1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
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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. aimossy

    aimossy Senior Member

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    I really like this too :lol:!!
     
    Ritto and biophile like this.
  2. SOC

    SOC Senior Member

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    Million Dollar Bug Hunt is cute, but I'm not sure cute is what we should be shooting for if we want high money donors. Perhaps we should aim for something more professional or serious-minded and save the fun, cute name for using among ourselves.
     
  3. Sean

    Sean Senior Member

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    Fair point. Have to be so careful with this naming thing. Even a slightly imperfect choice can be bad news, and very difficult to fix, post-hoc.
     
    Simon, aimossy, SOC and 1 other person like this.
  4. Sean

    Sean Senior Member

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    "Time to give a buck".

    The fun we could have with words like buck and ME, etc. :) :whistle:

    If only this were just a light comedy, instead of a serious farce. :grumpy:
     
    Simon, biophile, Firestormm and 2 others like this.
  5. rosie26

    rosie26 Senior Member

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    Is this too long.

    "Give your heart out to ME - Lipkin's 1 Million Microbiome Study 2014"
     
  6. Forbin

    Forbin Forbin

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    Well, all I've got is the somewhat emphatic... "MicrobioME NOW" ...which I think of as a way of saying we are not going to wait for the NIH.
     
    Last edited: Feb 15, 2014
    anniekim, Ruthie24, Simon and 5 others like this.
  7. Jarod

    Jarod Senior Member

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    I am also a little confused as to why you think any results that Lipkin sees researching the microbiome would not be "tangible and usable" even if other points that you made are valid; but perhaps I'll let others jump in here.

    Hiya,

    Let me just respond to this last to the group "as a whole" since it gets right to the heart of the problem.

    CFS community has been doing all this academic stuff for decades and NONE of it has produced anything that is useful for the community.

    I'm in favor of academic research and everything, but it never seems to end up leading to anything tangible.

    If I am going to fund something, at the end I want it to produce something tangible that will help me and other ill people dying without one peep out of anybody except the psychiatrists making it look like I'm crazy, lazy, mentally ill, or whatever other nonsense.

    Crowd funding is a a unique opportunity to hold somebody accountable for a change. Set up requirements and milestones to clearly define want to deliverables are going to be. Demonstrate they can deliver something, and have deliverables each time a check is released from escrow. That is how stuff works in the business world outside academia. It's called project management.

    Run the dang thing like a venture capital firm.

    The most urgent need to is fund education and testing so people don't die or commit suicide like "hubcap halo" did when social security cut him off because the paper pushers in govenment have no clue what our illness is due to the misinformation in the media, hollywood, and government. I've been through those reviews and it is a joke.

    Number two is to provide treatment. Test the best medications and glutathione building techniques and get those working now.


    What a blown opportunity.

    Doing the same thing over and over again isn't going to move the ball.

    Lipkin has plenty of starpower and can raise money from many other places the way I see it.
     
    Last edited: Feb 15, 2014
    Bob likes this.
  8. Sasha

    Sasha Fine, thank you

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  9. Jarod

    Jarod Senior Member

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    I'll simplify it a bit more.

    Government, universities, and big pharma have NOT been able to make progress for decades.

    Crowd funding can make it possible to change this. The way to do that is to fund an outsider. People are too divided and the potential leaders on the outside can't get the traction it seems.
     
  10. vli

    vli

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    I'm sorry, @Jarod, but you haven't quite addressed my reply to your reply.

    I can put those points in bold if you like.
    It appears you have just contradicted yourself in two consecutive paragraphs.

    In addition, I'd like to ask:

    What qualifies as "academic stuff"? Does De Meirleir's work on HERVs, Chia's work on enteroviruses or Dr Peterson's work on HHV-6 qualify? If so, I think you can find MANY patients on PR alone who will testify to such "academic stuff" producing a tangible effect on their treatment options; perhaps a forum search on "KDM (De Meirleir)", "John Chia" or "Daniel Peterson" will help?

    Perhaps you did not read Dr Lipkin's quote here and I will let him speak for himself:
    If you have experience in this arena, frankly our project IS indeed in dire need of someone with that expertise, and we would be more grateful than anything for such help because in the end we're just a bunch of sick folk trying to help each other. We'd love for such expertise to come in.
    Can you please specify to educate WHAT and to test WHAT?

    Again, please specify WHAT of the best medications you are talking about. If you mean drugs like Rituximab or Ampligen, well I'm sure you already know about the UK and Norwegian campaigns for the former, and advocates like Mary Schweitzer and others have been bravely pushing for approval of the latter (which I've also tried, by the way... and Valcyte/Vistide? Oh yeah tried those, too. Still sick.)
    I'm not sure exactly what opportunity of yours I've blown here because, like I said, neither Lipkin nor anyone else here is preventing other things from being tested/funded. Please specify.
    Again:
    .
     
    Last edited: Feb 15, 2014
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  11. Wally

    Wally Senior Member

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    @Jarod - I believe that some of the items on your list are already on the research project list that the OMNI-MERIT Group has developed. I believe they have also tried out crowd source funding for one of their projects. If I remember correctly, they are also trying to address some of their research projects toward nutritional treatments and other medications/supplements that while not a cure for this illness may provide much needed symptom relief for patients, while they also hunt for answers to solve this illness.

