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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. Daffodil

    Daffodil Senior Member

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    I haven't read most of this thread, but haven't there already been studies on gut bacterial profiles of CFS patients? it seems that demeirleir's team, who has already tested actual gut tissue, found HERV proteins and is now looking into why HERV proteins are expressed, is way ahead of lipkin.
     
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  2. Kati

    Kati Patient in training

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    For the record, I have made a donation to Columbia as well.
     
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  3. Jon_Tradicionali

    Jon_Tradicionali Senior Member

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    Zogor-Ndreaj, Shkodër, Albania
    My thoughts exactly.

    KDM has figured this out long before Lipkins idea for this study. Plus there have been countless other studies which have been conducted on the microbiome and its role in human disease.

    But I guess it's still great that we are getting closer to finding a concrete cause and subsequent treatment.

    Sometimes I wonder if it will hold much value after some, such as myself, have already lost decades of life.
     
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  4. vli

    vli

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    I can certainly understand if there are members who feel this way.

    However when I was asking around for opinions (which occurred before the article was published), a De Meirleir supporter pointed out to me the fact that De Meirleir did not make an appeal to the public specifically and neither does he have a study "ready to fund", while Dr Lipkin did and does.

    I would be very happy to donate to any campaign that could be drawn up to support a De Meirleir study into HERVs, if he has one :)
     
  5. Jon_Tradicionali

    Jon_Tradicionali Senior Member

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    Zogor-Ndreaj, Shkodër, Albania
    @vli

    The only missing link in the CFS bubble is the greed and pride of each and every CFS "specialist" which has resulted in extremely limited collaborations and subsequently extremely limited results.

    It is 2014 and the CFS pandemic has not been solved yet. It will be 2020 and I bet it would be the same old story.

    People like us on PR being our own investigators.

    Thumbs up to Lipkin saying he is in a hurry to want to solve an overdue mystery. Even if KDM has already provided the blueprint years ago.
     
  6. vli

    vli

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    @Jon_Tradicionali

    I agree the funding situation regarding ME is far from ideal to say the very very least. However, I think the whole reason I contacted Lipkin in the first place is that I would feel worse than I did if I did nothing. Now, if De Meirleir draws up a study and appeals to us to fund it I think posts like yours, and Daffodil's, are proof that he would have people backing him and organising crowdfunding for him almost immediately... neither Lipkin nor anyone here is preventing that from happening, and like I said I would be more than happy to give to a crowdfunding campaign for Prof. De Meirleir.
     
    Last edited: Feb 12, 2014
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  7. Sean

    Sean Senior Member

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    Is there any reason that the work of both Lipkin AND De Meirleir cannot be supported by the patient community? :rolleyes:

    As to donating to Lipkin's study, I will chip in a $100 AUD (and pretty sure I can get one two family and friends to donate), as soon as I know what happens to the money if we don't reach the target amount (or enough of it to get the study underway while we look for more funds).

    Well done, Simon, for scoring the interview, and thanks to Dr Lipkin for giving you the time.
     
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  8. August59

    August59 Daughters High School Graduation

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    This study could be a very, very good thing for us. I also, and I believe Dr. Lipkin does to that the science and data from this study could reach way past ME/CFS patients well into other diseases with unknown cause. As well it could lead to better and more efficient treatments for many known diseases that currently have treatments available.

    This is what I wish the NIH and CDC could envision and do what it takes to get this study completely funded now!!!!

    I believe it is time to write my senator another letter! In the mean time I think I might have a yard sale to see how much I can come up with to make my contribution. If we have to build this road one brick at a time, then that's what we have to do. We should be use to it as we have done before in some form or fashion!
     
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  9. Ritto

    Ritto

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    For the number count, I donated a week ago.
     
  10. Bob

    Bob

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    I'm really excited about all the donations that folks are making. :thumbsup:
    I just wanted to briefly say that if anyone can't donate, then they shouldn't feel at all guilty about it.
    We all do what we can, when we can.
    Only donate what you can afford.
    And no one should feel excluded from this thread if they can't make a donation.
    Just wanted to say that in case some people are feeling bad about not having any spare cash. (I expect that most of us have cash problems.)
    :hug:
     
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  11. Firestormm

    Firestormm Guest

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    Morning :)

    The article at the top of this thread, links to Simon's initial article about the Microbiome in several places, where he talks about previous and current research, including the ongoing study from Invest in ME in the UK:

    I think the main point for me about past research, has been its relative size and competence in comparison to that proposed from Lipkin and his team. I also think that this area is worth investigating further with this proposed study from Lipkin because, at least in part, our forums that talk about the Gut and Treatments for gut issues, as well as diet etc. are one of the most active places on the entire site. It is clearly an area of importance to a great many people.

