1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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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. biophile

    biophile Places I'd rather be.

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    Million4ME is sort of catchy, if a ME criteria is going to be used.

    How about Million4MEBug? Too much?

    "Time to give a buck".
     
    Last edited: Feb 14, 2014
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  2. vli

    vli

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    I like FundME.
    I can only think of BucksForBugs
    Can't sleep so still musing...
     
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  3. vli

    vli

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    Oh and then in the blurb, we can write "you can give as little as a buck, just like the campaign says" or whatever

    The Bug Identity--alright I'm watching way too much television
     
    Last edited: Feb 14, 2014
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  4. Tuha

    Tuha Senior Member

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    or:
    no hug for bug

    bug in jug

    And then to have animated logo with scary Ian Lipkin killing a bug with an injection or something like this

    Ok that´s everything from my small creativity :)
     
  5. Bob

    Bob

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    More Ideas:

    TheMillionDollarPatient

    TheMillionDollarProject

    MillionDollarBugHunt

    MillionDollarVirusHunt

    MillionDollarCure
     
    Last edited: Feb 14, 2014
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  6. Jon_Tradicionali

    Jon_Tradicionali Senior Member

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    Zogor-Ndreaj, Shkodër, Albania
    My idea out of thin air:

    CFSbugsME

    Don't all thank me at once
     
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  7. Sean

    Sean Senior Member

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    biophile's suggestion is good.

    Million4ME

    Though the ME v. CFS thing could be an issue.
     
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  8. Bob

    Bob

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    I quite like Million4ME except that perhaps it could be misinterpreted as being greedy.

    i.e. "a million for me"

    'Million4You' might seem less greedy, but perhaps not so helpful.
     
    Last edited: Feb 14, 2014
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  9. Sasha

    Sasha Fine, thank you

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    I like it (I'd separate the words out, though!).

    Does what it says on the tin - if Dr Lipkin was agreeable, it could alternatively be, 'The Lipkin Million Dollar Bug Hunt', though that doesn't roll off the tongue so easily.

    Just like 'Canary in a Coalmine' and 'Blue Ribbon' don't have ME or CFS in the title, it avoids attracting a lot of side-issue arguments about what to call our disease. Doesn't say 'microbiome' to scare people off who don't know what that is.

    A strong contender! :thumbsup:
     
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  10. Sasha

    Sasha Fine, thank you

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    Or, if we wanted to be more formal, we could have 'Million Dollar Pathogen Hunt' or 'Million Dollar Pathogen Study'.
     
    SOC likes this.
  11. Daffodil

    Daffodil Senior Member

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    I think the WPI people will publish in the latter part of this year.

    But they have already done cutting edge work with sequencing of actual tissue in the last paper.

    Dr. Lombardi works 18 hr days trying to crack this. Even Saturdays. Those are some pretty dedicated people.
     
    Kati likes this.
  12. Simon

    Simon

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    :balloons:

    update from Ian Lipkin's lab in Columbia:

    As of today, we have 114 donors and a total amount of $11,220 raised for CFS research.

    Thanks to all who have donated, and please don't forget to ask friends and family. Also now seems a good time to mention the generous offer from @Wally
    More donors declared - thank you!
    missed off earlier
    I'm sure I have missed several people so please let me know and I will add your names
     
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  13. Nico

    Nico Senior Member

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    #August59: I've been in touch with the administrator of Lipkin's team about alternative fundraising efforts.

    We as a community of patients, family, and friends cannot be relied on 100% for all the fundraising around ME. There MUST be a broader reach - we can't rely solely on people who "get it".

    I urged them to look at "Global Giving" as a platform.
    http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=11648#.Uv5CFV7hOME

    Just sent the email off now, so I may not hear back before Monday, I'm guessing.
     
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  14. rosie26

    rosie26 Senior Member

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    The MillionDollarBugHunt jumped out at me too. I like that one. Have been trying to think of names but the ones I keep thinking of are more comical than serious ! I have too much head inflammation at the moment :ill:ugh
     
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  15. bel canto

    bel canto Senior Member

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    I'm not good at this, but just a few ideas....

    Ian's Hope

    D…..ing for dollars

    Gutsy …..

    Lipkin's Lament (just kidding)

    Something that echoes a familiar title, or a play on words, or just alliteration or a theme.
     
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  16. bel canto

    bel canto Senior Member

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    I'm going to embarrass myself, but I'll throw out a few more:

    help for …..

    an inner space odyssey

    the biome express

    Microbiome magic

    Microbiome mapping

    Funding for friends and family

    A bridge to health

    Dial M for Microbes

    Good Gut Hunting
     
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  17. geraldt52

    geraldt52

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    If someone is keeping a record, I made a small donation to Columbia on Wednesday, and have several more people lined up to do the same in the coming days. I will contribute more later, but I want to see it get off the ground.

    My suggestion for a fundraising name: The ME Campaign to Help Ourselves. Maybe it would prompt people to ask what that means, and maybe at some point we could shame the government into helping us.
     
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  18. Ember

    Ember Senior Member

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    Going for the anacronyms — LIFT OFF for ME Research (as in “Lipkin Initiative Funds-in-Trust: an Open Funding Fellowship for ME Research”)
     
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  19. vli

    vli

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    Answers to queries


    As most may know a lot of questions have arisen from the discussion of the article and thanks to @Wally and @Simon I can now give answers to some of the more pressing questions raised.


    • What happens if our $1 million target were not reached?

    On Tuesday, Columbia informed me that should this happen that donations would still go towards "ongoing CFS research". As Simon's article stated, this means the white blood cell study that follows Lipkin's initial search in the plasma, plus the gene expression study also mentioned in the article which Lipkin confirmed has already been paid for.

    Today, however @Wally has received confirmation from Columbia that Dr Lipkin's office will pass onto him the questions of whether the sample size might, for instance, be reduced from 200 microbiomes--or if the funds might be used in a collaboration with another group like the Open Medicine Institute or CFI--should less than $1 million be raised. 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!​

    • There has been some concern that donations from people who omitted to write "microbiome study" in the comment box at Columbia's giving page may not have gone specifically to the microbiome study. Columbia has clarified initially that this study is currently the only ME/CFS project Dr Lipkin is working on and thus, all donations made to "Chronic Fatigue Syndrome" would be directed to the microbiome study and nowhere else. However, to avoid any future confusion we have requested that Columbia change their drop-down menu so that the option specifically said "ME/CFS Microbiome study". We hope this clarifies things for @maryb and others!


    Campaign name

    If you have joined the crowdfunding group or seen Simon's post on names you will know that we have been trying to come up with a suitable name for our crowdfunding campaign. Currently we have a list of both humorous and serious (most of them raised here) but are in need of something more inspiring and inclusive than what's been suggested--so we should leave out anything too rude or silly! We understand that this is difficult as serious names can be more inclusive and funny names more inspiring but the sooner we have a name, that sooner we can set up a website and create our brand :)
     
    Last edited: Feb 14, 2014
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  20. aimossy

    aimossy Senior Member

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    Million dollar bug hunt. I like this suggestion.:)
    Im so tired Im blunt at the moment.
     
    Last edited: Feb 14, 2014
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