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FDA/NIH Paper will be published

Discussion in 'XMRV Research and Replication Studies' started by Mindy Kitei, Jul 9, 2010.

  1. Bob

    Bob

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    It's interesting that the CDC look as if they are now trying to make it look like the WPI are testing an entirely separate disease to what the CDC have been investigating all these years...
    But will they get away with this, I wonder? The WPI (and now the NIH/FDA) tested CFS/ME patients as diagnosed by the Canadian Consensus definition, which diagnoses 'ME'.
    So are the CDC now going to try to make the case that they never had a department for 'ME', and that they only ever had a department for 'CFS' which is an entirely separate disease?
    Can they get away with that? They probably can get away with it, but the CDC has been dealing with classic ME cases ever since the original outbreaks which they were sent to investigate.
    It's going to be interesting watching the CDC unravel, or tie itself in ever increasing knots until it strangles itself!
  2. bullybeef

    bullybeef Senior Member

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    Maybe this is how they were able to pluck a new name for nowhere without the WHO getting too deeply involved (although I did hear the WHO weren't happy with the CDC, or Wessely & co in the UK). They probably told them that CFS is similar to ME, but it was a somatoform disorder, and not a physical one?
  3. VillageLife

    VillageLife Senior Member

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    I've said this before, when they put me in a psychiatric hospital (where I nearly died because they didn't believe I was ill.)
    There were people in the psychiatric hospital that were told they had CFS/ME (But they didn't) they had some kind of mental illness and within a few weeks, sometimes months, these people would crack and say they weren't really ill, they were pretending! I feel sorry for these people but they are given the same diagnosis as us and this has clouded the water.
  4. Angela Kennedy

    Angela Kennedy *****

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    Could I ask where the source is for the statement "Science mag wanted WPI to drop the CFS as part of their paper. But they refused" please?
  5. Bob

    Bob

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    Hi George,
    I tend to agree with your analysis, and your conclusions...
    It's early days yet, but your outlook is exactly where I see it all heading...
    I think the NIH/FDA study might be the turning point for us... in a very big way!
    And there is so much more going on behind the scenes, with regards to XMRV research, that has been hinted at, and that we know is in the pipeline... Projects that even the CDC can't hold back... I think that some elements of the CDC are unsuccessfully trying to hold back an incoming tide...
    Like you, i'm going to sit back and enjoy it, when it happens... There does seem to be a certain amount of hope and optimism on the horizon, at least in the little world that I inhabit!
  6. bullybeef

    bullybeef Senior Member

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    It was said anecdotally by Annette Whittemore, I think, can't remember would I heard or saw it myself now.
  7. bullybeef

    bullybeef Senior Member

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    Found it: http://www.ei-resource.org/columns/phoenix-rising/xmrv-in-the-spotlight/

    Good Science! - He was excited. There have been some questions about the demographics side of the study but the science side was better than we patients could tell. Annette Whittemore said that the Science paper didnt get easily; Science wanted the virus story but not the CFS part of it. After the WPI dug in their heels and said youre not going to get one without the other Science made them jump through hoop after hoop. Their ability to do what they did surprised alot of people.
  8. Sean

    Sean Senior Member

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    Been waiting a long time for this show. [grabs popcorn, settles down in comfy chair]
  9. muffin

    muffin Senior Member

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    USA!
    Villagelife: This blows my mind!

    I am so very sorry for you and the rest of the UK ME sick. This cruel treatment of the sick has to end and I believe it will shortly. Once the US sociopaths have been shown to be wrong and covering something up (or not), that will give the UK people and health orgs a lot to re-think about.

    Keep banging the drum. Keep emailing the US sociopaths and your own government. You have a new PM, maybe HE will listen. His wife is about to have a baby and he should think about the blood supply and the possible need for blood for his wife/child during/after childbirth. A new baby puts priorities into order. Hit 10Downing over and over about ME and XMRV. Also hit the US Feds (emails have been provided all over this forum) so that the US can be fixed and lead the way for the rest of the world.
    Again, very sorry about your stay in that ward. I just can not believe that the UK health care system is acting like the old Soviet Union. But this would be typical of those that contradict the "powers that be" or Weasel, White and the other sociopaths.
  10. anciendaze

    anciendaze Senior Member

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    XMRV and the blood supply

    With a study in Japan showing a 2% background rate of XMRV infection, and a very different study in Germany showing 3%, the 3.7% rate in the Science paper looks right in line. Gross errors alleged by critics are unlikely to produce such consistency.

    The leaked presentation by Dr. Alter put the rate of incidence in the general population between 3% and 7%. I suspect this, more than anything to do with CFS, was the trigger for the attempt to suppress or delay his paper. CFS was merely the point on which he was considered most vulnerable.

    This crisis in the blood supply is coming at a time when blood banks are vulnerable. I just found references to a serious scandal in Florida. This is not simply a local spat, the FBI was involved. Expect the kind of organizational culture which produced this to have effects elsewhere. The idea of people selling donated blood, and giving themselves big salaries for doing so, will not sit well with the public.

    Another point gleaned from that debacle is that most of the cost of providing blood is now due to testing. I think the relevance of that to a need to test for additional pathogens is obvious. A correlation between XMRV and a very common cancer in males, which jumped in frequency during the period in dispute, is enough reason for caution in an uncertain situation. If CFS did not exist, this would still be a national and international crisis.
  11. redo

    redo Senior Member

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    Good points anciendaze.

