Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

Naviaux Study Info Imbeded In Collaborator's Blog Post

Discussion in 'Latest ME/CFS Research' started by Never Give Up, May 29, 2016.

  1. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

    Messages:
    970
    Likes:
    4,013
    http://www.gordonmedical.com/unrave...unding-replication-study-on-cfidsme-findings/

    Posted 5/27/16 by Eric Gordon, M.D., a physician focusing on "chronic illness".

    .

    I do hope that this "post Lyme" group is one clearly defined subset heading into the study.

    One sticky bit is this here:

    Hoping the selection criteria for the completed Naviaux study is not too murky to be useful...

    This part seems a bit fishy to me:

     
  2. Ben H

    Ben H OMF Correspondent

    Messages:
    854
    Likes:
    9,725
    U.K.
    Thanks for posting this @Never Give Up. I'm extremely interested in all things CDR.

    I don't think the 'donate $1500 and get your own metabolomics test' is dodgy at all though. Sure, it's unconventional, but these researchers literally RELY on donations for their research. It's a method of getting funds and benefitting the donor in the process.

    We can all blame our respective organisations and NIH that they have to go to these measures. It's ludicrous and criminal.


    B
     
    Last edited: May 29, 2016
    Tally, Grigor, Jennifer J and 5 others like this.
  3. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

    Messages:
    970
    Likes:
    4,013
    What's "CDR"?
     
  4. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

    Messages:
    970
    Likes:
    4,013
    I see it now, cell danger response...
     
    Ben H likes this.
  5. snowathlete

    snowathlete

    Messages:
    3,312
    Likes:
    14,622
    UK
    Whether Lyme can lead to ME/CFS or not is an open issue. But for the test to be useful for ME/CFS we need to compare it against other disease controls, to confirm it is a unique result, not just healthy controls. So glad this is happening but perhaps should compare to something more clearly distant, like MS or something as well.
     
    M Paine, Cheshire, Snickers and 3 others like this.
  6. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,872
    I thought the OMF was funding a Naviaux study into metabolites / metabolomics ?
     
  7. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

    Messages:
    970
    Likes:
    4,013
    Me too.
     
    Bob and Comet like this.
  8. Ben H

    Ben H OMF Correspondent

    Messages:
    854
    Likes:
    9,725
    U.K.
    Yup, they are. I think they might be sharing researchers but @snowathlete might have a clearer understanding of this.

    The only thing which worries me is that donations might get confusing. I'd like to see it all under the umbrella of Davis personally (which it might be but not sure).


    B
     
    snowathlete, perrier, Comet and 3 others like this.
  9. Sasha

    Sasha Fine, thank you

    Messages:
    12,808
    Likes:
    34,302
    UK
    There's more stuff on this page:

    http://www.gordonmedicalresearch.com/?page_id=142

    In particular:

    So did I. I'm a bit confused. I think they could do with some clarification.
     
    Simon, AndyPandy, Hutan and 5 others like this.
  10. Bob

    Bob

    Messages:
    10,703
    Likes:
    34,252
    England (south coast)
    I don't know where the Gordon Medical Research centre, or Gordon Medical Associates, have suddenly sprung from. Never heard of them before. They seem to work closely with Dr Naviaux.

    The Gordon Medical Research Center website says this about them...
    http://www.gordonmedicalresearch.com/?page_id=48

    http://www.gordonmedicalresearch.com/#


    And the following is for Gordon Medical Associates, which is not the same as the Gordon Medical Research Centre...
    http://www.gordonmedical.com/unravelling-complex-chronic-illness/about/
     
    Last edited: May 29, 2016
  11. Bob

    Bob

    Messages:
    10,703
    Likes:
    34,252
    England (south coast)
    snowathlete, Valentijn and Sasha like this.
  12. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,872
    Sounds a bit sensasionalist to me
     
    IreneF and Comet like this.
  13. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    11,007
    Likes:
    32,329
    USA
    I had the metabolomics test at OMI in May 2015 as part the research but no idea how my results were used and the data was not shared with me (which is okay and am just hoping it was helpful to them!)

    Gordon medical group is a separate entity and am also a bit suspicious of them asking for donations and implying it will go to OMF or the Big Data Study. I would want further clarification myself.
     
    Groggy Doggy and Comet like this.
  14. Bob

    Bob

    Messages:
    10,703
    Likes:
    34,252
    England (south coast)
    It says that they've recently received a grant for a follow-up metabolites study...
    http://www.gordonmedical.com/unrave...unding-replication-study-on-cfidsme-findings/
     
    Justin30, Comet and BurnA like this.
  15. Sushi

    Sushi Moderation Resource Albuquerque

    Messages:
    15,430
    Likes:
    23,819
    Albuquerque
    The research centre may be new but Gordon Medical Associates have been treating ME/CFS patients for many years.
     
  16. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,872
    did they imply that ?
     
  17. Bob

    Bob

    Messages:
    10,703
    Likes:
    34,252
    England (south coast)
    I get the impression that they were seeking funds, independently of the OMF, before the collaboration with the OMF...
    http://www.gordonmedicalresearch.com/?page_id=142
     
    Last edited: May 30, 2016
    Daisymay and BurnA like this.
  18. Marco

    Marco Grrrrrrr!

    Messages:
    2,380
    Likes:
    3,200
    Near Cognac, France
    Mmmh!
     
  19. Bob

    Bob

    Messages:
    10,703
    Likes:
    34,252
    England (south coast)
    I don't think they've implied that; they haven't mentioned the OMF or the big data study. Their website focuses only on the particular studies that they are involved with. And they explain what they will do with any donations. But some of their info needs updating, now that they have a grant for the larger study.
     
    BurnA likes this.
  20. Bob

    Bob

    Messages:
    10,703
    Likes:
    34,252
    England (south coast)
    For donations, it says...
    http://www.gordonmedicalresearch.com/?page_id=17
     
    Last edited: May 30, 2016
    snowathlete and Comet like this.

See more popular forum discussions.

Share This Page