1. Patients launch a $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!
Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Interview: Ian Lipkin’s Million Dollar Appeal for Microbiome Study

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 10, 2014.

  1. Sasha

    Sasha Fine, thank you

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    Great - I'll be donating some more this month.
    aimossy likes this.
  2. Firestormm

    Firestormm Senior Member

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    Edited my post above to include NIH article relating to the original Rheumatoid Arthritis study of fecal matter in humans, the discoveries made, and the subsequent testing in mice.
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Yes - unfortunately it has become a research norm that associations in humans are then tested on non-human animals to try to ascertain any direction of causality. The non-human models then turn out to be extremely misleading in relation to what happens in humans. They are therefore pointless, or worse. They frequently lead to the expenditure of massive sums of (often publicly-donated) money trying to extrapolate animal findings to humans, and end in failure, often causing harm to humans in the process, or at the very least bitter disappointment, as has repeatedly been the case in attempts to develop Alzheimer's drugs.

    My comment related to the study you cited above. I have already made it clear here and in numerous other threads - and my blog - that I consider the gut microbiome to be a very likely site for ME/CFS causation, and have also stated that I support Lipkin's (and others') human microbiome research, in humans.

    I believe that it is very important to stress the folly of animal models. Just like the pseudoscience that is widespread about our illness, the pseudoscience of animal 'models' has become widely accepted, and most people are not aware that it is pseudoscience.
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    From my blogpost linked to above:

    So, as I had guessed prior to seeing the article and associated paper posted in my blog, even healthy human microbiota do not perform normally in mice, so what is the sense of using mice to test abnormal human microbiota? The gut-immune connection is central to hypotheses of ME causation. I have reams of further info about gut-immune differences between species but haven't had time to edit it to put in my blog yet.

    I am just trying to help people save time, money, false hope and health damage from trusting non-human studies. It is a thankless and never-ending task, as almost everyone seems to trust this particular norm.
  5. Simon

    Simon

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    Turns out it's not just the NIH who aren't interested in ME/CFS, neither are the CDC according to their 2014 Financial plan: an increase of just 0.8% ($40k) to $5.4 million. Which frankly isn't anywhere near enough.

    I'm afraid that for now, it's down to us patients to do what we can if we want to see more research funded.
    Last edited: Mar 11, 2014
    vli, aimossy, Sasha and 2 others like this.
  6. vli

    vli

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    Ain't that the truth! :jaw-drop::eek:o_O
    Sasha, Simon and aimossy like this.
  7. Firestormm

    Firestormm Senior Member

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    Patient Power :D
    aimossy and Sasha like this.
  8. Bob

    Bob

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    Just an interesting little aside, for anyone interested in changing diet to change the gut microbiome:

    Gut Microbes Respond within Days to Major Diet Changes
    http://www.scientificamerican.com/article/gut-microbes-respond-within-days-major-diet-changes/

    There's a little bit more about it here:
    http://www.newscientist.com/article...arks-gut-bug-revolution-in-just-24-hours.html

    And this is the actual study:
    Diet rapidly and reproducibly alters the human gut microbiome
    David L, et al.
    Nature (2013) 10.1038/nature12820
    doi:10.1038/nature12820
    11 December 2013
    http://www.nature.com/nature/journal/vaop/ncurrent/full/nature12820.html
    Simon, Valentijn, Sasha and 1 other person like this.
  9. Firestormm

    Firestormm Senior Member

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    A series of videos about the microbiome from Canadian Digestive Health Foundation:

    [​IMG]

    We have 10 times more bacteria cells than human cells in our bodies. Bacteria living within our gastrointestinal tract makes up an environment known as our gut microbiome. The number and variety of bacteria residing in our gastrointestinal tract are as individual as we are and have an immense influence on our health. The CDHF is embarking on a journey to better understand the microbiome and its impact on human health. We invite you to join us on this exciting journey of discovery.

    How We Communicate with Our Microbiota and How It Communicates with Us

    Dr. Karen Madsen, Professor of Medicine at the University of Alberta and Co-director of the "Center of Excellence for Gastrointestinal Inflammation and Immunity Research (CEGIIR) provides a fascinating overview to help us gain an appreciation of how microbial metabolism can influence gut health, understand how gut microbes can modulate immune function and, recognize the different ways in which microbes and the host interact with each other.

    Watch Video

    IBS and the Microbiota

    Gastroenterologist and Associate Dean for Research at McMaster University, Dr. Steve Collins, provides insightful fact to help us understand current concepts of IBS, the interactions between the intestinal microbiome and the gut-brain axis, and microbiome-directed therapies for IBS.

    Watch Video

    Microbiota 101 : Microbes and the Human GI Tract


    This presentation from Dr. Richard Fedorak, Professor of Medicine, University of Alberta and President, Canadian Digestive Health Foundation helps us understand the development of the human microbiome, understand changes in the human microbiome in human disease, understand the role or probiotics in the treatment of human diseases, and learn how microbes can become biomarkers for us in the future.

    Watch Video

    Microbiota in Health and Disease

    In this presentation, Dr. John Marshall, Professor of Medicine at McMaster University and Chief of Service for Gastroenterology at Hamilton Health Sciences in Hamilton discusses the long term sequelae of enteric infection, links among gut flora, IBS and IBD how changes in the microbiome can both induce and heal C. Difficile infection.

    Watch Video

    Your Microbiome - Good or Bad Gut Bacteria?

    Listen to a fascinating presentation by Dr. Richard Fedorak, CDHF President and Professor of Medicine at the University of Alberta, Edmonton, AB who introduces you to the marvellous world of our gut microbiota.