    Lipkin, if we can raise the money, will be looking at 100 patients and 100 controls in a way that has NEVER before been done - there is a reason it will cost so much - and a reason why perhaps previous studies have really only touched the surface.

    Also, remember, that included in this study, Lipkin and his team will be seeking to confirm their initial work relating to cytokines and immune activation - work that you will hear more about and I hope also be excited by, when the submitted paper is published - hopefully very soon - perhaps even next month.

    When Lipkin looks at the microbiome it will be with more tenacity and scope in the search for pathogens and patterns, than anything that has gone before. It could help confirm De Meileir's treatment practices, and any others we hear about involving anti-biotics and pro-biotics, and the presence of specific bacteria etc. but in any event it will shed much needed light on this entire ecosystem and it's potential role in ME.

    And once he gets the money, Lipkin has said he estimates it taking only a year to complete! :)

    I have a great deal of confidence in the competence of Lipkin and the expertise he and Mady Hornig have put together at Columbia. This is great news for the ME community :)
     
    Last edited: Feb 12, 2014
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  12. Firestormm

    Firestormm Guest

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    I agree Bob. As I said earlier in the thread, this is the first study I have not only felt I really wanted to invest in, but it's the first time really I have been able to invest. And I do regard all donations as investments. But that said:

    There is no minimum donation amount to Columbia and I don't believe there should be any minimum when the main campaign comes on stream either, other than $1.

    We can all I think do something, even if it is alerting others to the Appeal and sharing the article on Facebook or re-tweeting it (whatever that means!) or passing it among our Support Groups locally. And if we cannot afford to make a donation, then perhaps we know someone who will.

    If 1 million patients can't raise $1 million, then it wont take many outside of the American patient community to lend a hand and achieve the goal.

    Good luck to everyone :thumbsup:
     
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  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Here is some more info about the Invest in ME research (private email):

     
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  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Does anyone else think that this sounds unusually fast and perhaps over-optimistic?
     
  15. Bob

    Bob

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    If he is using the samples from his earlier study, then I think that may explain the unusually fast estimated turn-around time.
     
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  16. Firestormm

    Firestormm Guest

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    Back up a bit on this thread (last page I think) and see Lipkin's presentation to Oxford from December 2013. He talks about how things have become so much quicker and more accurate in terms of processing. I also think this helps explain the optimism in his estimated time-frame. Of course it will depend on when he can begin, and I dare say other factors such as ensuring his team are all available, and the speed with which samples can be collected accurately etc. etc. But Columbia has the technology and expertise. Though as you know MeSci, there are no guarantees, hence it is an estimate.
     
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  17. Jo Best

    Jo Best

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  18. Tuha

    Tuha Senior Member

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    Center for Infection and Immunity posted Simon´s article on their facebook page. Maybe we can "like" it or post some comments to show our interest and support. Here you can find it:
    https://www.facebook.com/CII.Columbia
     
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  19. vli

    vli

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    Love this @Firestormm! :D :D
    @MeSci I just wanted to say I'm aware of your fears; I'm not oblivious to them. However I'm not up to scratch on the science frankly and I'm in no position to argue with you about whether the microbiome of a human could be successfully replicated in an animal (or if that work would even show anything). However I'm not sure but I think I pleaded to Simon and Sasha to answer you, and I think they did. I hope their replies were at least satisfactory to you.
     
  20. Simon

    Simon

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    Not at all. Remember, Ian Lipkin is part of the World Health Organisation global pandemic surveillance and action system. Pandemics don't wait for scientists to spend a couple of years figuring out what's going on: fast is the way he works.

    As far as the study goes, they already have a cohort lined up (from the original NIH/XMRV study) and a network of physicians ready to check the diagnosis of those patients, take and ship samples. His team have a lot of experience of the high-throughput sequencing approach required (Lipkin has done a lot to develop such tools himself), PCR assay development and antibody test development. He has over 60 people working for him at the Center for Infection and Immunity and can commit a lot of man/woman power to the project - and has done so already in the ME/CFS pathogen/immune study.

    So 'within a year' is not unusually fast by Ian Lipkin's standards. Probably the hardest and slowest part is assembling the diagnosed cohort and network of physicians needed (which is what held up the original XMRV study) - but that has already been done. The project is planned, cued up and ready to go - once the cash is there.
     
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