1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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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. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Having studied and worked in this area of science for a number of years (species differences in relation to animal 'models') I can tell you with certainty that there are reams of papers that discuss crucial differences that invalidate the entire 'animal model' paradigm. It's unfortunate that a large report I produced for a client in 2010 was not published. I am working on a blogpost specifically relating to the type of animal study proposed here, but it will take a while.

    In the meantime here is a small extract from my report that illustrates the general problems and also refers to major heart differences:

    The relevant references are:

    Knight, A. (2008) Reviews of Animal Experiments Demonstrate Poor Contributions Toward Human Healthcare, Reviews on Recent Clinical Trials, , vol. 3, No. 2, pp. 89-96

    Langley, G. (2009) The validity of animal experiments in medical research/validité de l’expérimentation animale en recherche médicale, Revue Semestrielle de Droit Animalier, vol. 1, pp. 161-168

    Perel, P., Roberts, I., Sena, E., Wheble, P., Briscoe, C., Sandercock, P., Macleod, M., Mignini, L.E., Jayaram, P. and Khan, K.S. (2006) Comparison of treatment effects between animal experiments and clinical trials: systematic review, British Medical Journal, 334 (7586): 197, online at http://www.bmj.com/cgi/content/full/334/7586/197

    ten Tusscher, K., Department of Theoretical Biology/Bioinformatics, Faculty of Biology, Utrecht University (2007) Ventricular Fibrillation in the Human Heart. Why is it different from Fibrillation in the Dog and Pig Heart? Video lecture, text, diagrams and slides online at

    http://videolectures.net/eccs07_tusscher_vfh/


    I haven't checked the URLs - they may no longer work.

    A 50% predictability rate means that one may as well toss a coin.
    biophile likes this.
  2. aimossy

    aimossy Senior Member

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    Just uneducated thoughts here.
    Part of me wonders about kickstarter because they take a percentage and also there is a time limit....money is lost for the project if it doesn't succeed and we need to make this happen. Well in my view:)
    I like the UK invest in ME rituximab face book page because it keeps you updated, plus there is no set time limit so money is not lost. It"s more like a goal to achieve.

    Maybe I like the idea of cutting out the middle steps.;)
    Anyway, in saying that it might make things slower. I would personally like to see it well plugged and even possibly by ME organisations. New research may publish shortly which could spur things on brightly as well.
    Lots of factors to take into account.

    I would love to help out @vli but lack the skills/knowledge you probably need for your group.o_O:)
    Izola, vli, Firestormm and 1 other person like this.
  3. anniekim

    anniekim Senior Member

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    Can I just ask was it Lipkin himself who said that depending on what the study finds treatments may involve antibiotics, probiotics and restricted diets? Many thanks
    vli likes this.
  4. Jo Best

    Jo Best

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    This is excellent news, thanks to all involved! The lack of government initiative and funding is the reason we patients launched the "Let's do it for ME!" campaign in July 2011 in support of the work of Invest in ME charity and to raise funds for their strategy for translational biomedical ME research. The first £100k raised has fully funded the foundation research project on the gut microbiome in ME at top UK University of East Anglia/Norwich Research Park, where the Institute of Food Research and The Genome Analysis Centre are also based. Here's the link to the latest update and FAQs about the UK gut microbiota: http://www.investinme.org/LDR%20newslet%201312-01.htm
    Professor Simon Carding will be speaking about the UK gut microbiota research at the 2014 Invest in ME conference, and Dr. Mady Hornig will be speaking about pathogen discovery in ME. Here's the link to the agenda so far: http://www.investinme.eu/agenda.html
    Izola, Ruthie24, aimossy and 4 others like this.
  5. Forbin

    Forbin Forbin

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    If you watch the last 8 minutes or so of the lecture Dr. Lipkin gave at Oxford last year (originally posted on this thread by Simon in post #24) you can see that Lipkin's interest in the microbiome / microflora and the immune response to infection is not limited to ME/CFS. In the close of his lecture, he discusses immune response and micobiota in the context of other diseases. Jump ahead to 48:25.

    Jo Best, Sasha, Simon and 1 other person like this.
  6. Simon

    Simon

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    I agree that the microbiome is unlikely to account for everyone's illness - indeed I doubt that any one thing could account for everyone's illness and I suspect even ME (let alone CFS) will turn out to be multiple diseases.

