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ME/CFS: A disease at war with itself
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Today on Dr. OZ ~ EBV & Chronic exhaustion, cancer, etc.

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Koan, Feb 17, 2010.

  1. Koan

    Koan Be the change.

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    Dr. OZ today ~ now!

    Piece about EBV and chronic exhaustion, lymphoma, other cancers, etc...
  2. Koan

    Koan Be the change.

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    This is a good piece about herpes viruses and the impact they may have on human health. They mention not only lymphoma but the possiblity that MS may also be related to EBV infection.

    They describe a clinical picture virtually indistinguishable from CFS.

    They go into the reasons why Vit. D may be involved in development of illness.

    First 13 minutes of show.
  3. Lily

    Lily *Believe*

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    WOW, thanks Koan! I have heard of the possibility of MS being related to EBV infection, but not the part about the picture being virtually indistinguishable from CFS........
  4. Koan

    Koan Be the change.

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    Today on Dr Oz a piece about EBV infection and chronic illness, exhaustion, Lymphoma, Multiple Sclerosis, etc.

    Good piece in many ways. Clinically very similar picture to CFS/ME but distinguished by no mention of PEM and a few other cardinal symptoms.

    Good and sympathetic portrayal of condition of people who do not recover adequately, or at all, from EBV infection.

    First 15 minutes of show.
  5. Funkster

    Funkster

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    Koan - is this on the web as well?
  6. Koan

    Koan Be the change.

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    Uh oh, skill testing question!

    I don't know.
  7. Navid

    Navid Senior Member

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    anything about treatments for ebv
  8. Sacajawea

    Sacajawea slightly bedraggled

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    EBV

    Hi Koan!!:D
    Hi All,
    Darn, it already came on here and I wanted to see that show. It comes on right when my kids are coming home and I never thiink to just turn it on. I haven't been here much either, trying to deal with so many other things. I'm sure someone will post it on youtube, and will hopefully let us know! I am close friends with a family of six (parents and four children all in early 20s). They got diagnosed w/ EBV about 8 years ago when the oldest daughters were still in high school. The whole family had the active virus. All are impaired in some way or another, the father having to wear a mask out in public as he has MCS in addition.

    I asked them once or twice why the doctor distinguished this diagnosis as "just" EBV and not CFS (or ME which few doctors even refer that name in the US community). She said she didn't know. They have definite issues but have a better quality of life than others I know w/ the CFS diagnosis. The one I'm closest to just got married in September and is having a difficult time adjusting.

    I've always wondered what the differences are w/ all these infections. I've got EBV among other things but it wasn't discovered until years later. Is this the same virus that causes mono?

    SJ
  9. mezombie

    mezombie Senior Member

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    Of interest, the CDC originally viewed the mid-1980s "CFS" cluster epidemics as outbreaks of Chronic Epstein-Barr Virus.

    Here's the Holmes paper which became known as the first "CFS" definition.

    Note the lengthy explanation of how EBV couldn't possibly be a factor because testing "only" showed reactivation of a latent virus.
  10. Dreambirdie

    Dreambirdie work in progress

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    Thanks Koan, for posting about this. Just saw it, and am glad to see Dr Oz is empathetic re: EBV.

    I think we have a bit of ally in him.
  11. mezombie

    mezombie Senior Member

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  12. zoe.a.m.

    zoe.a.m. Senior Member

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    Thanks for alerting me to this Koan.

    It's a pretty heartbreaking segment, all in all (and a better view of CFS than the previous segment on CFS). What's terribly confusing about this is the difference between positive/titre tests for EBV versus what I'm understanding is perhaps a cellular change due to the EBV which would not necessarily show up as more than a positive past infection. Does anyone else have any better understanding of this?

    In terms of treatment, wasn't there an article posted within the last couple of weeks concerning a paper out of a med/research school that addressed treating EBV? I have had a difficult time remembering (visually--b/c that's how I recall things) where things are since the forums have changed, so I can't even recall the general area, but hopefully it will trigger a memory for someone else here.

    This seems to me to be as promising a method of potentially treating aspects of this illness as retroviral therapy. Of course, if I remember the other post correctly, it was about treating when EBV triggers cancer, so I don't know if it means CFS patients still would have to wait to develop cancer for treatment (!)

    It's good news that the importance of EBV is on the minds of the research community and apparently important enough to make it onto TV.
  13. mezombie

    mezombie Senior Member

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  14. mezombie

    mezombie Senior Member

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  15. zoe.a.m.

    zoe.a.m. Senior Member

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  16. gracenote

    gracenote All shall be well . . .

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    mezombie,

    Thank you for this.

    I couldn't open the link to the Holmes paper until I took out an extra http://.

    The 1988 Holmes Definition for CFS
  17. mezombie

    mezombie Senior Member

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    zoe.a.m. -- That's an interesting study! I would never have found it if you hadn't posted it. I do have high EBV Early Antigen titers, so am always interested in EBV treatments.

    gracenote, thanks for adding the proper link to the Holmes paper. I am still messing up on doing those hyperlinks! I interact on the computer out of necessity, even if it is difficult at best and sheer torture at worst.

    I've fixed the link to the Holmes paper in my post should people try to access it.
  18. zoe.a.m.

    zoe.a.m. Senior Member

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    It was August59 who posted the study results on a thread that can be found here: http://forums.aboutmecfs.org/showthread.php?2873-EBV-Study-News&highlight=Epstein barr --Thanks to August!

    I finally had a titer test done last year (after close to a decade) which just showed positive past infection, nothing current. Is that the same as a high "early antigen" result? I can't believe I still don't know the answers to these questions!

    Interesting stuff in the Holmes Definition...
  19. mezombie

    mezombie Senior Member

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    A lot of us test positive for EBV IgG but not IgM (Ig=immunoglobulin; antibodies produced due to an infection). Most docs consider positive IgG simply evidence that you were exposed to EBV at some point in the past. IgM is usually positive when you have an acute infection (like a case of mono).

    However, some docs, like Montoya and Learner, consider a positive IgG as evidence of a reactivated infection, especially if other parts of the immune system aren't working right (for example, you may have low NK (natural killer) cell function.

    I've read elsewhere that the EBV EA (early antigen) test results at present seem to be one of the best indicators of a reactivated past infection.

    (Thanks for letting me know August59 originally posted the EBV study and where to find the thread.)
  20. zoe.a.m.

    zoe.a.m. Senior Member

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    Unfortunately, I don't recall the EBV EA being in my panel... It's probably not standard I'm guessing?

    The info that IgG is evidence of reactivated infection is troubling. I haven't been able to find a doctor willing to run an NK test, so I don't have that to compare the other results with, which I'm guessing is the best way to tell if you might have an EBV-reactivation problem.

    I'm used to CFS testing being a bit of a mess, but you'd think they'd have better measures in place for dealing with EBV!

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