1. Patients launch $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!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

Jan 18th Webinar with Dr. Lucinda Bateman

Discussion in 'General ME/CFS News' started by George, Jan 11, 2010.

  1. Lily

    Lily *Believe*

    Messages:
    665
    Likes:
    4
    Nah, I wasn't expecting anything new or more indepth. Don't think I'm expecting anything new from Klimas on the 22nd either, but I don't mind surprises!:D
     
  2. _Kim_

    _Kim_ Guest

    Errr....did you mean Mikovits?
     
  3. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22
    (from Cort, relating to blood supply testing):
    I was wondering the same thing. Tried to get my question on there but just a bit too late! I'm going to assume (and hope) that they are not using the Cooperative Diagnostics protocol, or anything like that... but how can they use their own protocols without having researched them properly? Are they collaborating with the WPI in this regard?
     
  4. _Kim_

    _Kim_ Guest

    Yes, isn't Judy Mikovits on the Task Force?
     
  5. Lily

    Lily *Believe*

    Messages:
    665
    Likes:
    4
    Yeppers, Mikovits on the ProHealth site on Friday. Thanks Kim!
     
  6. hensue

    hensue Senior Member

    Messages:
    269
    Likes:
    1
    I am a little confused about the FMS and Cfs. Since I am positive for xmrv and diagnosed myself with cfs. The graph about pain fits me to the tee. So when they say these symptoms overlap it gets a little confusing.
    Also did the Dr say something about treating cfs patients with fibromyalgia drugs or did I not hear that right?

    If so that is depressing most of the people are on antidepressants of some kind.
     
  7. Lesley

    Lesley Senior Member

    Messages:
    188
    Likes:
    0
    Southeastern US
    Hensue,

    What she said was that they want to repeat the study to see if the results change when FMS patients are on fibromyalgia meds.
     
  8. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    Yes, both Mikovits and Vernon are on the task force. They're apparently using mulitple labs to search for the virus.
     
  9. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22
    That's good news, Cort.. do you have a source for that? I couldn't find it anywhere on google. All I could find was that the NIH is working with Dr. Michael Busch at the Blood Systems Research Institute on the blood supply issue. According to the CAA release:

    No mention of Mikovits being asked, though this was an earlier release. I would be surprised if she was not... Still, I hope the blood supply testing is being advised by Mikovits and Vernon et al, not just run through the "usual channels", as Dr. Hanna at the NIH said last fall:

    Some interesting stuff from Busch back in November was reported in a Nevada paper's blog here ... the main stuff:

    That article was posted November 15 of last year... make of it what you will.. I certainly hope Dr. Mikovits has been allowed to be more centrally involved in all this now.
     
  10. _Kim_

    _Kim_ Guest

    Source = Wanda Jones :victory:

     
  11. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22
    From Wanda, via Wildaisy via Kim:
    So I guess Wanda's saying that they aren't merely testing WPI samples with their own protocols, but are using at least part of the WPI protocol (but to what degree.. is it limited to reagents, or to other methodology?). Still don't know if Mikovits is part of the same working group Vernon is, and how much say they will have anyway. At this stage the NHLBI effort should be working closely with Mikovits to avoid even a bit of the sort of DeFreitas-CDC protocol miscues that Cort wrote about recently.
     
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    186
    Clay, Alabama
    Klimas said that with XMRV results from WPI, suddenly virologists are interested. They have lab and money, but they don't have patients. So they are coming to her and other CFS docts to get the samples.

    As the first one said, if nothing else, suddenly we have the attention of multiple researchers. Suddenly CFS is cool.

    Tina
     
  13. Hope123

    Hope123 Senior Member

    Messages:
    1,142
    Likes:
    539

    This is a good, not stupid, question. After all, the first test used for diagnosing HIV is an antibody test so there is some presumption that if you have a positive antibody, it is likely that you have HIV. And most of the time, it's correct. The false-negative rate for the screening test is very low (unless you are in the window period). But because HIV is a serious diagnosis, it is always confirmed with a second test, the HIV Western blot, which looks for HIV proteins. I'm sure there are rare cases out there but it's pretty much if you have HIV antibodies, you have HIV infection, and will almost certainly need antiretrovirals. How good XMRV antibody tests will be compared to HIV no knows yet though.
     
  14. Kati

    Kati Patient in training

    Messages:
    2,052
    Likes:
    1,545
    I was also a bit disappointed that there was no real new information beside that last slide showing post exertional markers that I couldn't make sense of and wasn't elaborated on.

    Also the fact that Dr Bateman is not even testing for virus reactivations- it sounds like she is not doing any kind of treatment other than encouraging pacing, sleep hygiene and other basic stuff. It has been proven that patients with virus reactivation get better while on anti virals- Dr Klimas, Lerner, Montoya and Peterson will say that. Certainly the benefits are not permanent, but we all would like to get better for a few hours every day- wouldn't we?

    Since a lot of us have heard Dr Bateman's presentation last fall, it would have been great to hear Dr Vernon and see what she has to say. Perhaps it would have been great to reverse the roles and see Dr Bateman as a moderator and Dr Vernon as the speaker.

    Just my 2 cents. Awaiting for my XMRV results and viral reactivation.
     
  15. Sing

    Sing Senior Member

    Messages:
    1,310
    Likes:
    430
    New England
    Graph showing biomarkers after exercise

    I can add that Dr. Bateman said that she is willing to email copies of that paper with the graphs which is in the Journal of Pain to anyone who asks. Dr. Vernon, I believe, said that CAA would add this to their section on XMRV: www.cfids.org/XMRV/default.asp#info so we will have it!

    She said that there is a great deal of collaboration and communication happening now among herself, Dr. Ila Singh who is an XMRV and prostate cancer expert at the University of Utah, and Alan and Cathy Light.

    One question I have--she mentioned a Japanese study which showed that 1-2% of healthy controls have XMRV. Does anyone know of this study?

    Thanks!

    Sing
     
  16. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22
    Yeah, that surprised me too. Her point was that antibody testing is unreliable, but many have acknowledged that without disregarding those viruses altogether, especially because of the findings of HHV6 in nerve and other tissue in patients that had been negative for blood antibodies. (See the HHV6 Foundation website for some general info). Treatments relating to suspected viral infections could still help (and have helped some), and they aren't all as toxic as Valcyte. Plus, some patients are positive for viral testing, so not testing them at all seems irresponsible to me. (I was found to be acutely infected with HHV6 by a culture test; a few days prior to that my doctor at the time had given up on me and said my problems must be in my head because a couple standard viral antibody tests had been negative or inconclusive.)
     
  17. jewel

    jewel Senior Member

    Messages:
    195
    Likes:
    8
    Hi all-- I was unavailable to watch this webinar, so I just want to thank Kim for posting the slides. The "exercise" study slides were amazing; I hope this approach continues to get studied/funded as much as virology studies. As always, the comments and analysis by everyone are thoughtful and detailed. I am just amazed as always at how much people with fatigue and mental fog can produce in their "good " moments. Thank you, Jule
     
  18. I hope that they are published the confidence intervals look fine is there a p value or have i missed it----cant really generalise yet---the same result with larger numbers would be awesome
     
  19. garcia

    garcia Aristocrat Extraordinaire

    Messages:
    934
    Likes:
    103
    London, UK
  20. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    This is from one of Cort's articles regarding that Exercise Study:

     

See more popular forum discussions.

Share This Page