1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Interview: Ian Lipkin’s Million Dollar Appeal for Microbiome Study

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 10, 2014.

  1. Izola

    Izola Senior Member

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    NIH isn't about to cough anything up after they spit on us. I hope I am wrong, but I doubt it for the time being. They have shown at least me that they have no shame.
  2. Izola

    Izola Senior Member

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    Thank You Wally! :):thumbsup:
    vli and Simon like this.
  3. Izola

    Izola Senior Member

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    Thank you, Simon (from Wally)




    I phoned Columbia this afternoon. The weather there is getting awful!! AS I said earlier, I donated. Thank You, Simon.
    Last edited: Feb 13, 2014
    Sasha and Simon like this.
  4. Izola

    Izola Senior Member

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    I Phoned Columbia this afternoon. Add me to the tally. Izola
  5. Izola

    Izola Senior Member

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    The NIH and the CDC could, but don't want to, envision anything for us except for us to go away.
  6. Firestormm

    Firestormm Guest

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    @Izola

    I think this was the latest total we received, so as at Tuesday it was $5,312 :)


    I believe Vanessa will try her best to keep this thread manually appraised on the total, until we can set something up that is more automatic.
    anniekim, Izola and aimossy like this.
  7. Izola

    Izola Senior Member

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    He has a reputation for results, though I haven't been keeping up with anyone for the past 7-10 years.
    Simon and aimossy like this.
  8. Izola

    Izola Senior Member

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    NIH wouldn't give us anything if we fell dead at their door. I forget who NOR and CFI are. Or maybe I didn't know in the first place.

    Maybe someone could give the rest of us a clue. The alphabet stew and other non-usual references can confuse newcomers and those unable to be regulars.
    Last edited: Feb 13, 2014
  9. Nico

    Nico Senior Member

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    Thank you vli. That is not enough, of course.

    I want to explore methods of doing online fundraising for this, but I can't put any effort into it today. I've spent my morning composing an email to a German reporter about the science behind the illness. Constantly trying to "enlighten" above and beyond the "depression" stigma.

    Anyway. Segue, pardon me.
    aimossy and Simon like this.
  10. acer2000

    acer2000 Senior Member

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    I had the same thought myself... its like they are talking out of both sides of their mouth.

    1. Not funding because of lack of grant proposals.
    2. Get a grant proposal from a well known, well respected, research lab at a major university to study a hot topic (microbiome) in an underserved and expensive (to society) illness.
    3. DENY!

    4. Instead give 1M to IOM against all expert advice.
    Valentijn and vli like this.
  11. Wally

    Wally Senior Member

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    Simon,

    Well done on this article. I did some of my own due diligence and talked directly with Columbia to make sure that any money that I donated would go directly to Dr. Lipkin's project. I am confident that the majority of the money that I donate will go directly to fund this research and the amount going to overhead for the project will stay within the 10% ball park that I believe is an acceptable level for an organization to use for administrative and other overhead costs.

    I just want to be sure that when others decide that they too would like to make a donation to this research project that they look at the donation page very carefully and make sure that their donation is earmarked to go directly to this particular project. Very excited to see another opportunity for patients to raise their voices up to be heard.

    I also want people to know that if Dr. Lipkin's research project is not the particular research project that they feel ready to pull the trigger to make a donation to, they don't need to feel that they have been left out in the cold. They can hop on over to the Open Medicine Foundation and see what research projects a stellar group of MECFS physicians and scientists think would be worth funding. Note Mady Hornig works with Dr. Lipkin and she is on the OMNI Merit's list of collaborators. See, http://openmedicineinstitute.org/research-initiatives/mecfs-merit/. I plan to make donations to both of these organizations (directly to Columbia and directly to the OMI Foundation).

    I also realize some people may not have the resources to make a donation. So, I think it is important for each patient to know that they should not feel left out if they simply can't afford to make a donation. I am hoping that maybe we could even set up a buddy system, where those who can afford to donate (and I mean any amount to donate) could be paired with a buddy who would like to make a donation, but is unable to do so right now. It could be an anonymous pairing and/or an anonymous amount for the donation.

