1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Patient Experience: "What Bronllys taught me about pacing."
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
Discuss the article on the Forums.

Report on Dr. Jose Montoya's talk at Stanford on March 3, 2011

Discussion in 'General ME/CFS News' started by richvank, Mar 7, 2011.

  1. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    734
    Hi, all.

    I attended this talk, but haven't been able to report on it until today, because I've been at the Orthomolecular Health Medicine conference over the weekend.

    I arrived late at the talk because of the difficult traffic and parking situation at Stanford. I think there must have been an athletic event going on.

    There were approximately 100 people present for the talk and it was being videoed. I understand that the video will be available on youtube in a few weeks.

    When I arrived, Dr. Montoya was outlining the symptoms of CFS and its diagnosis.
    Dr. Montoya is clearly a compassionate man, and is committed to making progress in the understanding of the involvement of infectious pathogens in ME/CFS. I had heard him speak in the past at an IACFS/ME conference, and had met him personally a few years ago at the Ratna Ling working group seminar on CFS. He has been working for some time to put together a research program at Stanford.

    He described his own history with treating and studying this disorder. He is a specialist in infectious diseases, and his former experience was with toxoplasmosis. He got involved with CFS when an international patient came to Stanford for help and was referrred to him. She had very swollen lymph nodes and other symptoms of viral infection. He decided to treat her with an antiviral, and this turned out to be effective. Shortly after this, two more patients came to him with similar situations, and again he treated with antivirals successfully. This led to his published pilot study, and later, a larger study funded by Roche, using valgancyclovir (Valcyte). The pilot study also showed positive results. In the larger study, he focused on patients with a viral-type onset of CFS, and who had high titers for antibodies to EBV and HHV-6.

    I had not heard details of the results of the larger study until this talk. He reported in the talk that they did find statistically significant improvement in some of the parameters they measured, involving fatigue and cognitive function, but I can't remember the specific test panels they used.

    He showed the plots of the data, and there appeared to me to be quite a bit of "zigzagging" of the measured parameters as a function of time, as well as considerable overlap between the plots for the antiviral-treated patients and the controls. While comparison of slopes reportedly showed statistically significant differences between the two groups, I would not say that the differences "jumped right out" when I looked at the raw data. One issue was that the two groups, though composed of randomly assigned individuals, had fairly different average initial values for the measured parameters. So the final actual average values of these parameters did not come out very different between the treated and untreated group in at least one plot. Perhaps the differences would have been more striking if the number of patients had been larger, so that the average initial values of the parameters for the two groups would have been more nearly the same. This, of course, is limited by funding. I suspect that the reason these results have not been publicized much, though the study was done quite a while ago, is that they didn't show very striking differences. Hopefully this study can be followed by a larger one with a more focused subset of patients, and the results will be more clearcut.

    Dr. Montoya plans to continue his study of viral involvement in CFS and has the funding (from several sources) to do so, as well as having established collaboration with other researchers at Stanford and elsewhere.

    One point he made is that it appears that it is necessary to treat with an antiviral for a longer time than was done in earlier studies by others, which did not show positive results. One concern is whether there are serious side effects of longer term use of these drugs. Valcyte has been found to produce cancer in animals after long-term use. This has not been found in humans, but is a concern, and Dr. Montoya emphasized that the people in his studies are made aware of this as part of the required informed consent.

    On XMRV, he reviewed the published papers, and concluded that the issue is not settled yet as to whether XMRV is associated with CFS or not. He will be participating in the NIH-sponsored study led by Dr. Ian Lipkin from Columbia University to try to resolve this issue. I asked him if he is currently testing patients for XMRV, and he replied that he has asked researchers from another department at Stanford to develop a test for XMRV, and they are working on it.

    He emphasized that there appear to be subsets within the CFS population, and that there are elevated titers of antibodies to a variety of pathogens present in various patients. In addition to antibodies, his group is also measuring a variety of other parameters, including some cytokines.

    On the PACE trial, he emphasized that cognitive behavioral therapy and graded exercise therapy should not be viewed as cures for CFS, and he showed quotations from the published study that showed that they really did not help very much.

    Someone from the audience asked what the current waiting time is to get an appointment to see Dr. Montoya personally, and the answer from his staff was that it is running between two and three years at present. Dr. Montoya noted that his colleague, Dr. Andreas Kogelnik, is also seeing patients, however.

    Those are the main things I can remember, and I recommend that people look for the video on youtube a few weeks from now to find out more.

    Overall, I think that it is very significant that Dr. Montoya has been able to get a research program started at Stanford that is looking at infectious pathogens in connection with CFS and other chronic illnesses. I shook his hand after the talk and encouraged him to keep up the good work!

    Best regards,

    Rich
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,824
    Likes:
    3,876
    australia (brisbane)
    Thats good to have someone else studying this as well as WPI, the more the better.
  3. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,909
    Likes:
    2,938
    N. California
    I had ten vials of blood drawn last June for Montoya's study of chronic illnesses, including CFS. Did he speak about that study?

