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!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
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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. Kate_UK

    Kate_UK Senior Member

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    how to do this?
    Izola likes this.
  2. Ember

    Ember Senior Member

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    This may be the one:
    beaker, Izola, Bob and 1 other person like this.
  3. Sasha

    Sasha Fine, thank you

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    Izola, Simon and aimossy like this.
  4. Wally

    Wally Senior Member

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    Not trying to rain on this parade of "happiness", but did anyone ask Columbia how the donation you make will flow through Columbia. In other words, how much of the donation goes to overhead and how much goes to the actual research? Also, does Columbia take a cut of the donation for a general Columbia University donation account.

    I went ahead and contacted Columbia to ask these questions for my own due diligence before making a donation and I will share this information here on the Forum unless someone else has already researched all of this. (@Simon - sorry if this was covered in the article you wrote - I have not had a chance to read it all the way through yet.)

    Wally
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  5. Simon

    Simon

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    Yes, we did ask this, partly prompted by your questions on another thread and the breakdown was given in the article. I do hope you were persuaded to donate by what CII told you.
    I would argue the high tech equipment maintenance costs (about $30k, I think) are actually a direct cost of the study, leaving "admin" which includes providing the building, heating and lab benches, general service costs amounting to around 9%. That struck me as fair enough.

    Feel free to publish the detail here (assuming it's the same one page breakdown I had) - I checked with Columbia and they were ok for it to go public (but my article was long enough without includig any more budget detail!).
    Last edited: Feb 11, 2014
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  6. Wally

    Wally Senior Member

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    @Simon - Thanks Simon. I will post if I am provided with any information that is different from what you were provided (which I doubt would happen). I do know that some organizations will take a large cut of any fundraising efforts directly for their general fund (which may be a separate cut over and above overhead costs) and only a portion of the funds raised go to the project the funds were raised for. This is something that people need to be aware of when getting involved with fundraising projects. (Like us lawyers like to say "the devil is in the details":devil:)

    I hope to be able to provide more information about the ins and outs of fundraising that might be important for our patient community to know before any commitments are made to a big fundraising event. Just juggling a lot on my plate right now and unfortunately all my plates are currently residing with me in my bed. :ill:
  7. Chris

    Chris Senior Member

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    I am happily in! Lipkin on ME fulfills my definition of a good cause--as did Maria's Rituxumab venture. I think we are going to have to get used to crowdfunding our research, after seeing where NIH puts there money. Just think how we would feel if Lipkin did find a large part of the answer, and the NIH had to deal with that finding. That would give me pleasure out of all proportion to the pain of giving up a couple of little things.
    Chris
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  8. Legendrew

    Legendrew Content team

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    You make a lot of good points regarding the potential implementation of an animal study as a part of this larger initiative and I just wanted to record my own opinion on the matter. I recently read a study regarding certain animal species (I believe elephants were one of them) which are born without an established microbiome and rectify this through consuming the feces of healthy adult animals, it sounds awfully similar a process to the fecal transplants discussed in this article so it's interesting to see as a presumably innate behavior exhibited in certain species. This really stands out to me as indicating just how important the microbiome may indeed be.

    We know that, in general, animal models have a lot of problems alongside their potential benefits. For quite a while it has been very popular to use animal models - usually mice - to try and simulate human diseases before testing any hypotheses the researchers may or may not have. The obvious problem this brings is that the disease they are studying is not actually the condition from which humans suffer but an analogue produced for the sole intention of being studied, this logically seems a little odd to understand as in many cases since we manufacture the disease using the knowledge we have so you'd think we stand to learn little about the condition other than the response the immune system that particular animal produces which while interesting is more often than not unrelatable to the human immune response.

    We do however stand to learn a lot about diseases in which the disease processes are very similar between the animal being studied and within humans. These tend to be diseases which effect bodily organs, tissues or reaction processes that have not changed much throughout evolution - good examples being diseases which affect the organs such as with heart disease, the glands such as hypo and hyperthyroidism and vital biological processes such as respiration and the many diseases which can cause problems here.

