Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

CDC's Response to Question About Blood Donation, XMRV & CFS

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by ixchelkali, Jun 29, 2010.

  1. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    274
    Long Beach, CA
    I recently sent the the CDC an e-mail inquiry about their XMRV Question & Answer webpage, specifically about the question "Should an individual with diagnosed chronic fatigue syndrome donate blood?" Here are my original e-mail to them and their reply:

    My Question:

    CDC's Reply:
     
  2. CBS

    CBS Senior Member

    Messages:
    1,502
    Likes:
    845
    Is this true?

    Here's the link to the AABB recommendation: http://www.aabb.org/pressroom/Pages/cfsrecommendation.aspx

    The AABB "intends to prevent" CFS patients from donating.
    Blood donation sites are to use "donor information materials" to "actively discourage" donations from CFS patients.
    Blood donations sites must follow all Federal regulation
    So far, there are no federal regulations specific to CFS

    Technically it's true we are not being asked if we have CFS but instead we're being told that if we have been diagnosed with CFS to not donate.
    The last two bits don't tell me anything. What other guidelines do the donation sites typically to follow? Are there other rules they are required to follow?
     
  3. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    oh my goodness when are these people going to give us the respect we deserve!
    When are they going to start talking straight.
     
  4. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    I think they are saying that they should show the donor the material, and if the donor volunteers the information that they have CFS then they should be discouraged. But they are not asking the specific question "do you have CFS?"
     
  5. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    274
    Long Beach, CA
    Yeah, the way the CDC put it, "blood donors will be given educational materials and discouraged from donating if they recall that their physicians have diagnosed them as having Chronic Fatigue Syndrome" doesn't sound much like actively discouraging people from donating. Waiting for them to mention it sounds distinctly passive, in fact.

    I wonder whose version is closer to the true story? Was the AABB press release and/or recommendation just a feel-good PR bit? Or is the CDC reluctant to tell ME/CFS patients that they shouldn't donate blood because it might imply they are physically ill? Or both?

    Meanwhile, I'm trying to picture an ME/CFS patient who doesn't recall being given that diagnosis? Like, "Oh yeah, it slipped my mind that I've been ill and in pain for 10 years." I know that I've got some memory impairments, but I'm reminded of that often enough that I'm not apt to forget!
     
  6. V99

    V99

    Messages:
    1,471
    Likes:
    5
    UK
    The CDC are playing games with semantics. The fact that no one has changed this information on their website clearly demonstrates their disbelief in CFS, and any possible connection to a biological cause. There is no way they would not have known about AABB recommendation, or their current XMRV page. They are probably quaking in their boots right now. Serves them right, the ignorant fools.

    I guess the CDC thinks you can look at someone and see if they have CFS. Yes, now what is it again, blue hair, red back, blond pigtails. Yes, lets rely on the patient population to protect the blood supply and their CDC asses.

    Sorry CDC but your time is up.
     
  7. V99

    V99

    Messages:
    1,471
    Likes:
    5
    UK
    What happens if one of them needs blood?
     
  8. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    274
    Long Beach, CA
    We can save that threat for when we want something REALLY big from them, like research funding or treatments.;)

    I believe they're right about our integrity. Those of us who have this disease don't want to give it to others. But not all ME/CFS patients are tied into the patient groups for news. Some of them rely on sources like the CDC website, or on doctors who get their info from the CDC website. Probably the more seriously ill aren't donating blood, because they can barely get through their day. But some of the higher functioning patients, or those who have largely recovered, may still be trying to do their bit to help society by donating.

    Meanwhile, until the research is published, the people in charge can avoid action, can avoid responsibility, by saying "we didn't know." As more lives are demolished.

    I guess we'll just have to see what the FDA says when their study is published. Waiting, waiting, waiting...
     
  9. jimbob

    jimbob ME/CFS84-XMRV+

    Messages:
    321
    Likes:
    9
    myrtle beach, s.c.
    The CDC is the biggest embarrassment to this country and it's only going to get worse!
     
  10. Tammie

    Tammie Senior Member

    Messages:
    761
    Likes:
    20
    Woodridge, IL
    Yeah, that phrase sure caught my attention, too.....if they recall - oh brother!
     
  11. jimbob

    jimbob ME/CFS84-XMRV+

    Messages:
    321
    Likes:
    9
    myrtle beach, s.c.
    Well. I got that one right unfortunately, they've freakin embarrassed us again!!!!
     
  12. bullybeef

    bullybeef Senior Member

    Messages:
    488
    Likes:
    138
    North West, England, UK
    This is becoming a running theme. Like here in the UK, people with ME are deferred but not publicly, or officially. They (the CDC & UK DOH etc) will not issue a statement of admission that ME is in all probability transmissible via blood transfusions. If they do, they a admitting mistakes have been made in the past.

    Their sole purpose is the save face, and not to protect the blood supply.
     
  13. *GG*

    *GG* Senior Member

    Messages:
    6,111
    Likes:
    4,693
    Concord, NH
    What do you mean it's only going to get worse?
     
  14. justinreilly

    justinreilly Senior Member

    Messages:
    2,496
    Likes:
    1,214
    NYC (& RI)
    Jerry Holmberg "the federal blood guy" already admitted at the May 2010 CFSAC meeting that XMRV is now in the blood supply. He volunteered something like "it would be foolish to think that XMRV is not in the blood supply".

    The only explanation for the XMRV blood working group not recommending a ban on ME patients is (1) the group doesn't believe that XMRV is in ME more than normals or (2) the believe XMRV IS in ME but they are part of the cover up/ they care more about avoiding 'alarm' and questions in the short term than public health. Given the NIH/FDA findings, it has to be (2).

    Apparently the working group has come under some strong influence- probably Reeves, Fauci, Hanna etc. insisting up to them it's all BS. This tactic has always worked for them so far. But now with the NIH/FDA study results, it's clear that it's gone beyond the blood working group having the wool pulled over their eyes by the usual criminals. It's clear the working group has always known about the conspiracy and supports it or they have been seriously threatened by Fauci, and who know who else, not to act.

    The blood working group may be a weak point in the conspiracy though, as these people are, I'm sure, a lot less committed to it than the likes of Reeves and Fauci. I think we need to keep the pressure up on the group and it's upline chain of command and maybe someone will crack at somepoint and be a whistleblower (but i guess we should be careful what we wish for as we've already got an official 'whistleblower' in Reeves- what a travesty!) as more and more info comes out.
     

See more popular forum discussions.

Share This Page