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New XMRV Fact Sheet from AABB

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by jspotila, Apr 20, 2010.

  1. jspotila

    jspotila Senior Member

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    The AABB (formerly the American Association of Blood Banks) has issued a revised fact sheet on XMRV. The pdf link to the fact sheet is here: http://www.aabb.org/documents/About_Blood/EID/xmrvfactsheet.pdf

    Bottom line looks to me like they are not banning CFS donors, except for those who are known XMRV positive. Someone with more functioning brain cells than me will have to parse all the differences out. I tried to catch all the places things were changed or reworded from the January AABB statement. Hopefully I got them all. Here is Before and After of each change:



     
  2. Gerwyn

    Gerwyn Guest

    developmental serological methods is a posh way of saying speculative and unproven Any chance of any details?
     
  3. jackie

    jackie Senior Member

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    Thank you Jennie! I think your "take" on this is correct! (in other words..."no big whoop!" - because of the inherent disabilities associated with being ill with me/cfs...the percentage of (infected) donors will be low? "we" (me/cfs) are already "discouraged" from being donors...and it will be up to individuals to decide...is that right?)

    I have an interest in this topic, as my husband (who appears to be free of me/cfs at this time) has the rarest blood type and previously donated blood quite frequently - and is now being asked by the Red Cross (several times) to donate platelets as well. Neither of us have been tested for xmrv.

    Thanks again for posting this! jackie
     
  4. V99

    V99

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    UK
    Off topic a little, but why the change from:
    to
     
  5. fred

    fred The game is afoot

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    Study of blood donors

    "Preliminary data from another study using developmental serological methods in a small sample of US blood donors found a seroprevalence of -0.1%."

    Which study was this?
     
  6. jspotila

    jspotila Senior Member

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    I thought is was very interesting that the reference to "affective disorders" (translation depression and emotional problems) was deleted.
     
  7. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    Thanks so much, jspotila, for doing the side by side comparisons. That is so very helpful.
     
  8. fred

    fred The game is afoot

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    And IBS added, another illness that is dismissed as being 'all in the mind' and not related to CFS.
     
  9. natasa778

    natasa778 Senior Member

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    Could be the one presented at CROI by Abbotts Labs?
     
  10. ixchelkali

    ixchelkali Senior Member

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    I find this both encouraging and discouraging

    There are things to like about it. My absolute favorite bit is where it says "CFS (also called, more descriptively, myalgic encephalitis)."

    The symptoms list is better than most; it mentions post-exertional malaise, and overall makes it sound serious. In the severity section it says CFS produces very significant disability with substantial disruption of activities of daily living among those meeting strict case definitions, so at least theyre not saying its too trivial to worry about.

    However, in the section on screening questions, it says No sensitive or specific question is feasible for CFS. How about, Have you been diagnosed with CFS?
    And then they say The rate at which potential donors carrying a criteria based diagnosis of CFS would present to donor centers is unknown, but probably low in light of the associated disability. In other words, theyre probably too sick to get to the donor center anyway. Thats probably an accurate guess, but I wouldnt want to bet the blood bank on it.

    And of course, the most discouraging part is that, while they do say that it would be prudent to defer those with an XMRV diagnosis, they dont think that prudence dictates deferring those with ME/CFS. It makes it seem as though they are more concerned with whether they could be held responsible for someone contracting the disease than they are about whether someone contracts it.

    In a way, I shouldnt mind; being deferred from donating blood might just add to the stigma ME/CFS patients already face. But I hate the thought of even one more person getting this, if it could be prevented. Couldn't they act, as the politicians say, "out of an abundance of caution"?
     
  11. Esther12

    Esther12 Senior Member

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  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Did I catch a subtle reference at the very end that CFS patients who are not healthy shouldn't donate? I think it says something about only healthy people should donate, which is their standard policy.

    So is this the way they will cover themselves? "Those CFS people shouldn't have been donating all the time, they were unhealthy."

    I also notice some reference to possibly that the virus is sensitive to heat. If that is the case, could this be part of the wait? They will announce it is in blood supply when they can announce they can eliminate it from blood supply?

    Am I just overly suspicious tonight?

    Tina
     
  13. CBS

    CBS Senior Member

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    My favorite:

    No mention of contamination or lab error (unless that goes under'other factors').
     
  14. JT1024

    JT1024 Senior Member

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    Massachusetts
    Good catch CBS! That tells me that they know XMRV is real and a potential threat to the blood supply.
     
  15. Gerwyn

    Gerwyn Guest

    It appears to be data on file using a highly suspect method which has not been validated in any way.strange that they chose to include this!
     

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