    For instance if you would like to be my donation buddy, I am volunteering to make a donation on your behalf (pseudo names are fine with me) to Dr. Lipkin's study at https://giving.columbia.edu/giveonline/?schoolstyle=5881&alloc=21677. Alternatively, you can select one of the research projects listed on the OMI Foundation site at http://openmedicineinstitute.org/research-initiatives/mecfs-merit/. Or if you really are struggling to decide where you would like a donation to be made, I will split the donation between Dr. Lipkin's project and one project on the OMNI Merit list.

    The donation amount that I will be willing to make for my donation buddy is $50.00 for one study or divided between two studies (i.e. $25.00 for Dr. Lipkin's microbiome project and $25.00 to one project that you select from the OMNI-Merit list). Leave me a message on my Forum member e-mail, if you would like to buddy up. I will come back and post as soon as I receive a buddy request and let you know if there are other buddy requests that have come through. If no one decides to be my buddy, I will be very sad :(, but I will still make a donation in honor of my namesake Wally, who is somewhere up in beagle heaven probably enjoying a fun day chasing bunny rabbits and squirrels.

    Together let's make tomorrow a great Valentine's Day for our patient community!

    Wally
    Sean, MeSci, vli and 4 others like this.
  12. acer2000

    acer2000 Senior Member

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    Bob I think this is a great idea. If for no other reason than to motivate a focused letter writing campaign.
    Bob likes this.
  13. drewmaster

    drewmaster

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    I just gave, because I firmly believe that if anyone can solve this riddle, it's Ian Lipkin. If you haven't given already, PLEASE, find it in your heart to do so. Even a dollar will help. Whatever help you can offer will make a difference.

    Thank you.

    Drew
    Ruthie24, Simon, vli and 3 others like this.
  14. vli

    vli

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    LOL I'm so sorry Izola.

    CFI = Chronic fatigue Initiative

    I meant 'neither NIH nor CFI are funding him...'.
  15. August59

    August59 Daughters High School Graduation

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    I have read most of this thread, but may have missed this thought. Does anyone know of a list or some other way to solicit organizations and/or possibly companies (especially larger ones) to see if there is a way to acquire matching funds for the funds donated by patients or individuals?

    So, the "Microbiome study" did not fall under the original "CFI" funding? Dr. Lipkin has not finished the CFI study has he?

    Thanks
    Nico and Bob like this.
  16. Daffodil

    Daffodil Senior Member

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    you can also donate to the WPI, where all the most cutting edge work is being done, under dr. Lombardi's team. they will solve this faster than anyone, I think.

    if people are still angry over the xmrv thing or the mikovits thing, we need to get over it because they are doing some fabulous work over there.
    vli likes this.
  17. Sasha

    Sasha Fine, thank you

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    That's absolutely true - don't be put off if you can only chip in the price of a cup of coffee. It all adds up. And it feels good to do it!

    And if you're flat broke (many are!), you can also help by spreading the word... :)
  18. biophile

    biophile Places I'd rather be.

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    @Daffodil . Any examples of the cutting edge work being done at the WPI? I don't think many people are going to get over the WPI's history so easily without a good solid reason, like a published paper which stands replication.
    Nico, Firestormm and aimossy like this.
  19. Simon

    Simon

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    Name the campaign!

    The Lipkin fundraising group is beavering away in the background (join us!) but we are struggling to find a snappy, memorable name - and we can't set up websites or social media until we have one.

    So, please help us out if you can with a suggestion, or say if any of those below grab you. Thanks very much

    Suggestions to date:

    Million4ME

    FundME

    Hunting for a Cure


    Big Bang Study 4 Gut Bugs
    Million $ BIG BANG 4 GUT Research
    The 1 million BIG BANG FOR GUT study


    Lipkin's $1 million dollar appeal

    The $1 million microbiome project
    Sean, vli, Bob and 1 other person like this.
  20. Tuha

    Tuha Senior Member

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    no luck for bug
    no more luck for bug

    But english is not my language - so maybe it doesnt sound good
    aimossy likes this.

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