donated many millions, and continues to do so.
     
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  5. Londinium

    Londinium Senior Member (Voting Rights)

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    That's genuinely not true. My OH has worked for various cancer charities, lung charities, a heart charity, asthma etc. etc. All do basic research funding for initial studies that are too small and too speculative to get public funding. The charities' roles in most conditions is to fund studies to get enough initial results to put in a research application for a wider study. This is not an ME/CFS thing.

    Thing is, the NIH doesn't generate research applications. Shouting at it to do more is pointless if it is not receiving sufficient applications and if it is not rejecting an unusually high proportion of ME/CFS applications; unless you want it to accept lower quality applications than for other diseases. That suggests the issue is earlier in the life-cycle: either not enough funding for pilot studies or not enough researchers interested in it.
     
  6. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    Jennie Spotila has written at length about the issues facing ME researchers getting funding from the NIH, with data based on many Freedom of Information Applications. For those wanting to learn more about the situation these are the recent series of articles she has written which are very good.

    NIH Funding for ME Goes Down in 2018

    https://occupyme.net/2018/10/21/nih-funding-for-me-goes-down-in-2018/

    NIH’s Obstacle Course to Success for ME/CFS Researchers
    https://occupyme.net/2018/11/29/nihs-obstacle-course-to-success-for-mecfs-researchers/

    NIH Obstacles Thwart ME Research
    https://occupyme.net/2019/01/10/nih-obstacles-thwart-me-research/

    Who Reviews ME/CFS Applications for NIH?
    https://occupyme.net/2019/02/05/who-reviews-mecfs-applications-for-nih/
     
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  7. Alvin

    Alvin Senior Member (Voting Rights)

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    That is one possible route but how?
    Who do we sue and on what grounds?
    I don't say this to derail your idea (which is a common way to do things, devils advocating something into oblivion is extremely common) but i say it as if we are to go this route how do we do it?


    All roads lead to Rome.

    We can accept a bunch of ridiculous nonsense that limits ourselves or we can say we will forge a path to get where we want to go no matter what.
    We don't ignore the lessons of history or other diseases but we should not constrain ourselves by them or accept when organizations who continue to act in bad faith say we are now your friends.
    Also we already have a fair bit of private money, how much of OMF's funding is public beyond the one study? I seem to recall just the Pineapple fund donating more money then NIH.

    Two responses.
    Your saying that people who have applied and who we are involved with ME research today are all substandard actors, OMF, Nobel prize winners, Dr Klimas and a whole host of others are simply not up to ME research. Thats what your saying.
    That also leads to the implication that we need to start from scratch and write off every asset we currently have.

    Secondly if we choose to believe an organization who is obviously BSing us then why are we bothering at all?
    We might as well accept this disease will never be treated in our lifetime because we accept failure by playing by rules designed for failure.
    If many want to go that route (even if they deny it) then more power to you.
    Perhaps the other thread i started about euthanasia and at what point should be consider it should be our focus instead of research towards a treatment and cure. Why hedge our bets when we are going to lose anyways or go in circles that will have us chasing our tails for the rest of our lives?

    Lets look at the arguments here
    We need private research to get public money - there is no law that says this and its a divide and conquer argument
    We want younger researchers - If you have no future in a field why would you enter it?
    Ignore malfeasance up till now because we have turned a new leaf - gaslighting, gaslighting, gaslighting. How gullible are we?
    There are not enough applications - they have driven everyone away and how many times should they cry wolf?
    We only fund a percentage - Then tell us that percentage and fix that stupidity. There is no law saying you can only fund a percentage of applications
    There are not enough people in the field - you don't get more people by making it impossible to enter then claiming your not.
    Its a chicken an the egg problem - In the past they have told peoeple not to apply and more then a few anecdotes have mentioned how its a career ender to enter.
    Its a Mexican standoff - NIH knows the good players, they can approach them and ask them to submit applications again or review the denied ones and mention they are willing to approve variations of them now if updated. Maybe Stanford will once again become a legitimate medical institution or maybe all funding for other diseases will now be withdrawn if they are affiliated with Stanford...


