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!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
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The Lipkin Microbiome Crowdfunding Campaign Launches!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 27, 2014.

  1. Sasha

    Sasha Fine, thank you

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    26,000 views that article by David Tuller has had!

    I hope they're all donating! :)
  2. vli

    vli

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    Yes that's right.
    aimossy and Firestormm like this.
  3. drewmaster

    drewmaster

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    I echo what vli wrote ... a huge THANK YOU to everyone at Phoenix Rising for giving this crowdfunding campaign so much exposure! This well may prove to be the study that unlocks the mystery of CFS for so many people.

    But we need everyone's support here. If you have not donated yet, please, PLEASE do so now!! Trust me, you will feel great after you do.

    Thank you.

    Drew
    Nielk, rosie26, Firestormm and 4 others like this.
  4. anniekim

    anniekim Senior Member

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    Fantastic initiative, a huge thank you to all who are involved. My mum and I have both donated and in the coming months I will again when finances allow. Fundraising events are a good way to see those dollars rise. A couple of years ago I did a screen free weekend for Invest in ME and was able to reach out to family and friends. I am bedridden so the only thing I could do was something like a screen free weekend.

    I see some people post up requests for donations within the ME community which is great but as we only have finite resources spreading it out to family and friends increases funds. Let's do this :D
    Nielk, rosie26, Firestormm and 3 others like this.
  5. Soundthealarm21

    Soundthealarm21 Senior Member

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    Chipped in my 2 cents (well, a little more than that :p). I hope we can get this project up and running!
    Sasha, Nielk, rosie26 and 4 others like this.
  6. 5150

    5150 Senior Member

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    The NIH, Kathleen Sebelius, and President Obama should be ashamed. Truly Ashamed.
  7. cigana

    cigana Senior Member

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  8. beaker

    beaker CFS/ME 1986

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    Maybe we should sent them a short letter and ask them for a donation. CC a copy of letter to the press.
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I think you need to have a conscience in order to be ashamed, KS and PO don't have that, so I doubt they feel all that bad, look what they did to the insurance market in the US under the guise of getting more people insured and better care, neither has happened on the whole (I don't know of any local CFS drs who take Medicare), exactly the opposite.

    They are political animals and only care about the political implications, which is why he has unconstitutionally (read as the Law of the land, and which his opposition sought to do months ago), but only when they find it convenient) altered his law about 30 times now, and counting!

    GG
    Art Vandelay likes this.
  10. aimossy

    aimossy Senior Member

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  11. Violeta

    Violeta Senior Member

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    Wasn't the original amount that Lipkin was asking for $1,000,000? I missed the information about the cost rising to $1,270,000. Is there an explanation for that somewhere?

    And is the number $17,800+ the current amount collected so far? Is the number on the website up to date?

    Thanks
    Last edited: Mar 30, 2014
    Sasha likes this.
  12. Sasha

    Sasha Fine, thank you

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    Originally, the CII (Lipkin's institute) set an 'initial goal' of $1m (it was described that way on their website and in Simon's interview with Dr Lipkin). The cost of the study has always been $1.27m (again, also set out clearly in Simon's article as well as mine).

    I think the CII must have thought it sounded like a nice round number and that it might encourage people to aim at an interim goal but, although they had always been transparent about it only being an initial goal, they've switched the focus to the actual target, which I think makes good sense.

    The website now shows when the total was last updated and when to expect an update. However, even the updated total is going to be a few days behind actual donations because of bank clearing times. My guess is, even a newly updated total is maybe as much as five days out of date.

    I'm dying to see what it looks like by the end of the week - lots of people here and on the campaign Facebook page are saying they've donated. :thumbsup:
  13. Violeta

    Violeta Senior Member

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    Thanks, Sasha,
    It had been said somewhere that if Lipkin doesn't raise the $1,000,000 the amount that he does raise will be given away to a different research program. Do you know if that $1,000,000 mark has also been changed to $1,270,000?

    If so, only $1, 252,200 to go!
    aimossy and Sasha like this.
  14. Sasha

    Sasha Fine, thank you

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    I haven't seen that anywhere and it contradicts the FAQs page of the site, which is based on direct communication with Lipkin's institute (and talks about $1.27m, not $1m):

    http://www.microbediscovery.org/faqs/

    Specifically:

    What if we don’t reach the $1.27 million target?
    Dr. Lipkin has agreed that if, by 31 December 2014, $1.27m has not been raised, he will use the money raised to develop pilot data that will allow him to be competitive for funds needed to complete the work. He is fully committed to the project.​
  15. snowathlete

    snowathlete

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    I donated. Last week in fact, but didnt get round to posting it until now. donating is what counts most. You can always post about it when you feel up to it later, even weeks later, as it helps encourage others to donate as well.
    Thanks everyone involved in setting everything up and getting this article out there!
  16. Battery Muncher

    Battery Muncher Senior Member

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    Donated!
    aimossy and Sasha like this.
  17. Sasha

    Sasha Fine, thank you

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    Thanks so much for all the donations, guys - keep 'em coming!

    I'm about to flog some stuff on Ebay to support this - it's a great way to raise extra cash.
    aimossy likes this.
  18. Violeta

    Violeta Senior Member

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    @

    @ Sasha, I was looking for something else and found where I had read that if all the money isn't collected whatever funds are collected will be passed on to another ME/CFS project.

    "If I may take the chance to do so it should be noted here that this is similar to both the Norwegian and UK Rituximab campaigns in that, in those campaigns, there were similar clauses by which if the targeted goal was not reached, any funds raised would still go to other research studies for ME. We are however expecting to raise $1 million and thus have placed this option on the back burner!"

    Forgot to save the link. I'll get it.
    Valentijn likes this.
  19. Bob

    Bob

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    Hi Violeta, this information is out of date. The crowdfunding campaign team now have a commitment from Dr Lipkin that, if the crowdfunding goal isn't reached, then the money will be used for a pilot study.
    Valentijn likes this.
  20. Violeta

    Violeta Senior Member

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    Okay, thank you, Bob.
    Bob likes this.

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