Blood and Organ Donations

Discussion in 'Fibromyalgia Main Forum' started by jasminetee, Nov 6, 2009.

  1. jasminetee

    jasminetee Member

    I'm currently watching the CFSAC and keeping an ear out for these topics:

    Dr. Dan Peterson talks about XMRV contaminating the blood supply at around 1:49:00 on Day 1 and the legal implications. He has a patient who got CFS after a blood transfusion and was able to track down the donor and is going to test that person for XMRV.

    He says they have cohorts of patients who became ill with CFS after getting blood transfusions and that two lawyers have already contacted him who had worked on cases of HIV being transmitted through transfusions. Leonard Jason also said that he has plasma of a patient pre-blood transfusion and post-blood transfusion and they're planning on testing those too.

    Day 2 2:02:00-- Jerry Holmberg Senior Advisor for Blood Policy within the office of the Public Health and Science speaks to the CFSAC. He says they understand the disease process of CFS (which is amazing with all the misinformation put out by the CDC, maybe they just think they understand it.) He does state that they probably don't know the disease process of CFS as well as we do.

    He said he was going to make a prepared statement to the CFSAC that had been coordinated throughout the entire HHS. Apparently they were sending flurries of emails back and forth about XMRV the night before.

    He said a majority of them had just gotten back from the American Association of Blood Banks Meeting in New Orleans and XMRV was a major topic there. He says that they are unaware of CFS being contracted after blood transfusions. Boy, are they out of it!

    They are concerned now thanks to the WPI because XMRV is transferred through white blood cells. He said the HHS and other organizations are taking steps now to ensure that the blood supply is safe from XMRV and that they do white blood cell removal which is performed on approximately 70% of the blood products. This is called Leukocite Reduction.

    The Senior Advisor for the blood supply then speculates that XMRV may be transmitted through the plasma in which case Leukocite Reduction will not help at all. Dr. Papernik then points out that Dr. Peterson just showed slides on Day 1 explaining that XMRV is transmitted through plasma.

    Then Wanda Jones tells the Senior Advisor that he can meet Dr. Peterson and Anne Whittemore as they are sitting right behind him. So Dr. Oleske says, “It would be great if you could shake hands with them.” And everyone is smiling as they realize the implications of this. (And my mind is screaming: 'It should have been Elaine DeFreitas 25 years ago!!')

    The Infectious Disease Agency is now studying XMRV in relation to the blood supply and a report is due within weeks. HHS will remain vigilant in testing the blood supply and will develop interventions as appropriate.

    Well, thank goodness! Gee whiz! It took 'em long enough! Grumble, grumble, grr CDC...

    Then Rebecca who speaks for the patient population asked the Senior Advisor if he could put a notice up on the CFSAC website stating that PWC should not give blood if they determine that we could be contaminating the blood supply. He says he'll be collaborating with his people about that and doing appropriate PR through the World Health Organization.

    Then Rebecca brings up organ tissue donations on your Driver's license. Personally, I've been suffering so greatly I know not to be a donor. The only donation I want is to give my body to the WPI or someone like them that wants to study it for diseases.

    The Senior Advisor says he cannot state right now whether or not PWC should be donors. If you have severe CFS you know the answer. I just can't believe this. This doesn't have to do with XMRV, this has to do with the fact that CFS or FMS or any other invisible illness might be contagious through the blood and organs and internal tissues, we don't know.

    I'm angry that they aren't already being definitive about this especially now that they know about XMRV. Our government has failed us in the past and it's continuing to fail us. If they had just listened to the patients and the doctors who supported us from the beginning back in 1985 countless numbers of people would have been spared the horrors of living with CFS.

    And the band played on....

    [This Message was Edited on 11/06/2009]
  2. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    They have to walk a thin line. Remember, this guy does not work for Red Cross. And if he makes a warning statement, then Red Cross (which is run more like a business than a non-profit) will be hurting and be mad. Last thing they want is for the blood spicket to slow down.

    And, I think you may have missed this, but they don't have the test yet. But they expect it within the next couple of weeks. They want to use an FDA approved test.

  3. jasminetee

    jasminetee Member

    Tina- I see what you're saying. So maybe I shouldn't be mad that they aren't being more definitive. But I am... I'm angry that they never took CFS seriously and still aren't.

    They should have made statements long ago about not giving blood if you have CFS. If they hadn't squelched the research back in the 90s they would have known they should. But even back in the 80s they should have said, "This is a bad illness, we don't know what's causing it but it's occurring in outbreaks and is acting like a virus so don't give blood or donate your organs until we figure this out."