    There may not be answers to all the concerns you have, but it seems that some of your concerns may already be in the pipeline to be addressed. Perhaps because organizations like the Open Medicine Institute and others are fairly new, there has not been a lot of information available about how they are going about tackling research projects, including raising funds. Maybe this Forum or other forums, bloggers etc... could interview the Open Medicine Foundation and its founder, Dr. Kogelnik, as was done by Simon McGrath in his interview with Dr. Lipkin. This might help patients understand the different type of research projects that have been proposed by researchers, as well as to highlight those projects that are currently looking for funding. Maybe what is needed is a series of interviews with different researchers, as well as those who are handling the donation side of the project. I do realize this takes some time and effort for such articles to be generated, but it may be the most efficient use of time and energy to flush out all of the questions that are bubbling up around this fundraising topic

    It is my understanding that some of the fundraising questions about Dr. Lipkin's microbiome project could be reviewed in light of how Rituxan/Ritiuximab funding raising project was handled in England and how the Open Medicine Institute handles donations that come in to fund either the Institute, the Clinic, the Foundation and/or individual research projects.

    I think it also important to understand that a large project like what is envisioned by Dr. Lipkin will probably have a lot of difficulty being funded by just individual patient contributions. One million dollars it a lot of money to raise even if using crowd source funding. Could it be done? Perhaps, but it is more likely that the funds will need to come from several sources. Therefore, it is important to understand how your donation will be handled if it will be hanging out while other funds are being raised - how long will the donations have to sit while additional funds are being raised? Where will the funds go if the project cannot be fully funded? I believe V1i is working to get some of these answers and for some people it may be enough to want to make a donation right now without having all the details hammered out. But for others it may be better to wait until all their questions are answered and they are comfortable with where their donation will go and how it will be accounted for.

    For those who want to take action now with Lipkin's micobiome study, Columbia has set up an account that is earmarked for CFS research. The Open Medicine Foundation has a list of projects. Dr. Enlander has a project out of Mt. Sinai in New York that is looking for donations, and there are projects in the pipeline in Australia and Europe. Perhaps you do not like any of them, then don't donate at this time. Making a donation is really a personal choice, but I think you have raised some really good points about fundraising for research projects in general.

    Personally, I think it the responsibility of the researchers and their respective institutions to do a much better job at publicly addressing these questions/concerns upfront when asking for donations from a patient population that is quite ill and may be both cognitively and financially challenged.

    @V1i - Thank you for getting the discussion started about fundraising. I know that you are not well yourself and it can be overwhelming taking on any project for our patient community. Just hope you don't feel like you are under attack with all the questions and ideas people have raised. Your idea is a good one and you are right that you will need help to figure this out. But I believe the help you may be seeking might first need to be come from those who are holding their hand out to the patient community.
     
    MeSci likes this.
  12. Sasha

    Sasha Fine, thank you

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    Et voila:

    http://forums.phoenixrising.me/inde...itute-big-plans-and-a-sense-of-urgency.24043/

    I just got in my time machine and did that for you, Wally! :)
     
    Simon, MeSci, aimossy and 2 others like this.
  13. Wally

    Wally Senior Member

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  14. Sasha

    Sasha Fine, thank you

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    Ah, flares! Not much fun.

    Here's our articles archive in case you find it easier than looking back over our front page and fancied doing some back-reading:

    http://forums.phoenixrising.me/index.php?forums/phoenix-rising-articles.18/

    though it's not in date order - just in the order of when someone last posted a comment on any of them.
     
  15. Firestormm

    Firestormm Guest

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    You can use the search function, by category, on the Home/Blog Page as well should you want to check back-copies :)
     
    Simon and Sasha like this.
  16. Womble

    Womble

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    If microbiomes are to blame, what sort of treatments would be indicated?
     
    vli likes this.
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    IMO the first thing to try for gut dysbiosis is a change of diet. A lot of us discuss diet and supplements for healing leaky gut in this forum.

    This paper, which I have only glanced through, discusses effects of diet on the microbiome.
     
  18. Sasha

    Sasha Fine, thank you

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    Hi Womble - it says in the article (which is substantial so I'm not surprised you overlooked it!):

    If there is evidence of a causal role, Lipkin says they would look to establish clinical trials of treatments that could include probiotics, antibiotics followed by prebiotics, restriction diets and possibly even faecal transplants. He believes that there would not be a single microbiome cause of the illness, but different types – potentially fungal, bacterial and viral problems causing three separate types of immune dysfunction.​
     
  19. Kati

    Kati Patient in training

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    I bet HIV would not get better from diet changes only, even if they too have gut dysbiosis.
    The gut problems are in my opinion just another symptom of ME and results from a very dysfunctional immune system. While I do not oppose to funding a microbiome study, I believe that multi-system, computational biology research will be able to connect the dots and not just a study of fecal matter.
     
    SOC and Wally like this.
  20. Ember

    Ember Senior Member

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    But as Dr. Lipkin says, "There are at least one trillion bugs in the gut microbiome – and there are more immune cells in the gut than anywhere else: it’s a great place to hunt for bugs that might be triggering immune activation."
     
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