    While there is certainly a degree of non-specificity in this approach - 'the immune system is activated, so who or what pulled the trigger?' is part of the rationale,I think it's worth pointing out that the gut microbiome is a much better candidate than, say. the skin. So it's not quite a case of 'could be this, could be anything'. here's a bit more info:
    - there are more microbes in the gut than anywhere else in the body, by a trillion or so.
    - there are way more immune cells in the gut than anywhere else in the body
    - the gut has - has to have - a permeable lining to take food on board, making the contact between immune system and gut particularly itimate.
    - there is an intimate and complex relationship between the microbiome and the gut immune system that is only beginning to be understood. For example, in gnobiotic mice (raised in sterile conditions, with no microbiome as a result), the immune system doesn't develop properly - in particular it doesn't regulate itself properly and is prone to inflammation. Interesting article on this from Science Daily
    - and of course many people with ME/CFS have gut problems such as food sensitivity.

    The gut microbiome is an exploding area of research and being linked to a number of diseases. This blog has more information Gut bugs misbehaving? The microbiome and ME/CFS

    Yes, that's what Lipkin said - the antibiotics were as in 'antibiotics followed by probiotics', since antibiotics will wipe out much of the microbiome. He also mentioned faecal transplants were a possiblility - certainly they were used very successfully to treat drug-resistant C difficile infections. But exactly what treatment is appropriate (if any) will depend on the findings of this research.
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  7. Sasha

    Sasha Fine, thank you

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    Hi Legendrew - very interesting post. Just to be clear, the animal model plays no role at all in the study we're being asked to fund. Lipkin said that an animal model is one option that he might consider, depending on the results of the study. And, depending on which, if any, bugs are associated with ME, it might make more sense to go straight to therapeutics - the animal model stuff might never happen.
    Izola, aimossy and Firestormm like this.
  8. Firestormm

    Firestormm Guest

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    Forbes - cool lecture wasn't it? I thought when I watched it 'where the heck is he going with it?' expecting more of a science lecture, but I think he made the points well, and I have to mention to @Bob because I forgot to (when Simon drew my attention to the lecture whilst working on the article), that Lipkin also uses the Star Trek scanner as an example of what might be possible in the very near future! :)

    But yeah, I think focusing on the last section of the presentation is probably best for relevancy on this thread. Interesting when you stop and think about the things we eat - not that they might be carrying some infection per se - but in the vast array of good and bad that could be present in our guts. I'd be interested to learn - if nothing else - what differences and similarities might be found in comparison with the controls.

    It's like Star Trek again: ...to boldly go where no one has gone before... :thumbsup:
    Izola, aimossy, Simon and 1 other person like this.
  9. Jo Best

    Jo Best

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    Hi Sasha, I'm new to the forum, so I hope I'm doing this right :) I'm very pleased to let you know that, far from raising funds before deciding what to spend it on, the fundraising for the Invest in ME/UEA gut microbiome study was the first of such campaigns to set a target amount for a specified research project and was initiated by patients. This was a new approach to fundraising for ME research and these factors contribute to why it took almost two years to raise the initial £100k. The Let's do it for ME! campaign was launched in July 2011 by three people with severe ME to a) help raise awareness of Invest in ME's proposal to establish a centre of excellence for translational biomedical ME research: the first of its kind in UK/Europe and b) raise funds for the research. We set the initial fundraising target at £100k to fully fund the foundation project of the research strategy - the gut microbiome study, which Professor Simon Carding will speak about at the 2014 IiME conference (IIMEC9). Invest in ME also produced their gut study posters to help advertise this. We formed a core online planning group to develop the campaign and now have a global community of supporters and we proactively support other ME advocacy and fundraising campaigns and causes. IiME's announcement at their conference last May (IIMEC8) that the initial fundraising target had been acheived was a great boost to get us up and running (so to speak!) with phase two of the fundraising: for the UK rituximab study being organised by Invest in ME with the Clinical Trials Unit at University College London :)
    Izola, vli, aimossy and 5 others like this.
  10. Simon

    Simon

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    Things seemed to have calmed down a fraction after a manic 24 hours or so, a chance to say thanks to everyone who is making this happen

    Rolls of honour

    Donors declared on this thread
    Also @Wally and @biophile say they are considering but need a bit more info.

