The 12th Invest in ME Conference, Part 1
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Cdc -- those with cfids: "prudent to refrain from donating blood"

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by bullybeef, Jul 4, 2010.

  1. bullybeef

    bullybeef Senior Member

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    This is old news, but has anyone seen this before? Scroll down to the letters, shocking stuff. Maybe an idea to send these to Amy, and Mindy?

    http://www.cfs-news.org/joan.htm

    If anyone can decipher the handwriting on each letter, it would be very helpful.
     
  2. bullybeef

    bullybeef Senior Member

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    Also see: http://www.ncf-net.org/forum/revelations.html

    [Ed. Note: Dr. DeFrietas presented much of this work at the Albany Medical Convention in 1991. She also submitted a paper of the work to the PNAS three times but was turned down. Why? Were the same people at the NIH who refused to fund her threatening the publication in some way? The refusal to fund her along with the CFIDS Assoc. pulling her funding lost us more than a decade of work!]
     
  3. onebush

    onebush Guest

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    Why, why why is the question. There has been some sort of cover up since the 90's. I thought Hillary Johnson was way off base but now I believe everything she has written. I also think that De Frietas was shafted for lack of a better word. Why again, do they want a us all to stay sick and more get that way? We will persevere and win! It will take time but it is coming, hang on all! I had an an 8 year remission and it is back, not as sick as the first time but that sounds like a virus to me. I see Klimas on Friday.
     
  4. Otis

    Otis SeƱor Mumbler

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    Thanks for posting Bully.

    The writing on letter one (from Reeves) reads "I ask: Why is this information not being shared with the American public. (Signed) Joan L. Irvine 6/13/92"


    The writing on letter two (from Rutherford) reads "To be on the safe side, to protect the health & economy of our nation, what harm could possibly be done by making this information available to the public? (Signed) Joan L. Irvine 6/13/92"
     
  5. glenp

    glenp "and this too shall pass"

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  6. shiso

    shiso Senior Member

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    Wow. These words from Reeves' letter from 1992 giving CDC advice to a patient really shocked me (transcribing from the letter image):

    "Since the etiology of CFS is unknown and since it may represent a general symptom complex due to a variety of causal factors, there is at present no CDC policy concerning donation of biologic products such as blood by CFS patients. However, since ongoing research indicates an infectious agent may be involved in some cases of CFS it would seem prudent to refrain from donating blood until this issue is resolved. In any event, you should consult your local doctor concerning his or her opinion with respect to effects this may have on your health. You should inform officials at the blood collection center that you have CFS; the blood bank may have specific regulations concerning CFS or similar diseases."

    Reeves/CDC is very clearly recommending this patient to refrain from giving blood. Yet, he apparently was not making any recommendations within the CDC or otherwise to send that message out to other "CFS" patients in the form of federal policy or even as a guideline or recommendation to doctors and blood banks. Using his own logic expressed in the letter, CDC (knowing at the very least that "ongoing research indicates that an infectious agent may be involved," knowing that viruses like EBV and CMV were activated in patients) taking such an action would have been the "prudent" thing to do.

    Yet he preferred to rely on the chance that local blood banks would refuse blood from patients like Ms. Irvine via general screening criteria for not accepting blood from people who weren't well (similar to the answer that Jerry Holmberg, the blood bank guy who testified at this year's CFS federal advisory committee meeting gave in response to the question, "what's the harm in erring on the safe side?": blood banks usually ask people "are you feeling well today?").

    Reeves is recommending this patient to consult her local doctor and blood bank (who likely knew jack about "CFS") to make that critical decision - instead of erring on the side of the safety of public health, he decided to err on the side of not risking the potential public panic that a blood ban (or even something weaker like a specific guideline or a recommendation to blood banks) might provoke.
     
  7. bullybeef

    bullybeef Senior Member

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    Isn't it an interesting coincidence that PNAS were involved all those years ago, and rejected Dr. DeFrietas paper THREE times. And also that her funding was cut by the CAA themselves.

    Talk about history repeating itself! I have sent these links to Mindy at CFS Central. It maybe interesting to hear the CDC explain those letters. And it may discredit Reeves even more, making his recent CDC negative paper even more biased and tarnished.
     
  8. taniaaust1

    taniaaust1 Senior Member

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    Yeah the blood letters, i see those as a famous part of CFS history. It was those letters which finally stopped me from donating blood many years ago. (im of viral onset and donated blood up to 3 times since ive had CFS).
     

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