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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. geraldt52

    geraldt52

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    Thank you, Firestormm, that was exactly what I was hoping for. Thanks to everyone for their work on this.
     
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  2. Guido den Broeder

    Guido den Broeder *****

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    KDM presents a brand new cause of ME every year, each time discarding his old one. Last year it was Lyme, now it is the flu. Sorry, but no. There is no reason to abandon all other research because KDM has found another small anomaly, not even in ME patients.

    The erroneous immune response in ME can be explained by latent herpes viruses keeping differentiated B-cells alive for their own survival, thus hindering the immune system's flexibility to deal with a new, enteroviral infection.

    This model has stood unrefuted for 25 years but it needs confirmation.
     
  3. drewmaster

    drewmaster

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    vli, thank you for the updates on the progress of the fund-raising!

    Firestormm, thank you for all your efforts that you describe in your March 2 post.

    Daffodil, to me it seems remarkably close-minded to categorically state that "it is autoimmune" and dismiss any of the other factors that you listed. It is entirely possible that, in some patients, some kind of pathogen in the gut is throwing the immune system out of whack. Please try to keep an open mind and not dismiss the efforts of scientists and researchers who know a lot more than you and I do about the intricacies of the human body. Thanks.

    Drew
     
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  4. Daffodil

    Daffodil Senior Member

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    lol ok fair enough. i do tend to get carried away with my flavor of the month. but keep in mind Lombardi has done tissue studies using next generation sequencing already....
     
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  5. Art Vandelay

    Art Vandelay

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    Thanks to Firestormm and everyone else who is working so hard on this. I donated.
     
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  6. Marco

    Marco Old blackguard

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    Hi All

    I've just today received a very nice 'thank you for your donation' letter from Columbia University (cc'd to Dr Lipkin).

    If Ian Lipkin manages to 'crack' ME/CFS these letters could be a little piece of history (OK unlikely to become collectable if we hopefully get donations by the thousands).

    So come on - get to say I was part of this!:)

    @Firestorm et al. Just a small point - nice as it was to get this letter I couldn't help noticing that the postage was over a dollar that would have been better kept for the study. I don't know if PR members are in direct contact with Columbia or what its policy is (or is it a tax deduction thing) but perhaps thank you letters could be restricted to big donors?
     
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  7. Sasha

    Sasha Fine, thank you

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    Hi @Marco - I also got a letter from them today thank me for my donation and wish I'd kept the envelope to see what it had cost.

    We'll be approaching them about that letter - we can see some potential for it helping to build the campaign - and that's a good point about cost. An email might be more appropriate for many donations.

    :thumbsup:
     
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  8. Marco

    Marco Old blackguard

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    Hey @Sasha

    We both have our names on the same sheet of paper as Ian Lipkin's.

    Bet he's chuffed ;)
     
    Sasha likes this.
  9. Simon

    Simon

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    I'm pretty sure that postage comes out of a different 'pot' to the microbiome study so won't make a difference - and this way everyone gets their little bit of history :)
     
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  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Yes, it can be very annoying when part of your donation is wasted with a snail-mail acknowledgement. I actually stopped participating in the regular prize draws for one charity because it kept sending thank-you letters. I emailed them about it, and put notes on my entry form, and even ticked the 'no acknowledgement' box on the entry form when they started including these. I still got acknowledgments! :bang-head: My donations were not meant to go to the mail service!
     
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  11. Ritto

    Ritto

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    I too received a thank you letter. My first reaction was that it was a waste of one dollar and ten cents for the postage but then I realised that I got a fuzzy feeling (don't often get them!) from the letter which will probably make me try to send the next ten dollars sooner than I'd planned :)
     
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  12. Marco

    Marco Old blackguard

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    Dammit Simon. You're using that ...... LOGIC thing!

    Absolutely right - its bound to be coming out of a central admin budget which would explain the cc'ing to Lipkin.
     
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  13. Sasha

    Sasha Fine, thank you

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    And it was on such nice paper! :)
     
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  14. Ecoclimber

    Ecoclimber Senior Member

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    FYI: The NIH has allocated $715 million dollars to the Human Microbiome Project.
    http://hmpdacc.org/
    https://img.jgi.doe.gov/cgi-bin/imgm_hmp/main.cgi?section=FindGenomes&page=findGenomes&domain=all
    http://hmpdacc.org/tools_protocols/tools_protocols.php

    Funding has been given to numerous institutes to investigate microbiome in various diseases.
    https://www.bcm.edu/departments/molecular-virology-and-microbiology/cmmr/index.cfm?pmid=23880

    You would think they could chisel off $1 million for ME/CFS.
     
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  15. vli

    vli

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    No kidding Ecoclimber. The NIH denied him.
     
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  16. Firestormm

    Firestormm Guest

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    I just wanted to highlight an article written towards the end of last month, that was sent to me the other day. It is about a study that used similar technology on the microbiome as Lipkin will in his own proposal that we are raising funds for him to begin.

    We did discuss this paper when it came out last year. You can read Simon's comments HERE for example and their bearing on Lipkin's work, and also a comment from Professor Edwards HERE. All findings need replication of course, and that will include anything Lipkin finds and creates a theory from. Such is the nature of science.
     
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  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Firestormm

    Interesting to me personally as my earlier tests showed a huge overgrowth of Prevotella. It normalized with treatment.

    Sushi
     
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  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Seemed interesting until I looked at the article and found that it relates to a study on MICE.

    So, there is perhaps a 50% chance that the findings are relevant to humans.

    I have posted an article giving some info about mouse 'models' of the human gut here.

    Similar problems will apply to other animal 'models'.

    The details of the human research are only of 'associations'. These do not tell us anything about causality.

    I do subscribe to the hypothesis of the microbiome being involved in the causal chain of autoimmune disease, but personally doubt whether one particular microorganism is of significant importance. A range of differences has been found between the gut flora of healthy subjects and those of autoimmune patients. The real issue may be the balance rather than specific microorganisms.
     
  19. Firestormm

    Firestormm Guest

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    @MeSci You must be (and I know what you are going to say) rather pleased that at least Lipkin is looking in humans for the bugs in the first instance.

    The thing with RA was that - and from what I have understood - the association with the microbiome had been made in humans and then they took it to mice models. It may be that Lipkin will do similarly - as was said.

    I know you feel strongly about this, and I agree that seeing something in mice, doesn't mean the causal mechanism or pathways can be replicated in humans. But first things first I think. Let's hope Lipkin and his team can find some bugs and proliferation that are noticeably different in patients than in controls and then we can see what the next stage might be.

    I think this is going about it the right way - foundations first and all that. Then commeth the theories and the further testing of them. And then we might one day learn if something in the microbiome can be tied to this immune activation that is increasingly being seen and reported on.

    The microbiome is I think a necessary 'frontier' for ME research and I am pleased to support this study, whilst acknowledging it cannot hope to be the final word on the subject and that other scientists will - and are - carry out their own research.

     
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  20. vli

    vli

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    Update: as of Friday 7th Mar, we have raised $16,488 from 184 donors :):balloons::balloons:
     
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