Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Research in Canada

Discussion in 'Fundraising' started by May12th, Aug 21, 2014.

  1. May12th

    May12th

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    Research has been identified as something patients would support in the upcoming Canadian Aviva contest. So we can write a proposal, we need to know specifically what research you’d want to see done. It could be a new study or validation of an existing study. Can you list 5-10 projects that would be good to do? (eg rituximab ME clinical trial, Japaneseneuroinflammation paper ).

    Also, if you have any other ideas that we could fund raise for in this contest, please let me know.
    Thanks
     
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  2. Bob

    Bob

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    How much is it possible to win in the Aviva contest?

    Regarding potential research projects to fund, two things spring to my mind...

    1. Getting Dr Chia's entero-virus (in the gut lining) research validated by another researcher.

    2. Getting funding to test Dr Michael VanElzakker's vagus nerve theory (if I'm right in thinking that he came up with the theory.) But I don't know how Dr Michael VanElzakker is progressing with his research, or whether he has managed to attract any funding. The last I read about it was that he was struggling with funding (as all CFS researchers do) but that a well known CFS clinician (I can't remember who) might have approached him with a view to collaborating to do some testing. I imagine that it will take a lot of research to fully test the vagus nerve theory so I'm certain they'd very much welcome extra funding.
     
    Last edited: Aug 21, 2014
  3. Aileen

    Aileen Senior Member

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    Are there any researchers in Canada who want to do some research? Has anyone approached any of our ME organizations, either the National ME/FM Action Network or a provincial group? Is anyone part of the international collaboration groups?
     
  4. Aileen

    Aileen Senior Member

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    What about a study on the microbiome? A lot of us have gut issues and food problems. I have some info from a study that the Microbiome Centre (or whatever it is called) in London, Ont. has done but can't find it ... I am looking. Also what about U of Guelph. They are heavily into that area.
     
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  5. Bob

    Bob

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    There are two gut microbiome studies seeking donations.
    1. Dr Lipkin's study in the US:
    www.microbediscovery.org/
    2. Invest in ME's study in the UK:
    www.investinme.org/LDR%20UK%20Gut%20Microbiota.htm
     
  6. May12th

    May12th

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    Max to be won is $100,000 and the money has to be spent in Canada.
    This is being done for the National ME/FM Action Network and we plan to talk to doctors in Canada.
    Its the patients that have to do the voting so it ideally should be something they perceived to be important enough that they'll spend the time to vote daily.
     
    Bob likes this.
  7. Bob

    Bob

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    Ah, OK, most of my comments are probably irrelevant then. Thanks for the clarification.
     
  8. Aileen

    Aileen Senior Member

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    @May12th @Kina
    One thing we desperately need is a biomarker, actually biomarkers plural, as we know this is more than one illness. I have an idea ... well, in a general sort of way.

    Yes, we'll still figure out a project to vote on. That is what the Aviva Contest is about. But I think we can also use this contest in a different, additional, way.

    What if the National ME/FM Action Network (ME/FM Network for short) were to use this as an opportunity to introduce itself, and our illness, to some of the new "omics" organizations? Genomics and the related fields it has spawned such as proteomics, metabolomics, microbiome etc.
    For example, "Hi we are the ME/FM Network, this is who our org represents, we desperately need to find a biomarker for our illnesses, how can you help us? We are entering a contest, is there a project you could do for us?"

    What organizations? In my research as of late I have stumbled across the following. I didn't know these existed. They are Names followed by [links]:

    Genome Canada [here]
    6 regional/provincial Genome Centres [BC], [Alta], [Praire], [Ont], [Que],[Atlantic]
    UVic Genome BC Protein Centre [here]
    The Metabolomics Innovation Centre [here]
     
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  9. shannah

    shannah Senior Member

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    There's Patrick McGowan, Canadian, doing genomics research on ME/CFS in Toronto. He gave a presentation on his latest work at CAA webinar today.
     
  10. aimossy

    aimossy Senior Member

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    Metabolome and Proteomics analysis please :)
    maybe blood gasses?
     
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  11. Aileen

    Aileen Senior Member

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    NK function studies. Can we even get these in Canada?
     
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  12. May12th

    May12th

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    Can you expand on this? I'm not sure what your asking for. Thanks
     
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  13. May12th

    May12th

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    Plan to talk to him.
     
  14. May12th

    May12th

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    We want to do more and MEFMACTION will be attending a CIHR (Canadian Institues of Health Research) meeting in the fall. They'll have our wish list.
     
  15. Mij

    Mij Senior Member

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    When I asked the virologist about NK function tests he looked at me as though I was speaking a foreign language.
     
  16. Aileen

    Aileen Senior Member

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    @May12th By NK cell function studies, I am referring to the ones Dr. Nancy Klimas does. It shows how the cells are actually functioning (or not). You may have the appropriate number of NK cells but if they aren't doing much or are doing things they shouldn't, then that points to a problem.
     
  17. Aileen

    Aileen Senior Member

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    Great to hear. :thumbsup: It is important to do more than give someone a wish list though. If Ian Lipkin can't get the US equivalent to fund his study our wishlist will go nowhere!

    What I think is critical is that the National ME/FM Action Network make contact with individual researchers at the different organizations, such as the ones I've listed above. Only by understanding exactly what kind of research each does and having a personal connection with someone will anything actually get accomplished.

    As @aimossy suggested, we need someone to look into proteins and other metabolites. We obviously have places that do this. We now have to sit down and learn what each other needs and has to offer, then figure out a mutually beneficial goal. These are relatively new orgs looking to make a mark and many doctors and scientists don't even understand what they do yet. Now is the time to get their attention, before everyone else starts beating a path to their door.
     
  18. May12th

    May12th

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    We're making progress on this and have submitted our entry to try to win $100,000 in the Aviva contest. Its www.avivacommunityfund.org/ideas/acf19712. Were still talking with the researchers to finalize the exact project.
    I hope you'll support us by voting daily from noon Sept 29 EST to Oct 13th noon. If you want a daily email voting reminder, send your email address to office@mefmaction.com.
    Thanks
     
    Last edited: Sep 27, 2014
    Bob likes this.

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