arrow19 Comments
  1. Sean Lodin
    Jun 18 - 11:23 am

    This is awesome!! But when will they start treating patients? I contacted them to be seen there but they weren’t accepted patients. I’ve lived in the heart of Silicon Valley and I’m a patient of Dr Montoya’s and I’ve had ME/CFS since 1998. We hear all this great stuff about the OMI but why can’t I call and make an appointment with a physician and receive treatment? Equal Access to healthcare now!
    Thanks, Sean

  2. david
    Jun 18 - 11:25 am

    YES!

  3. Sean Lodin
    Jun 18 - 11:34 am

    How does one become a patient at the OMI? I’ve been a patient of Dr Montoya’s since 2006 and I’ve lived in the heart of Silicon Valley my entire life and I’ve had ME/CFS since 1998. So how much longer do we have to wait for the OMI to start treating patients? Where’s the link to contact them to set up an appointment with a physician? Here’s to Equal access to health care!!!!
    Thanks,
    Sean

  4. Cort Johnson
    Jun 18 - 11:43 am

    I’m posting this for someone else who couldn’t

    “How does one become a patient at the OMI? I’ve been a patient of Dr Montoya since 2006 and I’ve lived in the heart of Silicon Valley my entire life and I’ve had ME/CFS since 1998. So how much longer do we have to wait for the OMI to start treating patients? Where’s the link to contact them to set up an appointment with a physician? How does someone on Medicare and SSI get treatment at the OMI? Here’s to Equal access to health care!!!!

    Thanks,

    Sean

    • Cort Johnson
      Jun 18 - 11:45 am

      I don’t actually know the OMI contact for that but they do have offices and they are seeing patients..I saw them when I was there…

      Yes, here’s to equal access to health care. I hope you can get in.

    • Jian Liu
      Jun 18 - 2:33 pm

      I saw Dr. Kogelnik last week, after a one month wait (it was supposed to be 2 weeks, but the initial appointment was canceled at the last minute).

      I came down with post-viral fatigue type symptoms about 10 weeks ago and have been trying to get diagnosed and start treatment ASAP before things have a chance to set in. They checked me for POTS and took blood draws to get viral titres; I go back in a couple of weeks to discuss results.

      Dr. Kogelnik spent about 45 minutes with me discussion my history and discussed some treatment ideas; he’s very patient and a good listener. However, my sense is that treatment options are going to somewhat reflect their research aims, e.g. he is not going to look for chronic Lyme in all his patients, even though that may be a factor in a good subset of ME/CFS suffers. Apparently I have mild POTS, and daily saline IVs for a week suggested.

      If you want to see him, you will need a referral. Contact them here: http://openmedicineinstitute.org/contact-us/

      Their e-mail is clinic@openmedicineinstitute.org

      • Sean Lodin
        Jun 18 - 10:23 pm

        Thank you very much! :-))

  5. Questus
    Jun 18 - 12:03 pm

    Good article Cort. Thank you.

    • Cort Johnson
      Jun 18 - 7:32 pm

      Thanks

  6. Rich Perillo
    Jun 18 - 12:05 pm

    Big Pharma isn’t going to be interested in losing money in the long haul! In other words, they’re not going to kill the goose that lays the golden eggs. The biggest golden egg is “inflammation”. But then, it is inevitable, eventually!

  7. Jeanie Pochatko
    Jun 18 - 12:39 pm

    I don’t know how you do it, Cort, but another great article! I was able to really focus on everything you were writing about. You made it easy to understand ,and I have a sense of real hopefullness in reading what these researchers are doing, their investment and interest in CFS.

    After all these decades the future finally looks so much brighter for all of us suffering every day with this illness.

    What the nurse said was very touching and yet so true. So many of us still get the bugged- eyed look from doctors when we try to explain to their question about how much exercise are we doing,and our answer is that we cannot exercise because we have CFS. We can see the distain in their eyes as if we have done something wrong that we should feel embarassed about. (And that is not being paranoid. It is still happening with every new doctor I see)

    Thank you, Cort. You are a light in the darkness.

    • Cort Johnson
      Jun 18 - 7:37 pm

      We are still so much in the dark ages.. What this disease needs is validation and a name change; in short research. I think Kogelnik has found a way to elicit interest and get research going without a ton of money. We just have to keep pushing…

      If we can get the CDC or someone else like that to validate the PEM in this disorder using the 2-day exercise test…I think we could blow the lid off this thing. In my opinion that’s numero uno for us.

  8. Helle Nielsen
    Jun 18 - 2:41 pm

    Targeting NK cells in rheumatoid arthritis:

    NKG2A is an inhibitory receptor present at the surface of a fraction of NK cells, NKT cells and T cells. NKG2A+ NK cells can infiltrate inflammatory sites, particularly in inflamed joints of patients with rheumatoid arthritis (RA). These cells have been shown to be able to recognize and kill chronically activated CD4+ cells, as well as other pro-inflammatory cell-types that mediate joint-destruction in RA patients. Targeting NKG2A could therefore be beneficial in patients suffering from RA or other chronic inflammatory diseases.
    http://www.innate-pharma.com/en/product-pipeline/iph2201-nn8765-anti-nkg2a-mab-licensed-novo-nordisk/s

  9. Rebecca
    Jun 18 - 3:38 pm

    I hope that the OMI biobank will accept samples from patients who are bedbound/homebound and unable to leave their homes for a blood draw. There is no reason why the sickest patients cannot provide blood, urine, stool and cheek swab samples from home.

    If OMI excludes the severest patients, Dr. Kogelnik will be missing out on an invaluable resource. Most studies have focused exclusively on mild/moderate patients. Perhaps that is why after 30+ years of research, we have ZERO biomarkers and ZERO FDA-approved treatments.

    • Sean Lodin
      Jun 18 - 7:02 pm

      I contacted OMI weeks ago and they told me that they are a research only facility and that I would have to join a study. But after reading this article it clearly seems that the OMI is treating patients and not just having them as a participant in a research study. The OMI told me that they hoped I could join a study but they gave me no links and have not kept in contact with me. My concern is how they are selecting patients to be treated? How do they choose who gets treated there? Why isn’t Montoya able to refer patients to the OMI? The OMI is essential in that they publish their info but what’s the use if we can’t access it?

  10. Sean Lodin
    Jun 18 - 10:28 pm

    Sounds like all I need is a referral from Dr. Montoya, thanks again for the update on the OMI !! :-)) I will contact them again soon!

  11. Sean Lodin
    Jun 18 - 10:31 pm

    Sorry for the redundant comments I thought they we’re not posting and there’s no delete button. Thank you for the awesome article and for the contact support on the OMI :-))

  12. Bob
    Jun 20 - 6:33 pm

    Great article, thanks Cort.

  13. Nancy
    Jun 21 - 7:17 pm

    Going through a particularly difficult period. Your article gave me hope. Many thanks, Cort!

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