    As I see it this study is truly investigating two things, the gut microbiome and the immune response that changes in the biome can trigger. It has to be said that we know little about the microbiome overall, its importance is only very recently becoming clear, we do however know that the immune responses in many animals differ to those of humans in certain aspects so that could be a potential problem as this study progresses but it's very difficult to predict given that we know very little of how the gut microbiome and immune system interact with one another. The question then is are microbiomes in animals similar enough to humans to allow us to learn anything from this study and I think that with the little we know it's hard to say but it stands to reason that the gut microbiome is likely fairly unique to each animal, a logical assumption given their diets are very different, points which you have pricked up on and quite rightly so. I do however suspect that the basic mechanisms in place for the interaction between the microbiome and the immune system are likely to have remained a fairly similar process throughout evolution, given how accommodating the gut microbiome is to beneficial microbes I suspect there is a degree of co-evolution between the organism and the microbiome to allow the immune system to be more even more accommodating of these helpful microbes. I do however believe there must be a degree of allowing new microbes to grow in the microbiome as some of these could potentially confer advantages to the organism, whether that be allowing them to digest a previously undigestable food source or otherwise. This openess is something I suspect may lend itself to being quite a consistent feature in many organisms.

    While the likely difference in the gut microbiome and different functioning of the immune system seem to imply that the animals model is of little use in this case, I believe that we stand to learn a lot about the intermediate stage of the process; studying the mechanism of the interaction between the two distinct systems. If we can learn more about the processes as they are intended to occur, it makes it a lot easier to spot when something goes wrong as is being hypothesised by Lipkin.

    Overall I think this study is very ambitious in nature and we stand to learn a lot from it, not just about the potential importance of the microbiome in ME/CFS but how problems in the microbiome may cause a distinct form of disease. The animal model does have problems as they always tend to, but it seems to me that it plays a relatively small role in this study overall. From a personal standpoint I'm not yet convinced that this is where the true problem in ME/CFS lies, but I think it's certainly worth studying further and I couldn't think of many researchers better to do it than Prof. Lipkin.
    Last edited: Feb 10, 2014
  9. Lynne B

    Lynne B Senior Member

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    Hi, all. I've just donated from Australia. My very first symptoms were atypical gut problems, followed by all my other symptoms. I've just recently benefited from a course of Rifaxamin. At first I didn't think it had worked, but now, 6 months later, I'm finding I can eat lots of food I haven't been able to eat for 17 years—even garlic! So I think the gut is an important area to research. I'll donate again if it looks like getting up through crowd sourcing. Way to go!

    cheers, Lynne
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  10. Ruthie24

    Ruthie24 Senior Member

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    Donated. Seems like this research has great potential as a starting point not only for ME/CFS but for a lot of the other poorly defined, but presumed-to-be-autoimmune, illnesses that kind of look like ME/CFS (but aren't) and frequently seem to "travel along with" GI problems.

    I'm sure it's not going to be the answer to every question we have, nor define every subset. I'm sure there will be additional costs etc above the $1 million. The point is...we have a brilliant scientist who wants to do studies that are likely to give us some answers! Even if they're negative answers, they'll be answers. Hmmm $1 mil for Ian Lipkin's research or $1 mil for the NIH sponsored IOM project. Know where I'm putting my money and support. :)

    Thanks Simon and Vanessa for getting this going!:thumbsup:
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  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Did it! :)

    Sushi
  12. biophile

    biophile Places I'd rather be.

