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!
ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
Discuss the article on the Forums.

Cort's Chat with Dr. Mikovits

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Robin, Apr 23, 2010.

  1. Robin

    Robin Guest

    Has this been posted? If so, please delete.

    http://www.aboutmecfs.org/Rsrch/XMRVBuzz.aspx

    Part three is forthcoming....
  2. serenity

    serenity Senior Member

    Messages:
    571
    Likes:
    3
    Austin
    i eagerly await part III ...
  3. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    Yes we all had a feeling those negative studies had impacted the speed of things.

    As far as I can see in the short term, the CDC's paper will hopefully change things...
  4. dannybex

    dannybex Senior Member

    Messages:
    2,140
    Likes:
    501
    Seattle
    Just wondering if there's a typo here, or not:

    "Dr. Mikovits noted that the federal government was spending billions of dollars on HIV, which affects less than 1 million people in the country yet the NIAID (National Institute of Allergy and Infectious Diseases), the huge pathogen Institute at the NIH, has done absolutely nothing but XMRV."

    Did he mean to say "nothing about XMRV"...or are they working on nothing BUT XMRV? The latter would definitely be preferable.
  5. Robyn

    Robyn *****

    Messages:
    180
    Likes:
    0
    It means there is no funding available for XMRV. I received some of the same information from Judy. We All need to contact the NIAID and ask why there is no funding for XMRV research grants? There is plenty there for HIV. The only funding available has been to going to the NCI for XMRV and the possible connection to prostate cancer. Is CFS not as important? Oh that's right we don't die from it right away. We are just slowly tortured and have everything taken away from us. Then as our prize we get cancer and/or heart problems.

    I have already written them a letter. I believe Cort has too.
  6. alice1

    alice1 Senior Member

    Messages:
    457
    Likes:
    0
    Toronto
    great interview..thanks cort.
  7. citybug

    citybug Senior Member

    Messages:
    522
    Likes:
    36
    NY
    Maybe we could have a thread "letters to the government" where people post their letters, for inspiration for other letter writers and more profile for your letter on the web.

    Thanks for interview Cort, was it hard to set up? and Robin posting it here.
  8. Robyn

    Robyn *****

    Messages:
    180
    Likes:
    0
    Here is the link to the original blog I posted regarding the NIAID http://www.forums.aboutmecfs.org/blog.php?u=1468

    I'm going to see if I can find the letter I sent with their response so check back to this post. I'm rather new at posting links and such so it takes me awhile.
  9. dannybex

    dannybex Senior Member

    Messages:
    2,140
    Likes:
    501
    Seattle
    here's part three...

    Dr. Mikovits Talks Pt. III

    Funky Virus - Whatever the problems with the earlier validation studys some of them did contain well known retrovirologists who, as one commentator put it, "do know how to do PCR". So how could they be getting such different results? One possibility, of course, is that XMRV is trickier to find in the blood than researchers have suspected and that small differences in different studies methodologies have made a difference. Another concerns the composition of the virus itself. I asked Dr. Mikovits if slightly different strains of XMRV in Europe could be part of the problem and, she said, after noting that HIV has two strains, and HTLV no less that four (!), that it would be 'arrogant' to exclude that possibility. She also noted that the fact that the XMRV antibody tests sometimes find the virus where PCR tests do not, suggest that a different strain of XMRV could be managing to elude the PCR's grasp. In fact she stated there was a 50% false negative rate on PCR tests at VIP Dx (ie 50% of the tests negative for XMRV by PCR were positive by other tests).

    Still Confident - Dr. Mikovits is clearly frustrated at the lack of positive findings, the financial stress that being placed on the WPI, and the lack of federal funding but she is still confident in the WPI's results stating again that she does not see any way contamination could have played a role in their findings. The WPI is doing two types of antibody tests; one, which is apparently the ELISA test which measures antibodies to the whole virus and is less precise than the Western Blot test which looks for antibodies to a specific protein on a virus. The Western Blot test is essentially a check on the Elisa test and Dr. Mikovits reported both tests were providing similar findings; ie this is XMRV they are finding.