    Initial Team
    Vanessa Li (@vli) started this whole thing off by contacting Ian Lipkin's team, which led to the offer of the interview. She, @Firestormm and @Sasha spent countless hours over the last month discussing the research project, how best to explain it, getting the extra info we needed from Columbia, discussing timing and crowdsourcing plans, and more (especially editing - thanks Fire). It was an unbelievable amount of work for everyone, and sometimes it seemed we'd never get there. Thank you all - esp Vanessa without whom nothing would have happened and who has pushed on despite very poor health.

    The fundraising group: Lipkin's $1 million dollar appeal
    Currently has 25 members signed up. I think this group is essential if we are to hit the million dollar target. Thanks to all who have joined and still room for more!

    Everyone on this thread
    Wow, 1,764 views, 68 comments and 206 'Recommended' on facebook - zero is the normal number for recommendations of the thread (as opposed to the blog itself).
    upload_2014-2-11_17-24-51.png

    Dr Ian Lipkin
    Well, obviously for the study, but also for being generous with his time for the interview: nearly thre-quarters of an hour with someone who clearly had never interviewed anyone before :whistle:. Also to Dr Mady Hornig who will be Principal Investigator on the project and has done much of the planning work.

    Thank you - and take a bow all
    Last edited: Feb 11, 2014
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  11. Sasha

    Sasha Fine, thank you

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    Thanks, @Simon - actually I don't recall doing much in the 'making it happen' stakes but I've donated. :)

    Thanks to you (you did't thank yourself!) for all you've done on this project - you're a star. :thumbsup:
    SOC, aimossy, Simon and 2 others like this.
  12. Sasha

    Sasha Fine, thank you

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    Thanks, Jo - good to know. :)
  13. Firestormm

    Firestormm Guest

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    Oh! So that's what that means at the bottom of this page! Recommend to Facebook. Oh very clever.... I am such a plonker. Never noticed it before :oops: :D
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  14. Daisymay

    Daisymay Senior Member

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    This is brilliant, thanks so much to everyone involved, donated and will pass on. I agree with others it would be good if we could see a thermometer to see the money coming in.
    Izola, vli, Firestormm and 3 others like this.
  15. 5150

    5150 Senior Member

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    The AIDS community needs to step forward on this project! When your butts were on the line, many non-AIDS people within the community of Caring People sprang forward to your assistance. I was one of them, and my entire family has contributed to Aids treatment since the beginning: 1982.

    Now, it would say "Thank You" to all those who aided your cause, by all of you paying it forward to our millions who now are suffering from ME. God knows, we need the help.

    It's a challenge you all should warmly embrace. The opportunity to be of service is a blessing.
    Izola, Sasha, Jo Best and 1 other person like this.
  16. 5150

    5150 Senior Member

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    The Opportunity to be of Service is, A Blessing.
    Izola likes this.
  17. vli

    vli

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    @Simon , thou art too humble... obviously the two people I owe the greatest thanks to are yourself and @Firestormm , about whom I can say the same thing--without either of you this also would not have happened! Shouts out also go to @Sasha , @Legendrew, @Mark and any other member of the Content Team I might've missed.

    Thought I would take this opportunity to report that Columbia has informed me that, from 10/2013-2/2014, they have received 14 gifts for ME/CFS research totaling $2,935 :balloons::balloons::thumbsup: Unfortunately I do not know how much of that total went to the microbiome study, and I strongly suspect that not all donations given after Simon's article came out have been processed (seeing that I only sent Columbia this enquiry yesterday evening). If you would like me to find out please tag me in a reply and I will ask how much of that total went to the microbiome study specifically.

    :woot: THANK YOU EVERYONE!!! :thumbsup:
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  18. vli

    vli

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    Just wanted to add that the $2935 figure is definitely NOT accurate (it has to be more than that amount) because Columbia counts 14 gifts and Simon counted 14 declared donors on this thread--and I know for a fact there exists at least a handful of folk who gave but who did not declare it! This is where a crowdfunding thermometer would be most helpful--available if we put a crowdfunding campaign together :)
    Sasha, Simon, aimossy and 1 other person like this.
  19. Esther12

    Esther12 Senior Member

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    I'm going to have to wait a month... I've not donated anything yet!
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  20. dannybex

    dannybex Senior Member

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    I have great respect for Dr. Myhill, but the notion that there is or should be 'one' diet for all people, sick or not, just defies common sense. Increased levels of carbs are recommended by many if one has cortisol issues…which many of us have.
    anniekim and Kati like this.

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