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WSJ / Amy Marcus / Unlocking Chronic Fatigue Syndrome MARCH 22, 2011

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by BobM, Mar 22, 2011.

  1. BobM

    BobM

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  2. Wayne

    Wayne Senior Member

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    Thanks for posting this Bob. Another great article by Amy; can't think of any other reporter who's working so relentlessly on our behalf. I especially like the following reference to central nervous system involvement:

  3. Enid

    Enid Senior Member

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    Thanks for posting BobM - very encouraging news. So happy to see it's a "race" to find now. (US of course never UK - home to biggest con artists). And quite agree Wayne - especially liking the "find" of aberrant proteins in the spinal fluid.
  4. eric_s

    eric_s Senior Member

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    Yes, a good article. Good to read that after the Mirror one. Would be great if we heard from all those groups mentioned in the article at the NIH Workshop.
  5. Boule de feu

    Boule de feu Senior Member

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    Now, you're talking! =-)

    How come this article is not on the first page of the WSJ?
  6. Bob

    Bob

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    This is a helpful article, although I think the first sentence might be a little over-optimistic and hopeful!:

    This bit is interesting... Testing for all known 'agents' that affect all vertebrates. I wonder if it's been done before? It could throw up some interesting and unexpected results:

    As far as I know, Komaroff and Huber have not actually ever detected XMRV or PMRV's, and so I think this study will be a waste of time, judging by the difficulty of detecting the viruses, and how many researchers have actually detected XMRV/PMRVs so far. (It's interesting that Huber is involved because she couldn't detect XMRV when she tried to, and decided that her positive readings were due to contamination.) I think Amy is referring to the Alter/Lo study, because some of their samples were from Komaroff's patients:

    It's good to see that gene expression research is getting results:

    Whatever happens with XMRV research now, I do tend to agree with this statement:

  7. Bob

    Bob

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    The CAA sent out this message in their email newsletter:

    So there's a second (short) article about CFS in the Health Blog of the WSJ today, here:
    The Hunt for the Biological Causes of Chronic Fatigue Syndrome.
    http://blogs.wsj.com/health/2011/03...iological-causes-of-chronic-fatigue-syndrome/

    And there's an online essay by Molly J. Billings about her life with CFS, here:
    Molly J. Billings about her life with CFS.
    http://online.wsj.com/article/SB100...%7Cfile%3Dmollyscfsstory&articleTabs=document
  8. Jemal

    Jemal Senior Member

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    If you look at it positively, you could say: "Amy is great, she is trying to understand our disease and she will keep covering the story."
    If you look at it negatively, you could say: "Amy is losing faith in the XMRV connection and she's covering more aspects of the disease, so that if the XMRV link gets disproven, it's not only XMRV articles she has to her name."

    Whatever I think, I am very glad with this article and her continued investigations.
  9. Bob

    Bob

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    Or the way I was looking at it was...
    Amy is aware that there is a possibility that XMRV might not lead anywhere for ME...
    But while she was covering XMRV, she learnt so much about this neglected illness, and its history, and what the patients have to endure, and she didn't want to stop covering the subject even if it turns out that XMRV leads nowhere...
    So she's going to stay with us, whatever happens.

    I'm so grateful to her!
  10. Jemal

    Jemal Senior Member

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    I definitely hope it's something like this. I made a black & white statement, but there are many shades of grey.
    Whatever it is, I am very glad she keeps writing these stories.
  11. Bob

    Bob

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    Me too! :thumbsup:
  12. Timaca

    Timaca Senior Member

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  13. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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  14. urbantravels

    urbantravels disjecta membra

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    Whatever the reasons she has for broadening her focus, it can only be beneficial to us. If XMRV washes out, there will still be awareness of the other promising lines of research. If XMRV doesn't wash out, well, we still need the other lines of research to increase our understanding of the disease, not to mention the fact that some of the other research might bring us more benefits more quickly than XMRV. If XMRV is a go, it'll take quite a long time for treatment regimens to get tested adequately, verified, and approved.

    And the thing we *really* fear - that if XMRV washes out we get tossed back in the "psychosomatic" wastebasket - is less likely to happen the more aggressively the other lines of research are pursued, and their findings widely publicized. I would like, I would really really like, to think that the re-wastebasketing can't happen at this point, when the information is so widely out there about the other physical abormalities being found in this disease.

    It's my feeling that Amy's editors are giving her such free rein with this story because they are hoping to put her up for a Pulitzer. She already has one, after all. I do not doubt that she is a compassionate person who cares about the suffering of PWCs, (and her previous Pulitzer was for coverage of cancer issues, including its impact on patients, so she certainly has a feel for this type of subject), but I don't think the WSJ is giving so many column-inches to her coverage of ME/CFS out of kindness. Publishing such big stories is a business decision, and I don't think it's 100% motivated by the business implications of new ME/CFS tests and treatments coming on line, although that's certainly a part of it.

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