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    Sounds good, but, what happens to the money if the project fails to meet target? If I recall correctly, Kickstarter projects do not charge you unless the project meets the target. I know that may not be common practice for donations, but I am reluctant to make a relatively large donation without knowing what happens if it fails.
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  13. vli

    vli

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    @biophile , I am chasing this particular question--a very good one--up with Columbia since you and a few other patients have already raised it. Columbia knows I am trying to get a crowdfunding campaign going, which WILL allow donors to see how much of the target they've reached and to get their money back if it isn't reached etc., but the PR content team decided that @Simon should first get the article out there, so that we can get a sense of how many would be interested in a microbiome study and willing to donate. I also need lots of help should I launch a crowdfunding campaign because I'm just not strong enough, which is why the end of the article urges readers to join the crowdfunding group I started if you have experience and/or are willing to help--my only way of knowing if a campaign can even be launched.

    While I wait for Lipkin's office to answer this question, please know that they have assured me that if a campaign is launched, all gifts made at that link will be transferred to the crowdfunding campaign "pot".
    justinreilly, beaker, Bob and 4 others like this.
  14. acer2000

    acer2000 Senior Member

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    I think some crowd funding sites don't penalize you for not meeting the target, but I'll admit I'm not an expert.
    beaker and vli like this.
  15. Firestormm

    Firestormm Guest

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    Some more very welcome news:

    We heard last night, that Jen Brea from Canary in a Coal Mine has given her support to the project and is very willing to help where she can. This is just the kind of expertise needed and perhaps a further example of how we can all come together to make such research become a reality.

    Thanks Jen :balloons:
    Last edited: Feb 11, 2014
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  16. vli

    vli

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    Just in case this has been missed

    Following the requests of quite a number of members, I have made the crowdfunding group into a private one where I have been updating the group on the news about Jen Brea, for instance. Sorry if this creates inconvenience for some people but members have expressed a desire to throw ideas around but not to have them made public.

    Thanks a lot.
    Simon, anniekim and Firestormm like this.
  17. Kati

    Kati Patient in training

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    The down side to this crowdfunding efforts is that there is no 'thermometer'- we need to find a way to know how much we've raised so far. It motivates people to give and to ask others to give.
    Sasha likes this.
  18. Firestormm

    Firestormm Guest

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    The means of donating now, from the article above, Kati is an initial one. It simply allows folk to do something now if they wish to. Vanessa is going to regularly update the total raised by this method, and then hopefully we can launch a proper crowdsourcing effort on social media - with targets and more visible updates etc.

    You might like to consider joining the Group and share any ideas you might have. With Jen Brea now also on board and others with the expertise, I think the chances are good that we will see a more visible and global effort before too much time has passed.
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  19. vli

    vli

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    I agree @Kati --that was what I was trying to say (not very well) before your post. A proper crowdfunding page would have all those features we want--thermometer, with a more staggered approach perhaps where we try to reach the $1 mil goal in several stages, the first being for sample collection and the second for sequencing and analysis and so on--but the article's only been out a day and frankly, we did not know how much interest this project would attract! So again, if you would like to help with putting a campaign together (help that I desperately need!) please join: Lipkin's $1 million dollar appeal
    justinreilly, Sasha, anniekim and 2 others like this.
  20. Hope123

    Hope123 Senior Member

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    1) So far no great animal models have been developed for CFS. It would be great if one could be but not along the lines of what I've seen. A few studies have used rats forced to run or swim to replicate CFS but that model doesn't make sense to me. I and many others did not get sick merely by exercising or doing more activities. Otherwise, we'd lots more people sick. I think lazy people get ME/CFS too -- much like many other medical conditions.

    2) I'm glad Lipkin is investigating this but I'd like to hear more from him about why they think the microbiome is a cause. I've not heard a reason yet that makes a lot of sense to me other than statements like the gut makes up a huge amount of the immune system. That is true but so does the skin. It is a non-specific statement.

    I do believe that some subset of people do have the gut as a starting point (for example people who started their illness with an enterovirus infection) and others have the gut affected as part of their illness if not the starting point. However, I don't think this will be the origin for others. However, I don't mind being proven wrong at all.

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