August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
Discuss the article on the Forums.

Gordon Medical Community Sponsored Metabolomic Study (Individual Data)

Discussion in 'Latest ME/CFS Research' started by Nielk, Sep 13, 2016.

Thread Status:
Not open for further replies.
  1. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,609
    http://www.gordonmedical.com/unravelling-complex-chronic-illness/

     
    ZeroGravitas, Hanna, justy and 15 others like this.
  2. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,609
    $1,500 for a personal Metabolomic report. Pretty steep. Who can afford that.

    In addition, Gordon now has an online supplement pharmacy - conveniently selling the supplement needed.
     
  3. trails

    trails Senior Member

    Messages:
    114
    Likes:
    604
    New Hampshire
    Which supplement are you referring to?
     
    Paintmyturquoise likes this.
  4. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,609
  5. trails

    trails Senior Member

    Messages:
    114
    Likes:
    604
    New Hampshire
    Yes, I saw that. I interpreted your original statement as referring to a specific supplement. I see now that you're referring to the entire online supplement store in general. Thanks.
     
    BurnA and Nielk like this.
  6. leela

    leela Slow But Hopeful

    Messages:
    3,222
    Likes:
    7,232
    Couchland, USA
    I am personally familiar with GM, and everyone there is a deeply caring, committed professional who really wants to help with the whole array of neuroimmune disease.

    So they offer the opportunity to their patients to purchase supplements. So does every practice. This is not unusual.

    ETA: regarding the price, this is called Community-Sponsored research for a reason: if NIH actually funded research in any meaningful way, this sort of thing would not be necessary. This is why we have had patients moving across the country and paying out the nose for Ampligen or Ritux. That GM wants to move forward is a good thing, and that many of us cannot afford to participate is a symptom of this whole 35-year tragic saga of denial and disrespect from the majority medical community.
     
    Last edited by a moderator: Sep 15, 2016
    TrixieStix, Nina, sue la-la and 21 others like this.
  7. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,609
    Yes - Sorry. I should have used plural - supplement.
     
  8. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,609

    I think it's important to know if someone is running studies where they will benefit financially from the outcomes.

    I'm also very weary of jumping to quick conclusions. So far, all we have is one small study with no replications. All the subjects of the study came from one practitioner - Gordon.

    Trust me - I would like to find a bio marker and treatment for myself and the millions of patients worldwide as much as anyone else.

    I do have my eyes open though. We have been burned time and time again. I don't think it's right to promise things to this community prematurely.

    If the science will hold up - we will all know when it happens.
     
    Last edited by a moderator: Sep 15, 2016
  9. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,609
    In addition, the majority of doctors do not sell supplements.
     
    Groggy Doggy, actup and Snow Leopard like this.
  10. leela

    leela Slow But Hopeful

    Messages:
    3,222
    Likes:
    7,232
    Couchland, USA
    Dear @Nielk, the only fact you have posted is that they have a supplement shop. They have not made any promises.
    They are offering the opportunity for those who wish to to join their study.
    Please reevaluate the value of what you have posted.
     
  11. RL_sparky

    RL_sparky Senior Member

    Messages:
    304
    Likes:
    1,547
    California
    GMA is plowing any money they make from these tests into the research. $1,500.00 is a lot of money to spend for a test that still needs replication, though I don't think that will be a problem. A cheaper option might come from OMF in the next few months for those that want to wait.
     
  12. duncan

    duncan Senior Member

    Messages:
    2,038
    Likes:
    4,466
    I am more interested in understanding the $1,500 metabolite test before replication of study results.

    Ah, sorry @RL_sparky , we seem to have cross-posted.
     
    RL_sparky likes this.
  13. leela

    leela Slow But Hopeful

    Messages:
    3,222
    Likes:
    7,232
    Couchland, USA
    The fact that they offer supplements to their patients--with no obligation to buy through them-- has nothing to do with the outcomes.

    And thi sis an attempt to replicate with a wider population. Maybe it is you who have unknowingly jumped to conclusions?



    No promises have been made. I"m not sure what facts and truth you are referring to here.

    Exactly. So maybe this study will make important contributions to that end.
     
    Last edited by a moderator: Sep 15, 2016
  14. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,609
    did you see my first post? Do you think I shouldn't have posted about their third study? You think it was wrong to state that $1,500 is more than most of us can afford? The fact that he has an online supplement pharmacy should be a hidden fact?
     
    Last edited by a moderator: Sep 13, 2016
    actup likes this.
  15. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,860
    What makes you think 1500 is steep for a metabolic report ? Do you know where it is available elsewhere cheaper? Do you know the profit margins on it ?

    Tks.
     
  16. adreno

    adreno PR activist

    Messages:
    4,843
    Likes:
    11,020
    I assume that if you participate in the study, you don't pay for the test. Problem solved?
     
  17. Sidereal

    Sidereal Senior Member

    Messages:
    3,095
    Likes:
    17,172
    No, they seem to be funding the study through 1,500 dollar (or higher) donations, and in return for the donation they will give you your individualised results. That's how I read it anyway.
     
    Paintmyturquoise, Valentijn and justy like this.
  18. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,609
    I didn't say if it was steep for a metabolic report. I have no idea what their costs are. I'm saying that for patients this is a steep price. How many can afford this? I know I cannot.
     
  19. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,609
    Do you get your results if your participate in the study?
     
    Paintmyturquoise likes this.
  20. Sidereal

    Sidereal Senior Member

    Messages:
    3,095
    Likes:
    17,172
    The problem is, we will never know if the science will hold up unless people donate, seeing as there is no NIH funding for this disease. Because of this bizarre situation, research groups have to resort to weird things like soliciting private donations and crowdfunding. So, what choice do they have but to sell stuff and ask for donations? Would you prefer this research doesn't take place? Where would you suggest they get the money to do this research if not from the patients who can afford? Life isn't egalitarian, if you can't afford to take part in the study, then don't take part.
     
Thread Status:
Not open for further replies.

See more popular forum discussions.

Share This Page