Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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If you had $100 million to donate to researchers, how would you divide it?

Discussion in 'General ME/CFS Discussion' started by Jesse2233, Jun 20, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    Some fun food for thought

    Here's mine:

    $5M - prize for a reproducible biomarker
    $5M - prize for reproducible effective treatment of 70%+ patients

    $15M - Ron Davis / OMF
    $10M - Fluge / Mella
    $10M - Lipkin / Monster Study
    $10M - John Chia / EVMed
    $5M - Chris Armstrong
    $5M - Warren Tate
    $5M - Jarred Younger
    $5M - Robert Naviaux
    $5M - Bateman Horne Center
    $5M - Peterson / Simmeron Research
    $5M - KDM / Whittmore-Peterson Center
    $5M - Nancy Klimas / Nova Center
    $5M - Dr MyHill / Mitochondrial research
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    I would also put Ron Davis/OMF and Fluge & Mella at the top of the list but I'd add Dr. Scheibenbogen/Cell Trend (and whoever else is doing the autoantibody research on their team in Germany with immunoadsorption & IVIG, etc).

    Not sure if Lipkin's team is organized enough right now to effectively use the money and I think they temporarily stopped donations?

    Who are Armstrong and Tate?... (hoping it's not obvious and will feel like an idiot :whistle:).
     
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  3. Jesse2233

    Jesse2233 Senior Member

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    Armstrong is a great researcher in Australia doing metabolomics

    Tate is another one in New Zealand looking at molecular biology

    Forgot about them! They would get $5M as well!
     
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  4. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    I would give it all to Ron Davis, who would then get together the team he saw fit.
     
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  5. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    I'd call all of the best minds to a meeting and fund intelligent collaboration. I would not give it all away at once, who knows what might pop up and merit funding? Plus the interest on the principal alone would be substantial.
     
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  6. Frustrated

    Frustrated

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    I would give it to EV med research
     
  7. keenly

    keenly Senior Member

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    Good question, one that I have thought about myself.

    I respect all those names you mentioned, but for me personally nobody understands CFS/ME better than Dr Cheney. I would discuss with him what direction to go with research and invest in that. I would also give Dr Yasko some money. The rest would have to share what is left.
     
  8. pattismith

    pattismith Senior Member

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    Do you think that Naviaux' work on CFS biomarkers is not enough to already build a diagnostic on it?
     
  9. eric_gladiator

    eric_gladiator Senior Member

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    Ron Davis without a doubt that is the one that is doing more
     
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  10. AndyPR

    AndyPR Senior Member

    Given that all this is hypothetical I think it's unfair to speculate that Lipkin wouldn't be able to use the (hypothetical) money effectively due to current events that will pass in time. And it is only the Microbe Discovery Project team (who are independent of Lipkin, the Centre for Infection and Immunity, and Columbia University) who have temporarily suspended their fundraising efforts until the impact, if any, of Hornig's lawsuit is known - direct donations can still be made to Columbia University.

    Back to the main question though, I agree with the general principle of spreading the money around, as I believe we need far more researchers involved. I'd be tempted to give Solve ME/CFS Initiative a pot of money to expand their Ramsay Fund seed grant program, which is trying to do exactly that.

    And I'd also give Invest in ME and other UK based biomedical researchers money, to help real science grow in the UK and to help counteract the BPSers.
     
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  11. Daffodil

    Daffodil Senior Member

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    I put WPI in my will years ago but I I'll have to die first... lol

    Dr. Davis is a good one too.

    Honestly, I would not give money to anyone else but those 2...those are the most promising in my opinion

    Lipkin would have been good but not now
     
  12. RL_sparky

    RL_sparky Senior Member

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    Quoting from the write up that OverTheHills posted on Ron Davis presentation at The 12th Invest in ME Conference, it looks like metabolites are a bit off from being used as a biomarker.

    "Looking at metabolites, he found patients were more than 2 standard deviations lower in 183 metabolites, even though all the standard doctors' tests came back normal. There is an issue of inconsistency with the Naviaux and Metabolon results though, and he needs to look at their methods to sort this out."
     
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  13. RL_sparky

    RL_sparky Senior Member

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    I don't know why all the Lipkin hate. He has the resources at his disposal if properly funded. I personally would like to see him have a big chunk of money to fund the Microbiome project. He has already collected the patient samples and if funded could probably have the study completed rapidly.

    Ron Davis has said if he had funding for five years which would allow him to attract top people. I would personally give him 25-30 million. If he can't make enough break throughs to then secure grants or garner funding through development of things like the nanoneedle then....

    Again my personal opinion is I wouldn't give to much money to some of our doctor's turned researchers, who have sincerely tried to help us but in whom I think are not as qualified to do this work.

    @AndyPR has suggested giving money to Solve so they can spread it around to qualified recipients through there Ramsey grants. I agree.
     
    Last edited: Jun 20, 2017
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  14. Carl

    Carl

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    I could solve it for a small fraction of that amount. I am not kidding.
     
  15. pcmenten

    pcmenten

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    Jesse, that's a very thought-provoking question. And I'm impressed that you seem to know about a lot of research that's ongoing.

    I'd want to divide the money between pure research and research into therapies. Some of the work being done for HIV is having a direct impact on infectious diseases generally, so that's a potential place to invest. And there's some work being done on vaccines for herpesvirus that is useful, such as the work being done at the Howard Hughes Medical Institute. The concepts they are developing will apply broadly to viruses.

    Then there are technologies such as the 16s mRNA that will help with diagnosis.

    Paul
     
  16. Demepivo

    Demepivo Dolores Abernathy

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    5 cents to Esther Crawley :p
     
  17. AndyPR

    AndyPR Senior Member

    There are two separate, but not exclusive, anti-Lipkin camps.

    The first is the group of people who are upset that he played a major role in doing some decent science and proving XMRV was only contamination of samples - some how it is his fault that XMRV proved to be a false lead. Some take this on further by believing that he is working to cover up the severity of ME in the population....

    The second is the newer group, who don't believe in the principle of "innocent until proven guilty" in regard to the court case being brought against him by Mady Hornig. If he is stupid enough to have done what is alleged by Hornig then he deserves whatever punishment is deemed appropriate by the courts but for a number of people it's sufficient that the allegation is made, not that it is yet to be proven.

    Whatever the outcome of the court case, unless, in the unlikely event, it somehow proves he was involved in scientific fraud, I still believe that he will be an important player in revealing some of the pieces of the ME jigsaw.
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    I don't hate him at all and wrote what I did in my post b/c I thought his team sent out an e-mail to temporarily stop donations so they could focus on the lawsuit. I assumed money given now would go toward the lawsuit (indirectly) vs. to his research. I know nothing about XMRV (this whole thing occurred before I was sick) and truthfully don't understand what it even is. I have just seen cases in academic medicine where donations really went to support a lawsuit and wouldn't want this to happen. Once it's cleared up, I'd put him back on Jesse's donation list.
     
  19. RL_sparky

    RL_sparky Senior Member

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    Good. I didn't think you did and did not quote your post in response. Just the overall tone of the board lately is biased towards him.

    That would be misappropriation of funds to use it for this purpose. The money donated went to Columbia, not to Dr. Lipkin's bank account in the Cayman Islands.;) I fully expect his legal issues to get solved in arbitration. I'm not taking sides either. I want both him and Hornig to work for us as you do also. As I stated above he has a study fully approved, with samples collected over a years time ready to go. I just want to see it get done ASAP.
     
  20. pattismith

    pattismith Senior Member

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    Well I am far from understanding your post and the "inconsistency with the result" you mentioned sparky, but thank you for the answer!:)
     
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