New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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How would you like the $1m donation to OMF to be spent?

Discussion in 'General ME/CFS Discussion' started by AdamS, Jan 22, 2018.

  1. AdamS

    AdamS Senior Member

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    I know it’s not really our place to say exactly how the generous donation of $1m in bitcoin to OMF from the Pineapple Fund should be spent, but I figured it might be helpful to make a thread to help generate a few ideas/perspectives on how to use the money...even if one good idea comes out of it, surely it will be a useful exercise.

    I trust OMF a lot and know that they understand our desperation for a cure/treatment but after all...as patients we have a unique insight into this illness so we may be able to generate some helpful stuff. It is also this very insight which allowed many of us to share our stories/struggles on Reddit in a powerful way that ultimately helped to secure the funding for OMF.

    I’d be interested to hear people’s thoughts...
     
  2. Diwi9

    Diwi9 Senior Member

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    I think they are pretty on point where they are, and my guess is the funding will allow them to accelerate their speed. So, continue analyzing genetic data from the severely ill, building more nanosensors for testing (especially potential treatments), and supporting investigators like Mark Davis. This grant sorta feels like Christmas all over again :)
     
    Last edited: Jan 22, 2018
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  3. geraldt52

    geraldt52 Senior Member

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    I doubt if it neatly fits in with what Dr. Davis is currently doing, but I'm continually bothered by the fact that no one seems interested in confirming or refuting Dr. Chia's finding of enterovirus in the tissue of patients with ME/CFS. It doesn't seem like it would be that difficult on a small scale, and then that idea could be put behind us. Dr. Chia seems anxious to be helpful.

    I never thought much of it until I read of Dr. Chia's observation that the combination of a severe (entero?) viral infection combined with treatment with cortisone seems to have precipitated ME/CFS in a number of his patients. If that is the mechanism, or a mechanism, it could certainly explain my own case.
     
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  4. Diwi9

    Diwi9 Senior Member

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    My understanding is that Dr. Davis is still working on techniques to better detect infectious agents, including enterovirus...fingers crossed, as I too am interested in this aspect.

    @AdamS - This reminds me that I remain very issued about cardiovascular issues in ME/CFS...I would love to see a deeper study of this, whether from OMF or another research outfit.
     
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  5. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Since they are having a hard time with getting NIH funding, I hope they can leverage the $1Mil to allow them to complete a study that gives them publishable results that NIH will look upon with approval, so that they can get more $Mil from the NIH.
     
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  6. Jesse2233

    Jesse2233 Senior Member

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    RNA viruses in severely ill including enteroviruses via ARUP

    Suramin pilot trial
     
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  7. Diwi9

    Diwi9 Senior Member

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    ETA: Correcting typos, again...anyone reading any of my posts...yeah, I have brain fog
     
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  8. AdamS

    AdamS Senior Member

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    Couldn’t agree more. Also dysautonomia in ME as this seems to cause significant issues for many of us.
     
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  9. Murph

    Murph :)

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    studies on people who've just done a lot of exercise, tracking the development of PEM.
     
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  10. mariovitali

    mariovitali Senior Member

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    I would definitely like seeing them going back to the basics and identifying the percentage of ME/CFS patients having Liver problems (NAFLD, Cholestasis, NASH, Liver Fibrosis) vs Controls.
     
  11. matt321

    matt321

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    Certified coaches to mentor people through their illness.
     
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  12. Wishful

    Wishful Senior Member

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    I certainly wouldn't support the mentor option. They might decide that there's no need for further research or attempts to develop a treatment. "We'll just mentor them into accepting a crappy life." :(
     
  13. junkcrap50

    junkcrap50 Senior Member

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    Anything that convinces other researchers from fields outside of CFS that this is an interesting disease and for them to start investigating it.

    Also, I think Naviaux's suramin trial could be groundbreaking.
     
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  14. Binkie4

    Binkie4 Senior Member

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    Cardiovascular issues in ME/CFS.
    No one doubts that heart disease has significant mortality and morbidity. Putting them together might benefit research and funding for both.
     
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  15. Sushi

    Sushi Moderation Resource Albuquerque

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    OMF is not a clinical practice but a research foundation to " to fund and initiate collaborative and groundbreaking research into chronic complex diseases"--so they do not work in patient care.
     
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  16. Binkie4

    Binkie4 Senior Member

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    The other issue apart from hearts and ME is ' sticky blood' and I think Dr Davis has recently expressed an interest. I think he has noticed that it doesn't pour as easily as non ME blood. Work on red blood cells was begun in the 80s and 90s by Dr Leslie Simpson but not followed up and Dr Simpson died a couple of years ago. Would be great if something came of Dr Davis' work on this.
     
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  17. AdamS

    AdamS Senior Member

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    One area that interests me is looking at the few existing treatments which have at least some documented efficacy and trying to find clues as to why they could be producing benefits to some.

    E.g
    Ampligen
    Staphlococcus Toxoid Vaccine

    IF it is true that both of these treatments help/have helped patients in the past, then perhaps it makes sense to cautiously delve deeper in an attempt to fill in some of the missing pieces of the puzzle and create/repurpose an even better treatment going forward. Obviously this is quite a simplistic view and as we know with Rituximab, sometimes these things lead to dead ends, but where fast-tracking is concerned, I wonder if there is value in this approach as it could lead to some quick wins/discoveries. Now we have some funding, it would be great to revisit areas that have shown promise in the past.

    I have no doubt that Mark Davis and the other experts are already 2 or 3 steps ahead on this stuff anyway.
     
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  18. femtosecond99

    femtosecond99 Senior Member

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    I think they could do more research into what results in recovery. That would provide the biggest benefit to patients IMO.
     
  19. edawg81

    edawg81 Senior Member

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    I want that *!*?#%!!!!! nano needle test in every dr office in the world after its validated as a proper mecfs diagnostic. The results of ppl testing positive for mecfs will be staggering, our health crisis will finally be quantifiable!
     
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