    I am wondering when we might get our results for thos tests... I think 50-60 pathogens were tested.
  4. silicon

    silicon Senior Member

    Messages:
    147
    Likes:
    70
    He did not comment on the current bloodwork study. Apparently they are still looking for some more subjects! Also, several of us received revised consent forms to sign a couple of months ago. Things seem to be proceeding slowly...
  5. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,909
    Likes:
    2,938
    N. California
    Thanks Silicon. I was wondering what was up with this study... So it's slow as in s--l--o--w.

    Oh well then.
  6. consuegra

    consuegra

    Messages:
    97
    Likes:
    25
    Rich,

    Thanks for this write-up. Thanks for spending the time to do this.

    This talk seems similar to the one that he gave at the ILADS conference in October. When I talked to him then, he spoke of a cytokine profile that was near completion, that he wanted to spend the time "to get it right". I hope this is coming along in time.

    Montoya is first rate. Unfortunately he is a bit on his own. I hope that he can team up with the WPI and others.

    Chris
    http://cfspatientadvocate.blogspot.com
  7. Timaca

    Timaca Senior Member

    Messages:
    409
    Likes:
    48
    Rich, thanks for taking the time to post this summary. Dr. Montoya is truly a compassionate man, and very smart. I'm glad he's working on the CFS problem.

    It is my understanding that his talk will be linked to his website: http://chronicfatigue.stanford.edu/

    Best, Timaca
  8. Grape Funk

    Grape Funk Senior Member

    Messages:
    113
    Likes:
    0
    USA
    thanks for this, much appreciated.
  9. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    505
    Los Angeles, CA
    If Montoya needs more subjects, can't he get someone in another city to collect samples from subjects there? Like, say, LOS ANGELES?
  10. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    14
    Or Boston??
    :D
  11. toddm1960

    toddm1960 Senior Member

    Messages:
    155
    Likes:
    3
    Rochester, New York
    I wonder why Stanford would try to develop a test to detect XMRV when a proven one is out there already. Is this another if it out there we're smart enough to find it without anyones help study?
  12. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,309
    Likes:
    4,016
    Sth Australia
    There isnt a proven test out there yet which everyone is agreeing on. Who knows what test will be the one everyone will in future end up using.
    ................


    Thanks for this thread
  13. CBS

    CBS Senior Member

    Messages:
    1,356
    Likes:
    212
    Western US
    In the past, Dr. Montoya has been very careful to limit the geographic distribution of the patients in his studies. His concern has been the potential for geographic diversity/distribution of viruses. In essence, be sure that you can find what you can find before getting into the more complex questions of geographic differences.

    As for LA, not really sure what he considers too far to be considered in the same geographic region. In my case, even though I first got sick while I was working at Stanford, right now there's quite a large mountain range between my home and Palo Alto and so I've been excluded from participating in any of his studies so far.
  14. Hope123

    Hope123 Senior Member

    Messages:
    1,141
    Likes:
    531
    Thanks for the report, Rich!
  15. August59

    August59 Daughters High School Graduation

    Messages:
    1,479
    Likes:
    397
    Upstate SC, USA
    A place like Stanford will always try and develop their own test because they have the capability. I'm guessing that they don't want to buy one due to it is probably very expensive. Just a guess.
  16. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,836
    Likes:
    729
    Concord, NH
    I second this!
  17. Forebearance

    Forebearance Senior Member

    Messages:
    359
    Likes:
    98
    Great Plains, US
    Thank you so much for the summary, Rich!
  18. toddm1960

    toddm1960 Senior Member

    Messages:
    155
    Likes:
    3
    Rochester, New York
    WPI didn't find any XMRV? Every negative study to follow has used it's own testing to find it, then couldn't find it so..............
  19. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,836
    Likes:
    729
    Concord, NH
    CBS,

    As for LA, not really sure why he considers too far to be considered in the same region? Don't they say that "bugs" can become pandemic in not time these days, due to international travel? So it seems odd to me to limit your participants to such a small area. Although I am not a researcher.

    GG
  20. CBS

    CBS Senior Member

    Messages:
    1,356
    Likes:
    212
    Western US
    Hi GG,

    I didn't mean to say that he considers LA to be too far. I was trying to say that he considers being on the other side of the Sierra's and across the "basin and range" of Nevada/western Utah to be too far for the purposes of his first study. I didn't push him on why. It just was. Out of respect (which he has earned from me) I assumed that his geographic restrictions were well thought out and designed to result in the most robust data possible. I've talked with him enough about research to know (and he knows my professional background) that the best possible study was his priority. Sure I would have liked to have been a subject but if he had a enough subjects in the "local area" to comprise the best possible cohort then whether or not I participated was a minor consideration.

    I don't know what his thinking is regarding LA or on the NIH Lipkin study.

    Best of luck,

    Shane

See more popular forum discussions.

Share This Page