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!
AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
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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. Nielk

    Nielk

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    ' Good Gut Hunting'. I love it. Very original!
     
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Sorry - my link won't open for some unknown reason (at least for me). This may be the study in question but, if not, it is a good enough one!

    http://obs.rc.fas.harvard.edu/turnbaugh/Papers/David_nature12820.pdf

    Here's an alternative link in case the pdf one doesn't work.

    http://www.nature.com/nature/journal/vaop/ncurrent/abs/nature12820.html

    Re the point about HIV, this is a different issue, as HIV is known to be caused by a specific virus. I don't think this is likely to be the case in ME, at least not most cases. Lipkin may have previously been looking for specific pathogens but I think he may have changed tack. This recent PR article may clarify:

    http://forums.phoenixrising.me/index.php?threads/lipkin-finds-biomarkers-not-bugs.25234/

    Re other evidence for treating ME successfully by changing the gut microbiota through diet, supplements, antibiotics, etc., there is also the small Maes and Leunis study

    http://integrativehealthconnection....1/Leaky-gut-in-CFS-treatment-of-leaky-gut.pdf
     
  3. Ren

    Ren Primum Non Nocere

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    @Simon, does the campaign still want name suggestions (post 179)?

    If so... Cash for Cure // Fund Microbiomic Exploration // Cure Wanted // The Million Dollar Answer // No stone unturned. // Explore. Record. Cure. // Battle of the Bugs // Lipkin hates loves your guts! :D

    Perhaps Lipkin could auction off the naming rights (of new bugs) to the highest bidder (with a guaranteed lowest bid of course)?
     
  4. Sasha

    Sasha Fine, thank you

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    Hi Ren - we're no longer in the market for names - currently drawing up a shortlist from the ones produced on the dedicated thread for that - sorry you missed it! Thanks anyway.

    I love that idea of an auction of naming rights! I'll add it to the list of possibilities. :thumbsup:
     
    Ren likes this.
  5. anniekim

    anniekim Senior Member

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    I am surprised that Lipkin suggests this - although I take on board it all depends on the findings of the study - as I know quite a few people have tried this, especially KDM patients, with not significant benefits in many. I remember reading about one girl who went to see KDM after only being ill for a short while and did the abx probiotics rotation and did recover. I wonder if abx and probiotics work better at the start of the illness before the immune system gets very dysfunctional, all speculation of course

    Anyway I still very much support this study and all the work Vli and team are doing in trying to get funds raised
     
    Simon, Ritto, Firestormm and 2 others like this.
  6. Kina

    Kina Moderation Team Lead

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    Please note, I have taken 20 or so posts from this thread and created a new thread here

    Please try to stay on topic on this thread.

    Thank you. :):):)
     
    Nico, aimossy, Firestormm and 3 others like this.
  7. Simon

    Simon

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    beaker, Nico, Sasha and 7 others like this.
  8. Firestormm

    Firestormm Guest

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    beaker, Nico, Sasha and 2 others like this.
  9. drewmaster

    drewmaster

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    Does anyone have an update how much has been raised so far?

    Thanks!

    Drew
     
    vli and Ritto like this.
  10. vli

    vli

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    Our contact for this at Columbia returned today and I am happy to report that as of today, we have raised $14,186 from 154 donors :balloons::thumbsup::balloons:
     
    beaker, Nico, Valentijn and 7 others like this.
  11. Esther12

    Esther12 Senior Member

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    Not a bad start, but still a way to go. Thanks to all those who have already donated.
     
    vli and Simon like this.
  12. Ritto

    Ritto

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    beaker, Simon, Sasha and 3 others like this.
  13. Simon

    Simon

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    Thanks to the excellent new ME Global Chronicle newsletter for giving this appeal a mention:

    They also carry a brilliant editorial from Prof Leonard Jason:

    Ian Lipkin has mentioned more than once how impressed he was with the way HIV/AIDS campaigners pressured government to do more. He was a newly-qualified physician when he arrived in San Francisco in the early 1980s, just at the then-unamed AIDS epidemic was taking hold; at that time many doctors were reluctant to treat these patients and he told me about some of the problems he had persuading colleagues to let provide novel treatments to his AIDS patients. He also mentioned how some of the first HIV research was funded by private donors, work that persuaded a relucant government to fund more research.
     
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  14. Radio

    Radio *****

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    Last edited: Mar 1, 2014
  15. vli

    vli

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    Update on amount of funds raised (every Friday!)

    Thanks to all of you, as of today we have raised $14,895 from 169 donors :balloons::thumbsup:
     
    Sushi, SOC, Ritto and 3 others like this.
  16. Daffodil

    Daffodil Senior Member

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    Our disease is NOT caused by Lyme, mold, herpes viruses, gut bacteria, or anything these specialists are trying to look for and treat. These are infections our bodies should be able to control.

    It is AUTOIMMUNE. see the new paper: Transcriptional de-repression of ERVWE1 following influenza A virus infection.

    Again, the ONLY researcher I am aware of, who is looking at this factor, KDM/Lombardi/WPI.

    Why do we continue to support the search for pathogens? I find this very frustrating.

    Of COURSE we will have pathogens, gut inflammation, differences in gut flora. This is a given.

    I urge you to support those who are narrowing in on the true cause.

    some HIV drugs helps some people because they act on HERV. Ampligen helps some people because it makes us produce interferon, so our bodies can again control the infections.

    I am so scared that these pathogen studies will be more of a waste of precious time some of us do not have.
     
    Last edited: Mar 1, 2014
  17. Sean

    Sean Senior Member

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    Just donated.

    Taking a cue from Wally's comments, I added an extra $25 on behalf of those patients who cannot afford anything at the moment.

    (Excuse delay in donating, had to clear a couple of largish and unavoidable bills first.)
     
    Sasha, SOC, Ritto and 6 others like this.
  18. geraldt52

    geraldt52

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    Is there any chance of getting an update on how the crowdfunding project is progressing? Are there updates on another thread that I'm not aware of? I wish I could help, but I can't do anything other than contribute funds, and I'm a bit anxious that we not lose momentum.
     
    vli, Simon, Ritto and 2 others like this.
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  20. Firestormm

    Firestormm Guest

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    Evening Gerald,

    We are I think able to confirm that we should have our primary plaforms - website and Facebook pages and twitter feeds - launched before the US conferences begin 19/20 March at which both Montoya and Lipkin et al will all be presenting. Hopefully, the presentations and interviews, will provide a boost to the campaign efforts so we wanted to ensure the platforms were in place by then. Also if any announcements are made with regard to publication of papers pertaining to the CDC Broadcast last year from Lipkin, or Montoya's more recent seminar on the subject, then the campaign would - we think - also benefit. Any announcement would of course likely be made at these conferences.

    So, we are resolving issues relating to: name, platforms, donation methods, content, logo's and images, lining up interviews on video etc. etc. and expanding our network of contacts to reach a much wider community across the world. We will shortly be engaging with members of the medical community who we'll be hoping to bring on board including those who were involved with the blood study, that Lipkin spoke about in his CDC broadcast.

    The conference presentations will be followed up with articles that can help continue to raise awareness of the campaign, and we have people at both conferences to record and pass back information as it happens.

    We have also posted this article above to co-cure, and we have a Spanish translation that I will hopefully publish this week. Further translations of the campaign work - and the campaign itself - are something we would like to work on and are approaching others to help us do this.

    So, hopefully, you should see the fruits of this voluntary labour in coming weeks and as a result we hope the campaign contributions will really start to stack-up.

    Hope that helps.
     
    Last edited: Mar 2, 2014
    Sasha, Simon, Ritto and 6 others like this.

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