A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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The Open Medicine Institute, ME/CFS Research?

Discussion in 'General ME/CFS News' started by TheMoonIsBlue, Oct 24, 2010.

  1. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Does anyone know what this place is? There isn't much info on the website.


    When I click on research it says:

    The Open Medicine Institute collaborates with academic, industry and community partners to conduct cutting edge research in clinical medicine. We specialize in the use of genomic and other biotechnologies and informatics to look for novel diagnostic and treatment pathways that can easily be applied in clinical practice.

    Our Research Focus Areas
    Chronic Fatigue Syndrome (CFS)/Neuroimmune Disease
    General Genomics
    Infectious Diseases

    With our physician research network, we are currently conducting clinical trials and other studies in these areas.Furthermore, we have launched Registry and Biobanks in these areas as well. Currently they are only available through one of our collaborating clinics, these will be available for general registration in late summer 2010. Public pre-registration will begin August 1, 2010 - check back here for more informaiton.
  2. August59

    August59 Daughters High School Graduation

    Upstate SC, USA
  3. urbantravels

    urbantravels disjecta membra

    Los Angeles, CA
    Isn't the "biobank" being referred to simply participation in the CAA's biobank? That's what I would have assumed.

    That is a spectacularly uninformative website.
  4. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Hmmm.....strange. Yes, the website is very uninformative and vague.. I've checked it several times over the last 6+ months. Has anyone emailed them and gotten a reply? It says:

    ....... Public pre-registration will begin August 1, 2010 - check back here for more informaiton. (I've checked back-there's still no info)
  5. chloe


    Do you smell a rat? I went there as a patient, wanting all of this to be true. I thought it was a clinic --- where you go,
    and he's the doctor, and you're the patient But he failed to even articulate that, and I walked out, paid the fee, but left uttery confused as to what the place was about. I think he just wanted to do studies, but what the "studies" were, I've no clue. Went back a second time, and he agreed to treat me --- so perhaps my confusion was rightly placed (that he's not interested in being a clinician). But it was a very rock road. Dr. K is abysmal clinician, in my opinion.
    Failed to warn of serious side-effects. Opposed to "second opinions." Kept saying he "knows those people," and I believe he was concerned that colleagues might take issue with quality of care. Who knows. But I thought there was a good
    amount of arrogance and ignorance, more than I am wiling to tolerate in a physician. I am embarassed I went for the bait. Is this is the reason he is not in same clinic with Montoya? I know Montoya is looking for another person to help staff his clinic, and Dr. K obviously not there. On the other hand, Montoya is a peach. Montoya has a lot of respect for patients, that I did not observe this qualities at all in Dr. K. He will run right over you. (Writer lifts up shirt to show tire marks.) When writer complained treatment, he gave sob story about how "we've bent over backwards . . . " then made threatening statement and denying that he ever said "No" to second opinion, when in fact he told staff twice that he would not cooperate with second opinion. Hassle with getting medical records. Perfect doc if you are sadist.
  6. cybercat


    West Coast
    I am a patient of Dr. Kogelinik's (Open Medicine Clinic/Institute) and so is a friend of mine. I think he is very smart and very competent. He gets back quickly via email. I know someone who saw Dr. Montoya and was helped with Valcyte but then Dr. Montoya increased the dosage and the person got a lot worse and has been that way every since. Kogelnik had his name on a paper with Cheney and Peterson published in Science about how XMRV is not linked with CFS. He has a Ph.D. and MD. I use him in conjunction with my GP and the Institute for Restorative Health in the Sacramento area, which has a naturopathic doctor.
  7. InvertedTree

    InvertedTree Senior Member

    Thanks for sharing your experience chloe. I too had a lousy experience with kogelnik as well as many other people i've been in contact with. I have heard only 2 people who have been happy-one is cybercat and the other is someone I'm sure works for him.

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