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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Suspense. Any news on WHEN the NIH/FDA study might come out?

Discussion in 'XMRV Research and Replication Studies' started by FernRhizome, Jul 22, 2010.

  1. V99

    V99 *****

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    A doggy CFS tail
  2. SOC

    SOC Moderator and Senior Member

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    I'm hangin' with George on this (if he doesn't mind the virtual smell of my 5 cats).
  3. George

    George waitin' fer rabbits

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    (big grins) Sure, sure bring the cat's . . . I like cat's (drool, drool)
  4. V99

    V99 *****

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    And sheep, and rabbits, and badgers
  5. SOC

    SOC Moderator and Senior Member

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    :eek: [Trying to herd cats out of the room]
  6. George

    George waitin' fer rabbits

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    heeheheh, dang and I thought I was going to have "Cat"-onoli for dinner. (grins)
    I would never eat rabbit though. Denn would wup my tail!
  7. julius

    julius Watchoo lookin' at?

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    A little kitty-'scetti anyone??
  8. George

    George waitin' fer rabbits

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    ar, ar, ar, snort! Well at least we're passing the time till the paper comes out. (big grins)
  9. Lynn

    Lynn Senior Member

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    I posted this in another thread but thought I would cross post since I think itis pertinent.

    I guess I am pretty lucky. My GP is in the Davenport, IA area. Louis Katz, the member of the AABB task force that made the recommendation that CFS patients not donate blood is also in Davenport so the CFS blood "ban" story made the local newspapers.

    My GP told me that many of his patients that have a fatiguing illness are already asking about XMRV after reading about it in the newspaper. He was totally open to the possibility that XMRV could be responsible for CFS. I think this will become true for most physicians as the story hits the main stream news.

    Lynn
  10. Sean

    Sean Senior Member

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    I agree with Tina & George.

    And very nice summary, Tina.
  11. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    George, if you're right, I will clean-up after your dog for a year, I always have plenty of Food Lion bags handy!
  12. knackers323

    knackers323 Senior Member

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    anyone heard anything new on this? they just keep drawing this out.
  13. FernRhizome

    FernRhizome Senior Member

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    I am wondering too!!!!
  14. VillageLife

    VillageLife Senior Member

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    what day does the journal publish again ?
  15. markmc20001

    markmc20001 Guest

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    here is a thouht

    Dr Reeves? predicted the the CDC would not find XMRV right of of the gate, if I rememeber corrrectly?

    Dr Reeves may have been familiar with the CDC policy of just plain ignoring CFS, and with the current leadership he is familiar with, figured that wouldn't change.

    However, along comes DR ALter(A big shot with power) who believes in this XMRV thing and wants to solve it, and has power over the NIH. Bang! DR Alter finds it. OH SHIT!!! a big controversy makes it to Katerine Sebilius's desk over the conflict between the CDC and the NIH. (the head of HHHS, who has been appointed by Barack Obama I believe) Barack throws his weight around, but can only go so far with this secretive and powerful thing called the CDC. (Barack is an idealist to a fault, and prefers not to kick the can down the road, totally against american tradition....) SO grudingly, they all agree to let the CDC thing out to quash things for awhile, by releasing this bogus negative study, but in the mean time Alter is allowed to go back and prove what the prevalence may be.( Barack ordering studies and opinions). Example, remember how Dr. ALter mentioned, it may move up on the the to "do list"?, "radar"? (or something to that effect as seen in another post n here somehwere) if XMRV is in CFS patients?. I think he can prove it, and then some. He can probably create some statiscal data to shoow the likelyhood of this causing CFS. Which will probably be quite high based on the WPI 60%-97% findings.

    So They are all figuring out the ramifications on blood, economy, politics, and message to public.

    This whole thing caught Barack by suprise, and he CDC for that matter, becuase the environment of kicking the can down the road is changing under Barack.

    I think it will come out, may take a little longer than some hope. But on it's way for sure
  16. V99

    V99 *****

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    Well, it could even be today. We are now in a holding position boys and girls.
  17. Levi

    Levi Senior Member

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    Holding pattern?

    To me, the whole Alter paper thing smacks of a set-up for disappointment for the CFS/ME community. Dr. Alter is not a CFS/ME expert, and his apparent co-author Dr. Lo has worked with CFS patients, sure, but I can only find stuff on the net in that regard for weaponized brucella and military patents relating to scary creepy stuff about mycoplasma microbe research he did on CFS from decades ago.

    It makes no sense to pin all hopes for clarity on an unpublished study that has also been effectively quashed at the highest levels of government. Without that study, all of the published zero/zero studies pretty much leave XMRV research stranded in the hinterlands.

    Perhaps its time to just let XMRV go in terms of looking to a retroviral pathogen being connected to CFS.


  18. ukxmrv

    ukxmrv Senior Member

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    That's not likely with all the people being tested and found positive. Also the potential and current research projects and all the "behind the scenes" news.

    too soon to call the final whistle on XMRV and CFS.
  19. SOC

    SOC Moderator and Senior Member

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    I believe the last issue was 23 July, so the next should be 30 July.
  20. SOC

    SOC Moderator and Senior Member

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    I don't expect to see it sooner than mid-August simply because of the publication logistics.

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