    So the question is are we willing to let them play us? If the answer is yes then we must lie in the bed we make. Stockholm syndrome, falling for lies /gaslighting and jumping through hoop after hoop means we will fail.
    If they want to act in good faith its not hard to do. This is not happening at present, they are playing us and winning.
     
    Last edited: Mar 23, 2019
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  8. duncan

    duncan Senior Member (Voting Rights)

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    What did the Lyme patients do? It's different. But why cant we try to hold them responsible?!?
     
  9. Alvin

    Alvin Senior Member (Voting Rights)

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    I do not understand?
     
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  10. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Yes, probably tens of millions in total, over the last 30 years.
    But that's out of a population of 17-30 million people with the illness, maybe 100 million first-degree relatives and hundreds of millions of contacts.
    So maybe $1-5 million per year. I think a population that size can raise a lot more.

    I spent a lot of time raising awareness over the years, organising hundred of interviews, thinking that getting more people diagnosed would lead to more people donating and fundraising. However, the numbers who support by fundraising or donating are quite small and, if the message keeps going out that governments fund all the necessary research (or something similar), that might not change. Governments don't fund all the necessary research: people die all the time from all sorts of conditions. There are thousands of conditions and especially outside the US, most won't get any funding in a particular country in a particular year. It's not like universal healthcare where governments try to ensure everyone is helped: research budgets outside the US are relatively small when one considers the need.

    Even if the NIH had funded all 8 applications in each of the last 2 years, that would still not have been that many studies considering all the different angles that ME/CFS can be looked at.
     
  11. duncan

    duncan Senior Member (Voting Rights)

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    Oh, it's ok:)

    So, Lyme patients finally have tried to hold the asshole architechts of their lives accountable via the courts. They may actually win, but it's far too early to make that call. It IS different in that who do we charge? But, why cant we figure that out??
     
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  12. Alvin

    Alvin Senior Member (Voting Rights)

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    I'm still confused, lyme patients are suing someone?
     
  13. duncan

    duncan Senior Member (Voting Rights)

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    Yes. Sorry. This is a big deal. Should I do a link thingee? Lyme patents are suing like three insuance companies and the IDSA and 8 or so Lyme authors of the Lyme Guidelines that pretty much all Euro countries - especially the UK! - subscribe to.
     
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  14. Alvin

    Alvin Senior Member (Voting Rights)

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    Who is sending such a message?
    And if this were true then people would stop donating to Parkinsons, ALS, Cancer, Heart Disease, HIV, Alzheimers and so on. This has not happened despite the fact governments are already funding them far above our per capita funding.

    If the the NIH for example said we are willing to spend $50 million in FY2019 and we sincerely apologize to those we have harmed and insulted over the years and ask that you apply again and we will fund in good faith this time (and actually do so) then perhaps those who are jaded will see the value in trying yet again. Then again it might take more time for those who have been burned repeatedly to believe its not a waste of their very meager resources to throw away the fruits of their labour yet again.
    The first step in such a plan is to stop treating us like idiots who will accept eternal gaslighting.
     
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  15. Alvin

    Alvin Senior Member (Voting Rights)

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    Yeah, link it
     
  16. duncan

    duncan Senior Member (Voting Rights)

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    Well, no, the first step arguably is realizing the NIH thinks you're dopes. :)
     
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  17. Alvin

    Alvin Senior Member (Voting Rights)

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    Thats the first step for us, but it would be a good first step for them trying to reach researchers.
     
  18. duncan

    duncan Senior Member (Voting Rights)

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    Really? To the Houston lawsuit? Ok. Let me find it. You do know you can google it..lol
     
  19. duncan

    duncan Senior Member (Voting Rights)

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  20. Alvin

    Alvin Senior Member (Voting Rights)

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