    Busy, Busy - Dr. Mikovits was finishing up two Department of Defense proposals and then was off to Europe to talk to the British Hematological Society, then it was over to Spain to work on XMRV study there, and then to a 100th anniversary of the discovery of retroviruses. That Science article, by the way, should be out in about two weeks.

    http://www.aboutmecfs.org/Rsrch/XMRVBuzz.aspx
  10. citybug

    citybug Senior Member

    Messages:
    522
    Likes:
    36
    NY
    I think the Dept of Defense applications point out that we really need to make some alliances. There may be some small grants to check out Gulf War Syndrome, Lyme and other diseases but I don't know if the patients are checking out XMRV. What if that's the catalyst (or the other way around) for the reaction to all the chemicals and stress in GWS? ME/CFS could be happening to a lot of other people who don't know it.

    Here is the chart of the money that NIH spends on each disease. There are really very few with less money than CFS. (and you can click on CFS and see all the grants). I'm writing to Kathleen Sibelius at NIH also. Since it's at the top of the tree I figure she has to talk to the president.

    http://report.nih.gov/rcdc/categories/
  11. Robyn

    Robyn *****

    Messages:
    180
    Likes:
    0
    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
  12. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    427
    Likes:
    401
    Illinois, USA
    I would very much prefer a normal interview with quoted questions and quoted answers. The interviewee should speak for herself for the most accuracy.
  13. JillBohr

    JillBohr Senior Member

    Messages:
    247
    Likes:
    0
    Columbus, OH
    Great Proposal. I am here because I have two children with autism and three relatives with ME/CFS (one of those also has fibromylagia as well). If WPI can crank out a published paper on XMRV and autism, the ball game would really change. I must add that you all should not be discouraged when the NIH is looking at XMRV and prostate cancer, any research that is done in this area will also help with CFS. We would not even be talking about XMRV if it were not for the fact that the Cleveland Clinic discovered this. However, the smart people at WPI did know how to put 2 and 2 together and here we are. I think we should encourage the spending of money for XMRV and prostate cancer and also keep writing ourselves and advocate for XMRV research and ME/CFS (I have been writing myself for more research into autism and XMRV). We should alll try to write at least one email per day and encourage others to do so as well.
  14. Gemini

    Gemini Senior Member

    Messages:
    373
    Likes:
    187
  15. jspotila

    jspotila Senior Member

    Messages:
    1,066
    Likes:
    573
    Yes, XMRV was part of the meetings with Congressional appropriators in March that you can read about here: http://cfids.org/cfidslink/2010/040704.asp
  16. Koan

    Koan Be the change.

    Messages:
    2,597
    Likes:
    53
    I agree. This was quite confusing.
  17. Alexia

    Alexia Senior Member

    Messages:
    164
    Likes:
    0
    Portugal
    I understood that this was not really an interview but a summary of the emails exchanged between Cort and Dr. Judy.
  18. Robyn

    Robyn *****

    Messages:
    180
    Likes:
    0
    xxxxxxxxxxxxxxxxxxxxxxxxx
  19. Robin

    Robin Guest

    Does anyone know what the CDC study is? That is separate from the HHS working group papers, right? I'm assuming it's an XMRV study, but, it would be great if someone knew/remembered the details of what patient cohort was being used, and what test.

    It would be interesting if Fukuda vs. CCC were tested for XMRV to see what the prevalence is.
  20. Esther12

    Esther12 Senior Member

    Messages:
    5,105
    Likes:
    4,904
    If the CDC came out supporting the XMRV/CFS, that would be massive. I'm really hungry for any news/hints/tips anyone might have heard. Could Mikovits sounding positive just be a reflection of her confidence that any properly done study will support the WPI's work? Was it more than this Cort? Anyone got a clue when they might be published?

See more popular forum discussions.

Share This Page