    I'd say you could subtract some from the NIH/FDA number, because they wrote about XMRV and other MLVs. So that makes the numbers even more even.
  12. Alexia

    Alexia Senior Member

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    Very good reasoning anciendaze!
  13. Bob

    Bob

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    Ah, that's an interesting thought... maybe this might explain why the NIH/FDA study reportedly found XMRV in the blood supply at "between 3 and 7%"?
    I have been wondering why this wasn't a definite figure, as it seemed like a strange conclusion to make (you either test a sample positive or negative for XMRV - there shouldn't be any 'inbetweens').
    Maybe the NIH/FDA paper has found a definite 3% XMRV infection in the blood bank, and another 4% of other possible MLV-like infections which haven't yet been identified?
    This is very interesting. Judy said that she was looking for other strains of XMRV. Maybe this explains why only about 50% of us are testing XMRV +ve? Maybe the other 50% of us are infected with another MLV-like virus or another strain of XMLV? This would fit with the reported 3% and the 7% figures from the NIH/FDA paper (3% is roughly half of 7%) which might indicate that 50% of retro-viral infections in ME are not currently getting picked up by XMRV tests.

    (I'm just thinking out loud here, and speculating.)
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Thank you others for giving the reference. I just can't keep up with everything that has been said, when it was said and who said it over the last nine months. Relatively speaking, things have been happening fast with a sudden increase in webinars and videotaped presentations even by long-time CFS researchers.

    All I knew was that it was someone at WPI who said it in a news report or a video presentation.

    Whew. Y'all saved me from hours of looking for that quote.

    Tina
  15. Sasha

    Sasha Fine, thank you

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    They might be giving the 95% confidence interval for their population estimate, as would be normal for such a study. They'll have observed, say, 5% in their study and then quite likely they'd apply a statistical formula to show how much error there is likely to be in that estimate when scaled up to the entire US population. Typically, they give the range that is 95% likely to contain the true population value. A small scale study can't give an accurate estimate for a larger population.
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    In the short term, they will not be able to disassociate CFs from XMRV in the public consciousness, if the WPI / FDA / NIH findings continue to hold up.

    Long-term, if XMRV+ people get a new name, then eventually they will not have CFS, they will have something else. So the association between XMRV and CFS will slowly leave the public consciousness.

    The way the news media reports it is the way it will be perceived. And perception is reality. Since the studies say their findings are in people with CFS, that is the way the news media will report it, just as they have been up until this point, thanks to WPI insisting the "CFS" words be included.

    So the story of CDC missing the virus in CFS people is an issue that can easily be understood and reported and investigated, until the name changes for XMRV + people.

    After the CFS and XMRV+ connection is established, worldwide (since each country will no-doubt test their own CFS patients) then the studies will be of XMRV+ people, not CFS people as to whether they have XMRV.

    Right now, they are looking at who has it. And the CFS connection is going to be in scientific papers and in news media. When they change to looking at what it does in people who have it, there will be a shift, and likely a new name.

    Remember, CDC established that people with a biological explanation for their symptoms don't have CFS. So, CFS will likely continue. Isn't it great the CDC has taken the lead in researching these people who are tired and don't have a biological explanation for being tired. In fact, you know, they seem to be taking the lead in researching these folks.

    Problem is, they have completely ignored the other folks, those of us with a retrovirus that has been passing it on to many others, causing disability by the millions.

    I suspect the quickness with which the shift occurs from CFS being associated with XMRV to being solely those people CDC want to study will all depend on when we start seeing the new name appear in studies.

    I don't believe that will occur for a couple of years since we have many countries that need to test their CFS folks to see if the association holds up. As Coffin said, we are in very early stages.

    Tina
  17. usedtobeperkytina

    usedtobeperkytina Senior Member

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    That then leads to a big PR strategy that CDC could use, if they were smart. Within two weeks, do some studies and find some XMRV positive folks, using a method that works. Hold a press conference and announce a new virus that likely causes disease has been discovered and confirmed. Point to Silverman's experiment on prostate cancer. Give it a new name saying it might lead to other illnesses besides prostate cancer. Mention possible symptoms (but never say CFS). Say it is likely in blood supply, but tests are available. Blood supply being tested now.

    "Does this cause CFS?" says reporter number one.

    "According to a long-standing definition, CFS does not have an objective biological cause. So those who have XMRV may have been misdiagnosed as CFS, since the world was not aware of this virus until recently. They also may have been misdiagnosed as having fibromyalgia, depression or multiple sclerosis. Studies are ongoing into these matters as to who is likely to have this virus and whether it is seen at a higher rate in people who have other cancers." says CDC spokesman.

    They can change the terminology to their own purpose if they would only get ahead of the story instead of allowing others to write the story.

    (CDC PR department. I am sorry, I am not available for accepting a job right now, in case you liked my proposal. I am dealing with the fatigue I feel because my mom spanked me a few times when I was growing up.)

    Tina
  18. Lynn

    Lynn Senior Member

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    I think you hit it spot on, Tina. We were misdiagnosed. That will probably be their story.

    I personally think that I have a classic case of CFS and will end up being XMRV positive (but I am also sure I too suffered some kind of abuse as a child, so who knows!). But whether I have XMRV or not, I know I am going to make a commitment to help those that have CFS with biological abnormalities like PEM and tender lymphnodes but do not have XMRV. That group must not be left behind! If one retrovirus could do this, we have to keep looking for other physical explanations for those that do not end up XMRV positive. It would be positively wrong to leave that group under Reeve's thumb.

    Lynn
  19. Bob

    Bob

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    Ah, I see, it could be statistics... Extrapolating a small data set to the entire population... Thanks for that Sasha... I've never been able to get my head around statistics!
  20. Sasha

    Sasha Fine, thank you

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    It's spelling it that I can't do (you'll notice that I edited my post!).

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