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Stanford Chronic Infectious Illness Initiative (Including ME/CFS)

Discussion in 'General ME/CFS News' started by Cort, Dec 22, 2010.

  1. Cort

    Cort Phoenix Rising Founder

    montoya.jpg He recently sent a letter to his patients and supporters that caught them up to date on his work and his plans for chronic fatigue syndrome and other chronic inflammatory infectious disorders. He is another example of a respected researcher that has made a strong commitment to chronic fatigue syndrome - something we can all be grateful for.

    If he's successful at what he's attempting to do he'll achieve one of the great goals of ME/CFS research; he'll define a group or groups of patients using biomarkers giving them legitimacy and providing them treatments and shepherding them into the embrace of the US medical system. Of course he'll be doing that under the umbrella of one of the more prestigious Universities in the world.


    Below is an overview of the letter; the entire letter is posted below


    Dr. Montoya is leading the august Stanford University into areas where many other university’s fear to tread - the chronic infectious diseases such Lyme Disease, (some types of) ME/CFS as well as multiple sclerosis (MS). It appears, though, that his initial work has paid off and has laid the groundwork for growth in the future. Dr. Montoya reports that he has been able to identify several subgroups of patients who’s lives have been ‘dramatically changed’ due to prolonged anti-microbial (antiviral/antibacterial) therapy.

    His new initiative aims to investigate the infectious underpinnings of, and provide biomarkers for,a wide array of difficult to understand diseases including ME/CFS, chronic Lyme disease, epilepsy, MS and others.

    Recent work - they have recently wrapped up a number of longstanding projects and have or are submitting the results for publication. These include two papers on the double-blinded Valganciclovir trials in EBV and HHV-6 positive ME/CFS patients that started some years ago. Another paper indicating both that clinical (symptoms) and viral titers responded to antiviral treatment in HHV-6 infected patients should be in press in the not too distant future.

    (Interlude: Barcelona Conference - According to a report on the internet in November Dr. Montoya presented evidence suggesting that monocytes may key a role in this type of ME/CFS patient and that several immune markers (IL5, IL17F, ENA78, EOTAXIN, IP10) improved during treatment - a potential breakthrough in demonstrating the legitimacy of antiviral treatment (and the disorder itself). He has also found that an early antigen marker usually associated with cancer may be a biomarker for this group, that HHV6 integrates into the chromosome of CFS patients, which is apparently not normal for this virus. (Viral integration into the chromosomes means that when the cell replicates the virus replicates as well).

    Current Work:

    The Big Pathogen Study - They are currently collaborating with Dr. Lipkin and other colleagues on a comprehensive analysis of the pathogens in ME/CFS

    stanford.jpg Immune Signatures - They are analyzing the immune response using gene expression, cytokine profiles and phosph immune-flow to look for biomarkers and immune signatures correlated with these infections. These biomarkers could be used both to diagnose and to assess improvements during treatment.

    Biomarkers in the Brain - Finally? - in a novel approach that reminds one of the attempts to correlated MRI findings with disease early on in the history of CFS, the Montoya team is doing sophisticated new MRI techniques to see if they can use brain imagining to identify unique abnormalities in infected individuals. Several of these pathogens are able to access the central nervous system.

    A New Website - a new website explaining their work should be open early next year and a patient forum has been set up http://health.groups.yahoo.com/group/IACFS/

    Quantifying Impairment -Legitimizing ME/CFS - they are also using sub-maximal exercise testing and EEG readings to quantify (and make real) the physical and cognitive impairments in ME/CFS.

    Education and Outreach

    • A Major Research Meeting - will be held to change information on and educate investigators on ‘chronic inflammatory diseases.
    • Biennial Education Meeting - will educate researchers, students, etc. on their progress
    The Ultimate Goal - is the formation of a Center for Infection Induced Chronic Disease at Stanford, kind of a Stanford Centers Of Excellence for chronic infectious diseases that combines treatment and research. This is a big project that takes much teamwork and over the next five years Dr. Montoya has committed to enrolling and integrating many of Stanford's best faculty and resources in the project and already has the support of the Director of the Institute for Immunity, Transplantation and Infection, and the Chair of the Department of Medicine.

    Let the good times roll…

    If you would like more information about any of the projects listed, are interested in participating in any of the research, or would like to financially support a project please contact June Lang at 650-234-0674 or at: june.lang@stanford.edu
    or givingtostanford.stanford.edu (Jose Montoya MD, CFS) or mail to

    Division of Infectious Diseases
    Office of Medical Development
    2700 Sand Hill Road
    Menlo Park, CA 94025 notation on check: Jose Montoya MD, CFS

     
  2. lancelot

    lancelot Senior Member

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    southern california
    This is great news! Dr Montoya has been a great friend to the CFS/ME community and it looks like they are trying to build a Center for Excellence at stanford! i also see Lipkin's name in there! As a PWC in california, where shall i travel for care, WPI in neveda or Stanford in Cali?
     
  3. Cort

    Cort Phoenix Rising Founder

    It's nice to have choices, huh???? Hopefully he will be able to get that Center built. My guess is that he feels he has gathered enough data that he can convince more researchers at Stanford to jump on board and accelerate his work. I don't know how long Dr. Montoya has been involved - CBS would know - but its great that he's had enough positive results to stick with it - and now grow it.
     
  4. lancelot

    lancelot Senior Member

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    Having a major university involved is the best and fastest way to get a CFS Center built because of all the federal and private monies esp for ivy leagues. WPI was built with the help of Nevada University. do you think one of these will be a Center for Excellence soon? it's good to have choices yes and i hope to have a choice soon! i want my life back bro.
     
