Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Dr. Donna Felsentstein: Does not think her negative X study the answer

Discussion in 'XMRV Research and Replication Studies' started by andreamarie, Nov 2, 2010.

  1. andreamarie

    andreamarie Senior Member

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    I saw Dr. Donna Felsentstein yesterday and was pleasantly surprised. I will only discuss what she said about her X study. She immediately said that just because her subjects were all negative, it DOES NOT mean it was correct. She is very encouraged about Dr. Alter and Dr. Komaroff's study and said that after twenty yrs of her seeing her patients mocked and ignored, she is hopeful. "The brightest are finally attracted to CFS research."
    She did publish in the Journal of Infectious Diseases. The truth is, she had to publish after getting funding. It's a political necessity if you want to keep getting funding.
    When I am not so tired I will say more re my visit, but I think it's interesting that she got dumped on on this board because of her study results.
     
  2. andreamarie

    andreamarie Senior Member

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    Dr.Felsenstein not in control of Boston study

    I also wanted to add that although she contributed to the study she was not in control of the Boston study. She was asked to participate and did expect different results. Since I had an appt I didn't go into details about procedure, etc. I didn't want to spend the time.
     
  3. Sasha

    Sasha Fine, thank you

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    I'd say it's a scientific necessity also; if people buried their negative results, the scientific literature would be full of false positives. You need all the facts to get the full picture.

    The responsible thing to do with a null result is to discuss any reasons why it might have been a false null. As long as she did that, it's fine. It's important to establish at this point why XMRV isn't showing up in some studies and that means discussing the issue.
     
  4. ukxmrv

    ukxmrv Senior Member

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    That's fair enough Andreamarie, can understand why you couldn't spend the time on the study
     
  5. floydguy

    floydguy Senior Member

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    That is encouraging. Thanks for the report.
     
  6. Sean

    Sean Senior Member

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    Agree that negative studies must be published. Science is not advanced by selecting only one side or the other to publish.
     
  7. *GG*

    *GG* Moderator

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    Good point. Is this paper available to the public? Was there any mention as to why they might not have found it?

    GG
     
  8. Cort

    Cort Phoenix Rising Founder

    Good to hear about Dr. Felsenstein. I hoped she wasn't aware of getting thunked over the head because of her negative results. I remember an encounter I had with Dr. Stein after her small study had failed to validate repeat exercise findings. I was so upset with her! Then I talked with her and turns out she has CFS as well and she was just as upset as I was!

    It's hard not to smear the bearer of bad tidings at times - even if it is unfair - that's for sure.
     
  9. glenp

    glenp "and this too shall pass"

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    I agree

    What is the insentive if the result is most likely negative?? I think that many who have fought for us have had personal reasons - why else would they do it??

    glen
     
  10. andreamarie

    andreamarie Senior Member

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    Since she was not the primary investigator in the Boston study, I don't think she takes it personally. She truly wants her patients to get better. She spent over an hr with me and was VERY thourouh.
     
  11. caledonia

    caledonia

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    Many of the negative studies I've read conclude that because it turned out negative (for both ME/CFS patients and healthy controls), XMRV is not associated with CFS.

    Which is ridiculous. I don't see how they can get away with saying that. They could just as easily conclude XMRV is not associated with healthy controls, or gee maybe we couldn't find XMRV because our methods were flawed.
     
  12. Cort

    Cort Phoenix Rising Founder

    I agree - this is not a popular field! This is not what most people would do to make a name for themselves (unless they are a CBT practitioner). They take a chance by doing them and they can't control the results of their studies...all they can do is get them funded and see what happens.
     
  13. Rrrr

    Rrrr Senior Member

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    thanks for telling us about yr appt with felsenstein. i have to say that when i saw her (twice this year) both times she rolled her eyes when i talked about xmrv. so she seemed very disbelieving of it. but she also seemed to not be keeping up with the literature. so maybe she read some of the studies and had a change of heart?
     
  14. andreamarie

    andreamarie Senior Member

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    I think she has a habit of showing emotion openly on her face. She said she was very hopeful of the results of Alter and Komaroff's study. She believes in it. But she also is wary of patients asking for antiretrovirals. She told me once she doesn't prescribe them. I said clearly I didn't want them, but she repeated it two more times. I don't know if she keeps up with the literature, but I could tell from the questions she asked she certainly knew about CFS symptoms, DOES NOT BELIEVE IN EXERCISE, and is also concerned about Lyme disease. She went over previous tests I had and questioned two results, repeated the tests and is sending me to another specialist. She called me at seven p.m. to tell me about an abnormal result and the appt she made for me. I've seen many, many doctors in forty four yrs and usually can tell pretty quickly if they care about me and are good. So far I'm pleased. She does talk to Komaroff so I assume she knows what's going on.
     

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