Dr. Bell on HHV6 Conference (including Dr. Montoya's study)

Discussion in 'Fibromyalgia Main Forum' started by 013101, Jun 26, 2008.

  1. 013101

    013101 New Member

    I thought this might be of interest. Dr. David S. Bell, one of the pioneers in the field of CFS, attended the HHV-6 Foundation Conference last weekend and has posted his summary and his comments on the presentations. You can find it here in his newsletter (and can click on "printer friendly version" to make it easier to read.


    My best,
  2. mezombie

    mezombie Member

    He, I was just about to post this!

    I found Bell's comments on the presentations particularly enlightening.

    Thanks for posting the article here, Toni.
  3. Khalyal

    Khalyal New Member

    But I'm happy to see you both beat me to it! Finger dyslexia today!

  4. jasminetee

    jasminetee Member

    Thanks so much for posting this and it's great to see that others were ready to as well. I really appreciate all of you that work hard to keep us informed of the latest findings out there. :)

    IMO, Dr. Bell is one of the best CFS specialists out there. I find him to be intelligent and level-headed and he has a heart of gold. He's always believed in us and he's done a lot of work and studies for the children with CFS.

    Dr. Bell wrote: "For those of you hoping to hear that the valgancyclovir (Valcyte) study was going to be the “cure”, I am sorry. But do not give up hope. One of these days….."

    Brings tears to my eyes but I am very appreciative that he is as honest as possible with us and that he takes the time to address us personally.


    [This Message was Edited on 06/30/2008]
  5. swedeboy

    swedeboy Member

    So does anyone know the real results of Montoya's study. The report in the lyndonville news makes it sound like no one got better. Are there any official results available to the public yet? I mean like how many of the 30 total participants got better?

    SMiles, Sean
  6. jasminetee

    jasminetee Member

    about the Valcyte Trial at the recent HHV-6 Conference is called:

    Montoya in Baltimore Sunday June 22

    Try putting it in the Search Box if you can't find it. It's currently on P.2 of the MB.

  7. ladybugmandy

    ladybugmandy Member

    wow...dr. bell's synopsis was great...didn't give much hope, however!

  8. ladybugmandy

    ladybugmandy Member

    maybe we should keep in mind that this was an hhv 6 conference....the hhv 6 foundation subsidizes hhv6-related research.

    where is the EBV or CMV foundation? what if other proteins aside from the HHV 6 protein are present? do they look for those too?

  9. Lichu3

    Lichu3 New Member

    Dr. Bell is good at summarizing things and getting to the point.

    I guess I'm in the minority in that I continue to be optimistic. To me, any research into the biological side of ME/CFS is helpful.

    And I don't agree with Nofool's assertion that this is "bad" science. "Bad" science is not defined by the results but by poor methods and illogical thinking. Since the full study is not out yet, I cannot judge well what is going on. Also, NO medical study is perfect -- there are always flaws, just a question of which ones and how much.

    In research, "bad" results can just be as helpful as "good" results -- it tells scientists what areas they need to address better. If all scientists gave up because their first few experiements weren't what they (or the world) expected, we would be living in a much different world. Thomas Edison went through hundreds of different materials -- all failures -- before being able to invent the light bulb.

    Many of the most admired researchers and docs in CFS are admired partly because they have continued their work in the face of skepticism and absence of spectacular results. Would anyone here rather have Montoya stop his work and go back to looking at only transplant-related infections?

  10. ladybugmandy

    ladybugmandy Member

    hello. i was wondering why you say this study had nothing to do with lerner's work? lerner wasn't involved in it but they both used antivirals...?

  11. Slayadragon

    Slayadragon New Member

    Here is an article on a Japanese medical researcher, Hideyo Noguchi. His picture is on the 1000 yen note (equal to about $10 and thus used frequently).

    Noguchi is known for having discovered the cause of syphilis (spirochete bacteria).

    However, his work on yellow fever is considered to be just as important. Noguchi spent the last part of his life searching for evidence that yellow fever also was caused by a spirochete. He eventually acknowledged that was not the case, but the work he put into the topic allowed others to focus more closely on another angle (viral) and solve the problem soon after he died.


    The issue of failure also was brought to my attention when reading the commencement address given by J.K. Rowling at Harvard earlier this month. Her comments are below.

    I bring this up to suggest that we all congratulate Dr. Montoya for the work that he has done with regard to CFS. Hopefully his having done this study will encourage others to focus their own attention on CFS, and to more quickly come up with the answers that will help us. If we are lucky, perhaps he will continue to put more of his own efforts into the area as well.



    “Ultimately, we all have to decide for ourselves what constitutes failure, but the world is quite eager to give you a set of criteria if you let it. So I think it fair to say that by any conventional measure, a mere seven years after my graduation day, I had failed on an epic scale. An exceptionally short-lived marriage had imploded, and I was jobless, a lone parent, and as poor as it is possible to be in modern Britain, without being homeless. The fears my parents had had for me, and that I had had for myself, had both come to pass, and by every usual standard, I was the biggest failure I knew.

    “Now, I am not going to stand here and tell you that failure is fun. That period of my life was a dark one, and I had no idea that there was going to be what the press has since represented as a kind of fairy tale resolution. I had no idea how far the tunnel extended, and for a long time, any light at the end of it was a hope rather than a reality.

    “So why do I talk about the benefits of failure? Simply because failure meant a stripping away of the inessential. I stopped pretending to myself that I was anything other than what I was, and began to direct all my energy into finishing the only work that mattered to me. Had I really succeeded at anything else, I might never have found the determination to succeed in the one arena I believed I truly belonged. I was set free, because my greatest fear had already been realised, and I was still alive, and I still had a daughter whom I adored, and I had an old typewriter and a big idea. And so rock bottom became the solid foundation on which I rebuilt my life.