  5. roma

    roma

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    only the very first and the last links work, i guess i would be moving to Cali or Reno some time soon.
     
  6. Cort

    Cort Phoenix Rising Founder

    I removed the offending links. Stanford with its impeccable reputation certainly is a great place to have a COE - if Montoya can pull it off. IF the NIH can get around to producing some money for COE's, Stanford would be a natural place for federal funding, I imagine...he would be all set up to take advantage of that.
     
  7. Timaca

    Timaca Senior Member

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    Thanks for posting this Cort! Good info here! :) I really appreciate all that Dr. Montoya is doing.

    To clarify....the funds that Dr. Montoya is using for his research and to expand the clinic all come from private donations. I'm not aware of federal monies as lancelot alluded to. If you like what you see happening at Stanford, consider giving a donation.

    Dr. Montoya's wait list is LONG. He is not taking appointments at this time, to my knowledge. He needs to expand the clinic first, and he is working to find the right people to do that. As you know, not just any doctor makes a good CFS doctor! Because his wait list is so long, he is working along with others to get a website out that has information on Infection Associated Chronic Fatigue. That website (as noted in the newsletter) will be up and running in January (hopefully). When it is operational, a web address will be posted on this site. Hopefully this web site will allow patients to get treated in their hometown by local physicians instead of having to travel.

    Timaca
     
  8. CBS

    CBS Senior Member

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    Ivy leagues? The Ivies wish they were the Stanfords of the east! :cool: Go Trees!

    And yes, please consider donating to Stanford's Infectious Disease Dept:

    Development/Planned Giving - June Lang - 650-234-0674.

    I'm asking friends and relatives considering giving me a gift (B-Day, Christmas, etc.) to make a donation in my name.
     
  9. oipemowell

    oipemowell

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    Portland, Oregon
    Thanks Cort for this new info. I really needed something tonite, as I have been severely depressed that past couple days and am feeling weak in the spirit of being sick everyday and alone.

    I left a message for June Lang....worth a try...to be part of some research, maybe. I also have been contacted by the Biobank and hope to donate blood for them and Im waiting for results from WPI on whether I have XMRV or not.

    I also, fyi, got tested via Genova Diagnostics, and I have many of the genetic defects that CFS and autistic children have, which is leading me into Dr. Rich's methylaton protocol...it all is so complicated.

    Doing all I can, as I am sick of being sick.

    So this is good news that there are more and more docs and researchers behind our suffering.

    Have a great Xmas and New Years, if you can, whoever reads my post. Im getting out of dodge..maybe seeing my sister will lift my spirits.

    Much love to all my fellow CFS'rs and ME'rs...Donna
     
  10. Cort

    Cort Phoenix Rising Founder

    Have a great visit with your sister! Try and find something to celebrate that lifts your spirits....It all good news with people like Dr. Montoya get interested in and then sticks with this disease. He's a top notch researcher; a critical guy with a discerning mind....I think its so validating for this illness that he has gotten interested and stuck with it - after seeing hundreds of patients - he feels he's onto something. I imagine he can feel it! And now he feels its time to expand - to get other researchers involved....this is really encouraging stuff!

    Try and take a break from CFS as much as possible and enjoy!
     
  11. Cort

    Cort Phoenix Rising Founder


    GO TREES!

    :victory::victory::victory:

    It reminds of my own alma mater just over the hill

    Go Banana Slugs!

    :thumbsup::thumbsup::thumbsup::thumbsup::thumbsup:
     
  12. oipemowell

    oipemowell

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    Portland, Oregon
    Come a long way finally

    I just wanted to add that twenty years ago, when I first got a computer and got online to see what people knew about CFS, NOBODY had any clue and everyone was despondent and in deep darkness. (Ive been sick since 88).

    I compare that to today, when we have so much going on I cant keep up with the deluge of new info and studies, etc, going on today. We owe alot of this to the WPI, Annette Whittemore, and Judy Mikovits who challenged the status quo.

    It's about time, after two decades...but at least maybe there's still hope for a few better years ahead. Bring on the anti-virals, & anti-retrovirals!!! ANYTHING to feel better.

    I hope we can all feel better real soon. :victory:
     
  13. CBS

    CBS Senior Member

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    Love the Banana Slugs (and the campus)! UC-Santa-Cruz-Banana-Slugs.jpg


    & the Trees stanford tree.jpg
     
  14. Cort

    Cort Phoenix Rising Founder

    ACHHHHH! My heart bleeds for that campus.....so beautiful.....I can forgive it for getting ill there, what a place the City on the Hill in the Redwoods was........

    Thanks to Being we got some working links up there now :)
     
  15. eric_s

    eric_s Senior Member

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    Switzerland/Spain (Valencia)
    Yes, very good news. I hope we will get to have a couple of that sort of centres on both sides of the Atlantic.
     
  16. Cort

    Cort Phoenix Rising Founder

    I think that finding of an early antigen found in a certain type of cancer is so frigging interesting.....I can't to see how that turns out...Next year may be the year of surprises.....(good ones!:)
     
  17. pamb

    pamb Senior Member

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    Edmonton, AB, Canada
    This is great news. My husband's GP here is France is finally going to try sending John to see a specialist and maybe, just maybe get more care than the benzos and narcotic painkillers he's been on for so long now. His GP is hopeful that finally it may be possible to find someone here (in practice but linked to a Uni) who might want to stick their neck out a bit.

    I'll be emailing in January to at least a couple and will include links to CCC, the stuff you've posted on OI, and now the info on Montoya. Altogether I'm hoping it might be enough to fire someones imagination over here. The Montoya link could not have come at a better time.

    I'll keep PR posted if we make any progress as I know there are other members here in France.

    Merry Christmas!
     

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