Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Best bets for donations

Discussion in 'Fundraising' started by neweimear, Oct 23, 2017.

  1. neweimear

    neweimear Senior Member

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    Where is best to direct our funds when fundraising
    My list are OMF, Simmaron, Solve Iniative and Naviaux's lab.

    I get the feeling that OMF aren't as popular as they used to be, people are starting to spread their monies
     
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  2. Diwi9

    Diwi9 Senior Member

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    All good groups you've listed. My favorite is Solve ME/CFS because they strategically fund research (and try to bring "new" researchers into the fold), and they are pummeling at U.S. government agencies advocating for increased funding and awareness. They make every dollar work, unlike many of the big-name disease non-profits in the U.S.

    I'd add Millions Missing to your list too. PR is also a non-profit and accepts donations.
     
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  3. neweimear

    neweimear Senior Member

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    Yes, I think Solve do great work. Carol Head is a fantastic lady with such integrity.
     
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  4. Badpack

    Badpack

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    I have the feeling if you want a fast answer without waiting for a 3 year medical trail with 2 year follow up and all in secret, OMF seems pretty nice. Also having a family member with CFS/ME shows you every day again how important and urgent a therapy for many of us is needed. Also Maureen Hanson has a sick son. So i put a lot of trust in her doing all she can to find a solution. Dont underestimate the power of a mother who wants to help her son to get well again haha
     
    Mary, Cinders66, neweimear and 4 others like this.
  5. Jesse2233

    Jesse2233 Senior Member

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    OMF gets my vote
     
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  6. Nickster

    Nickster Senior Member

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    OMF gets my vote!
     
    nandixon, Mel9, Mary and 4 others like this.
  7. RL_sparky

    RL_sparky Senior Member

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    Columbia will get my next donation.

    They have 125 ME/CFS patients and 125 healthy matched controls samples.
    They already collected stool and saliva at four different times over the course of a year, allowing the researchers to see if the changes in microbiome and immune system are related to changes in symptoms over time. Blood is also collected at the first and last time points.


     
    Mary likes this.
  8. neweimear

    neweimear Senior Member

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    If you want to donate to Lipkin, is it through Simmaron. I can't find anything for Columbia....well I did but could not find where to donate to me/cfs.
     
    RL_sparky likes this.
  9. shannah

    shannah Senior Member

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    neweimear and RL_sparky like this.
  10. Silencio

    Silencio Senior Member

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  11. Ember

    Ember Senior Member

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    The Microbe Discovery Project provides good transparency concerning their cohort:
    Notice too Dr. Hanson's encouraging preliminary announcement:
    The 2-day CPET protocol inspired the ICC:
    Stricter recruitment of more homogeneous cohorts has been so long-overdue!
     
    RL_sparky and neweimear like this.
  12. Mel9

    Mel9 Senior Member

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    Me too
     
    nandixon likes this.
  13. Ember

    Ember Senior Member

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    In this video, Dr. Klimas discusses the connections between Gulf War Illness and ME/CFS, as well as the need for funding:


     
  14. neweimear

    neweimear Senior Member

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    How are we supposed to fund them all....imagine Nancy Klimas could have us nearly sorted if she had received adequate funding
     
  15. Ember

    Ember Senior Member

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    Support advocacy:
     
  16. neweimear

    neweimear Senior Member

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    250 million per year!!! I think that is a tad unrealistic. We got 13.3 million from NIH in fy17. If we pushed up to 20 million fy18, that might be more likely, everything crossed.
     
    RL_sparky likes this.
  17. Ember

    Ember Senior Member

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    Consider the arguments in “Estimating disease-burden in the US”— that multiple sclerosis, an illness with many similarities to ME, receives over $200 per patient per year and that funding for ME research should be equivalent to $188 per patient per year:"
    Consider too Resisting Attempts to Silence #PwME: “Finally, you co-opt the realists (the pragmatics willing to work within the system) into compromise” (https://relatingtome.net/2017/11/01/resisting-attempts-to-silence-pwme/).
     
  18. neweimear

    neweimear Senior Member

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    I agree totally that we should be getting so much more but how do we make them give it...I just hope it keeps increasing
     
  19. Ember

    Ember Senior Member

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    Dr. Lipkin also applauds the advocacy of Solve ME/CFS Initiative:

     
    Diwi9 likes this.

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