    “You might never fail on the scale I did, but some failure in life is inevitable. It is impossible to live without failing at something, unless you live so cautiously that you might as well not have lived at all - in which case, you fail by default.

    “Failure gave me an inner security that I had never attained by passing examinations. Failure taught me things about myself that I could have learned no other way. I discovered that I had a strong will, and more discipline than I had suspected; I also found out that I had friends whose value was truly above rubies.

    “The knowledge that you have emerged wiser and stronger from setbacks means that you are, ever after, secure in your ability to survive. You will never truly know yourself, or the strength of your relationships, until both have been tested by adversity. Such knowledge is a true gift, for all that it is painfully won, and it has been worth more to me than any qualification I ever earned.

    “Given a time machine or a Time Turner, I would tell my 21-year-old self that personal happiness lies in knowing that life is not a check-list of acquisition or achievement. Your qualifications, your CV, are not your life, though you will meet many people of my age and older who confuse the two. Life is difficult, and complicated, and beyond anyone’s total control, and the humility to know that will enable you to survive its vicissitudes.”
  12. pawprints

    pawprints New Member

    Thanks for pointing that out to us. I just printed out that speech and will keep it close by.

    I too am grateful for Montaya's efforts and all those in the study. We are all learning about this illness through trial and error. All of the great CFIDS doctors have had theories and then changed them, expanded them or dropped them. Perhaps this study is just a jumping off point and there will be more insights to follow.

    At least someone tried on our behalf!!
  13. slowhand

    slowhand New Member

    I don't think Lerner stops at the 6th month mark and this might account for the difference between the two . I am also wodering why people are not discussing the data of Lerner's presented in Britain.I haven't even heard from mezombie and he seems like a smart guy to ME.
  14. acer2000

    acer2000 New Member

    Maybe, in the people who are going to get better from Valcyte, it takes longer than 6 months for the fatigue to resolve, regardless of if they are on Valcyte or not. People have been sick for a long time, its possible that their bodies need to recover for a while, even if the HHV6/EBV is shut down. I hope they are going to do long term follow up on the study participants...
    [This Message was Edited on 06/26/2008]
  15. mezombie

    mezombie Member

    Let's keep in mind that this study was funded by Roche. Montoya did his best to formulate a study that made efficient use of the funding. He certainly wasn't given enough to do a larger, long-term study.

    From what I've gathered, Montoya has collected a lot of data that could be useful in identifying other biomarkers that could identify those that would benefit from Valcyte.

    We really won't know the full story until Montoya publishes his study. All of the information we have to date is preliminary.

    I think any researcher who is willing to stick his neck out for us deserves our support.
  16. ladybugmandy

    ladybugmandy Member

    i am very anxious to know the biomarkers...and i know 1 of them is RNase L...thanks to K. Loomis convincing Montoya to test it.

    when i was on valcyte, i was told both by dr. ablashi, people at redlabs, and by my then-doctor, dr. galland, that the RNase L should have changed dramatically by the 5th month if the treatment was working.

    my RNase L was originally 1885 and after 5 months on valcyte, it was 1265 - a negligable change according to the doctors. it should have been well under a 1000, i was told (normal levels are <50)

    does anyone have any idea when the complete study is scheduled to be released?

    if there is someone on the board who has been checking their RNase L levels during treatment, i would love a response.

    thank you:)
    [This Message was Edited on 06/26/2008]
  17. Slayadragon

    Slayadragon New Member

    That's terrific news. I'm so happy for you!
  18. waltz

    waltz New Member

    cat003, that is good news.

    I think if this kind of thing were communicated in the preliminary results, people wouldn't feel so negatively about the study.

    Also, if people do continue to get better after stopping Valcyte, then it seems like they should have made the follow-up period for the study longer, not just 3 months.

    Also, if people continue to get better after stopping Valcyte, then how do they know that a patient's improvement is due to continuing the Valcyte or not? And that giving Valcyte for a shorter time than 6 months wouldn't also eventually "cure" patients? What if most of the virus is actually gotten rid of after a short course of Valcyte and the rest is the body recovering?
  19. ladybugmandy

    ladybugmandy Member

    i am very glad you posted and a heart-felt congratulations to you!

    i am waiting for the day i have my mind back.....you must be ecstatic!

  20. clo1

    clo1 New Member

    i've just been perusing this thread and want to comment as a participant in the stanford clinical trial...first of all, to No fool, although i may be misreading your intentions, it would seem to me that you do not want the trial to be successful...i of course have no idea why that would be...

    i also want to state that the valcyte treatment was horrendous for me and had i not been in the trial i would have discontinued the med long before the 6 months were over...after stopping, i felt worse or as bad as ever EXCEPT for the absence of my daily cracking headaches which are virtually gone; i also noticed that the feeling of "brain swelling" had decreased significantly; 7 months post-valcyte and i am still profoundly weak but i have improved - cognitive function is better although not where i would like it to be; and the other "brain issues" (headaches, swelling) have not come back...i also don't feel "fluish" anymore - just weak as a kitten...as though my life force has been sucked out of me - but that was true prior to the valcyte

    so although i am not a 100% valcyte success story by any means, i have improved...and i started the trial at an extremely low functional level of about 8-15%...

    no fool, i see no reason for you to denigrate and criticize dr. montoya's work when the results have yet to be published...that seems to be a very unscientific approach...clo
    [This Message was Edited on 06/27/2008]

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