8 antiviral Doctors to speak in June 2009

Discussion in 'Fibromyalgia Main Forum' started by stschn, Apr 18, 2009.

  1. stschn

    stschn New Member

    I know that Doctors Learner and Montoya will be there with 6 others but I don't have that information.
  2. ladybugmandy

    ladybugmandy Member

    i thought the meeting was happening this month and in NYC?

    its been arranged by a patient, who must be very wealthy!
  3. spacee

    spacee Member

    whose family is behind getting the best CFS researchers together. They have met but this group may be doing a "viral doctor" group meeting. The wealthy family pays for everything. How wonderful!

  4. SpecialK82

    SpecialK82 New Member

    just out of curiousity - how do you know about the wealthy family? Was this written somewhere? Sue - has Dr. Lerner alluded to a wealthy person/family?

    I remember hearing about another doctor meeting about a year ago initated by a wealthy person....

  5. spacee

    spacee Member

    OR....darn, maybe someone here emailed and I wasn't suppose to repeat it. double darn.

    It is BIG though. That I will say. They have met as a huge group in fairly isolated, nice retreat place. There they were suppose to break into subgroups at other times to address their particular areas of interest. The Methylation thing that RichV. proposes was the one area that every doc there agreed on.

    The family absolutely wants to remain annonymous.

    Anyway, it is a wonderful thing.

    [This Message was Edited on 04/19/2009]
  6. outofstep

    outofstep Member

    Thanks-whoever you are
  7. ladybugmandy

    ladybugmandy Member

    dr. lerner told me about the meeting but i had no idea that it was arranged by a patient. k. loomis told me that in an email.
  8. SpecialK82

    SpecialK82 New Member

    interesting - is K loomis one of the docs?

    Does anyone know any of the others?

    maybe this will encourage these docs to work together more closely - and great things could happen!

  9. ladybugmandy

    ladybugmandy Member

    k. loomis is the executive director of the HHV-6 Foundation. many people email her and she is great about answering questions. the foundation is involved in a lot of research and arranges conferences regarding HHV6 diseases.
  10. stschn

    stschn New Member

    And I do know that all the Valcyte Trial info is in. Will we find out about it then? It's terrible to say but some of the best breaks for us come when someone with wealth gets this DD. WPI is also a great example.
  11. stschn

    stschn New Member

    Could you please tell me what k. loomis e-mail address is? Having a hard time finding out where to send my earth suit when I'm finished with it so that it can be used for ME research and may be alble to help others with this DD that follow me.
  12. ladybugmandy

    ladybugmandy Member


    it is still going to be a while before the montoya paper gets published. i was told he is "very busy"....there really should be a time limit! he must have a lot of research assistants working for him!
    [This Message was Edited on 04/20/2009]
  13. richvank

    richvank New Member

    Hi, all.

    I just want to correct a possible misconception. All the clinicians and researchers in the CFS working group to which people have been referring do not agree that the Glutathione Depletion--Methylation Cycle Block hypothesis is valid for CFS. Some do, and I think the number is growing since the clinical study of treatment based on it was reported last month, but it isn't really accurate to say that they all agree with it at this point. Bear in mind that there are some competing ideas that are strongly held by other people in the working group, including Paul Cheney, Ritchie Shoemaker and Martin Pall. We have frequent and frank interchanges about our different views, and I'm optimistic that this will lead to more rapid progress than we have seen in CFS for many years. Time will tell. I was very fortunate to be included in this group, and also very fortunate that our anonymous patrons chose to fund the study that Dr. Nathan proposed and he and I carried out, with planning support from others in the working group.

    As far as I know, the meeting of virus specialists that has been mentioned here must be funded by another benefactor from the ones who have supported the working groups for CFS and other associated disorders. Dr. Montoya was a participant in the first symposium of the CFS working group, but I am not aware that there is a virus working group under this same umbrella.

    These working groups are not intended to be secret, and some of the members have discussed them in public in the past. However, no special effort has been made to publicize them, either. The sticky point is that they are limited in size, and participation in them has been by invitation only, so there will inevitably be many good clinicians and researchers who were not asked to participate, and there's no point in hurting their feelings by broadcasting the existence of the working groups, so most of us haven't said much about them publicly.

    Best regards,


  14. spacee

    spacee Member

    You know by the time info exchanges hands, it can lose part of what was originally said. I am disappoint to learn that all didn't agree with your hypothesis. I didn't mean to imply that they thought it alone was needed but that it did have merit. But so not all thought that.

    You seem to be a very kind person. Thanks again for trying to help us.

    I wanted to add later. Is that one thing we need here (besides treatments that work) is hope. And knowing that some of the top docs are talking, gives me hope.

    [This Message was Edited on 04/21/2009]
  15. jasminetee

    jasminetee Member

    This definitely gives me hope. Thanks for the clarification Rich and thank you to the generous family!! :)

  16. stschn

    stschn New Member

    But he also has research being done all over the world and some of them are takeing longer than others. It's more important to have acurate information than a fast answer. He is truely a very busy man and this is not the only thing he is doing. When I was to ill to make my Feb 4, appointment and had to cancell I was put on a waiting list to see him and I was number 14, as of today I'm still number 3.

    Thank you for the info on k. loomis I was in the hope of finding one site for donating your body to ME/CFS research with options all over the map so far no such luck. Cort did e-mail me and suggest WPI and that's been on my mind but I feel-unfairly I know-that if I hadn't spent so much time in that area I might not have come down with this DD. UC San Francisco is also possible as it's only 100 miles. But I was treated like dirt there in the 80's and if that same doctor is there I might haunt her all over the halls. I know I'm a little nutty today but that nothing new.
  17. ladybugmandy

    ladybugmandy Member

    coulda woulda shoulda...ive spent most of my life thinking "if only..."...:(
  18. winsomme

    winsomme New Member

    I just tried to email the address for K Loomis and it got kicked back to me. I think maybe the formatting is a little different (ie Caps, etc).

    When i went to the HHV-6 site, their contact page formats her email address as:


    Not sure if that is the reason it didn't go through for me the first time, but just in case anyone is a having a problem, this might be worth a try.
    [This Message was Edited on 04/24/2009]
  19. ladybugmandy

    ladybugmandy Member

    aack! i misspelled her name! i told you "kristen" but its really "kristin"!!! sorry!