    Watch Video

    Understanding and Harnessing the Power of Probiotics

    There is much buzz out there about probiotics these days. These friendly bacteria can be used to prevent and treat disease -- particularly in our gut. Probiotics stimulate the immune system and displace harmful bacteria that might otherwise cause disease. Specific digestive benefits of probiotics can include: reducing the severity and duration of diarrhea, treating constipation, improving the symptoms of, preventing ulcerative colitis from relapsing, counteracting lactose intolerance and more.

    Watch Video

    Understanding and Fostering a Good Gut Environment, Richard Fedorak, MD FRCPC FRCP(London) FRSC

    LEARNING OBJECTIVES:
    • To learn what your microbiome is and how it originates
    • To understand how your microbiome affects your body
    • To learn how you can change your microbiome with probiotics and prebiotics
    Watch Video
    Last edited: Mar 13, 2014
    aimossy and Simon like this.
  10. Jarod

    Jarod Senior Member

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    planet earth
    @vli and @Wally

    Thank you for the replys.

    Hope the project goes well.

    I finally get the bigger picture and understand the general direction is to improve humanity as a whole.

    Peace.
    aimossy and Simon like this.
  11. Sasha

    Sasha Fine, thank you

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    BTW, I just managed to post in the non-FB (I think) bit of the comments section of that Tuller piece by replying to someone else's comment, rather than trying to make an original comment.

    Argh, social media! But it's clearly possible - please do post on there to say you've donated, if you have. It really does encourage other people - plenty of research to show that. :)
    vli likes this.
  12. vli

    vli

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    Sasha, I'm afraid I still can't see either of your comments. I can't see yours in the "FB Conversations" section, nor in the lower section either.

    Is anyone else having this problem or is it just me?

    ETA: attached is a screencap. Unfortunately I do not see Sasha's comment anywhere, even when I scroll down to the bottom!

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  13. Sasha

    Sasha Fine, thank you

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    That's weird - someone else has thumbs-upped so at least one other person can see me! Could this be a geographic thing? I'm posting from the UK.
  14. Sasha

    Sasha Fine, thank you

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    Plus I just refreshed that page and I can't see all that stuff from Sally Keela Too Burch that's on your screenshot. I just don't get it.

    Oh well, we can but post and hope!
  15. shahida

    shahida

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    hi, just wanted to make a point about funding. I think there are so many patients out there who just don't know about this- I've only found out about it because I've come onto this site. in my local support group there are over 100 people but they just don't have the energy to find this stuff out. Just think of how many support groups there are in each country and then all over the world-I bet the majority aren't even aware of this funding drive. I don't know if such a thing already exists but how about establishing email contacts with as many local groups as possible to filter through such such news? many local groups produce newsletters too which could feature it. there's always the risk of donation fatigue but the flip side is more people know=more money. And I agree it's a scandal our governments aren't helping more.
    aimossy, RL_sparky, acer2000 and 3 others like this.
  16. acer2000

    acer2000 Senior Member

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    Thats a great idea. Does anyone have contacts at various support groups?
    shahida likes this.
  17. Firestormm

    Firestormm Senior Member

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    We have compiled a dataset of the organisations and support groups that we could locate in many countries around the world, and will be planning a campaign of awareness that tries to establish contact with them, and raise awareness of the proposed study and need for donations.

    But, we could do with your suggestions - we might have missed some! I think this is especially true of America - the local 'on the ground' networks especially. The UK is especially well organised in this respect, and by comparison: but while we will try and produce translations - we do aim to target the English-speaking countries initially: and America is our main target in this regard.

    So. If you guys do have some specific suggestions for 'grassroots' support groups and/or local networks - then please let us know.

    You can contact the campaign team via our email (from the website http://www.microbediscovery.org/contact/) info@microbediscovery.org with your suggestions. We would need the name, a designation contact perhaps, an email and/or Facebook address. As much information as you can provide.

    Or if you feel able to take along the information to a local support group meeting, we will shortly have available 'support packs' that will include flyers, posters, and other campaign materials, for distribution.

    We said from the start that this campaign was in large part about connecting with patients across many countries and trying to gain affordable donations from a wide pool of donors. The more people we can reach in this way - hopefully the better for the campaign :)
    shahida and aimossy like this.
  18. shahida

    shahida

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    that sounds great-but it isn't something I've heard of amongst my local group. I know the group Action for Me has a list of all/majority of support groups in the UK- this could potentially be a resource? I wonder how many of these names you have? It's fantastic that a network is established that could help with ME related issues eg.to add votes to Newry & Mourne's campaign to adopt the CCC in Northern Ireland-yet I only found out about this as I happened to come across it in a post. If this network was one where groups such as this with a current campaign could tap into they'd have all the votes they'd need by now rather than hoping more people just 'come across' it. They do appear to be a particularly active group so it seems that both a national and international network of ME groups is yet to realise its full potential.
  19. Tuha

    Tuha Senior Member

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    New total update:
    As of today, $57,189 (£34,075 or EUR41,692) has been raised from 362 donations. Thank you to every one of you for your continued support for this project.

    Please help us spread the word by inviting your friends to 'like' the page https://www.facebook.com/microbediscovery
    , by sharing our website www.microbediscovery.org which contains information about the study, the scientists (including Dr. Ian Lipkin) or by following us on Twitter: www.twitter.com/microbeproject and by donating directly to Columbia University at www.bit.ly/DonateToDrLipkin

    Together we can do it!
    aimossy, beaker, Sasha and 2 others like this.

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