  4. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Well, now, there is obviously a need for an investigation. And if negligence or criminal activity is discovered, then it should be dealt with.

    But I have seen this before in other situations. Government bureaucrats go into their own government world and become disconnected from the people and the effects of their decisions. I have seen this many, many times.

    I will give you some examples......
    What year was hurricane Katrina? And how many people have gotten their house rebuilt? The decisions of the mayor of New Orleans to not use the buses when the threat of the hurricane was imminent led to people dying.

    A man who sued me, they started investigating him in March of 2008. He was indicted in April 2009. And it is now November 2009 and he is free and no trial date has been set yet.

    I was reading some of Osler's Web to my husband. And when I read to him the response from local health department and the CDC, he said that something similar happened with HIV. And you will notice that the chairman at the CFSAC kept referring to not having the same thing happening that had happened with HIV. And he wasn't the only one who acknowledged the failure of the blood bank people to respond.

    So we are not unique. Is it right.... No. Should something be done about it.... Yes.

    But it is not malicious against us.

    [This Message was Edited on 11/08/2009]
    [This Message was Edited on 11/08/2009]
  5. jasminetee

    jasminetee Member

    Right. I agree this kind of thing happens a lot in government, I know it's not happening only to us.

    The book and movie "And the Band Played On" is about the negligence of the Govt. not protecting the blood supply from HIV once it was discovered. That's what your husband is referring to. That's why I wrote "And the band played on" at the bottom of my post. The govt. did this with HIV and they did it with CFS by not believing that DeFreitas actually found a retrovirus. They should have followed up on that properly but instead they maliciously shut her down and maliciously covered up her finding and they called this disease psychosomatic.

    "And The Band Played On" refers to how the band on The Titanic continued to play as the ship was sinking.

    "And the Band Played On: Politics, People, and the AIDS Epidemic is a nonfiction book written by San Francisco Chronicle journalist Randy Shilts, published in 1987. It chronicles the discovery and spread of Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS) with a special emphasis on government indifference and political infighting—specifically in the United States—to what was initially perceived as a gay disease. Shilts' premise is that while AIDS is caused by a biological agent, incompetence and apathy toward those who were initially affected by AIDS allowed the spread of the disease to become much worse; AIDS was allowed to happen."

    The difference for us is that CFS was seen as a Yuppie Illness instead of a Gay Disease. As soon as they label it something like that the rest of America can rest easy that it won't affect their children or grandparents or themselves and they can go back to sleep. I'm not sure why Yuppies weren't afraid of this "flu" but I think it's because they were told that the Yuppies with CFS were a bunch of White, middle-aged, whiny women and it was easy for everyone to tell themselves that THEY couldn't get CFS because they either don't fit that description or they do but they aren't whiny.

    "The discovery of AIDS in the nation's blood supply and subsequent lack of response by the blood banking leadership occurred as early as 1982, yet not until 1985, when AIDS antibody testing was approved by the Food and Drug Administration (FDA), did blood bank industry leaders acknowledge that AIDS was transmitted through blood transfusions. Shilts covered that blood bank industry leaders asserted that screening donors for hepatitis alone might offend them, and the cost of screening all the blood donations provided across the country every year was too high to be feasible."

    And from a Blog: "The worst ethical dilemma, in my opinion, is regarding the safety of the blood supply. It is morally reprehensible that any medical professional would oppose testing the blood supply for the viability of the blood product. Running a cost-benefit analysis when the public’s safety is at jeopardy is completely wrong. Lives could have been saved, specifically the cases mentioned in the movie. The woman who had heart surgery and the numerous hemophiliacs who received blood transfusions were all infected with AIDS because the doctors representing the government and other institutions refused to financially back the simple blood test. Don Francis discovered that the Hepatitis B test administered to the blood was 88% effective in discovering contaminated blood. Even with this information, no steps were taken to combat the problem and people that never should have been exposed were to the HIV virus. After several years of stonewalling for this specific test, the medical field finally relented and realized that the public would not continue to sit back while nothing was done. The safety of the blood supply should have been a top priority during the AIDS outbreak because it was for overall public good to test the blood."

    That's exactly what I'm saying. Osler's Web is our And The Band Played On.

    [This Message was Edited on 11/07/2009]
  6. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    So, we are hearing the same argument: Can't test until there is a reliable test.

    Well, at least this guy said it should be within two weeks. After two weeks, the press might want to follow up and see if it is done.

    You make very good points that the lack of fear is because it was labeled a yuppie flu. Another reason is because it happened mostly in women. So the ones in power, the men, did not feel such fear. Plus, it was also given a psychological twist of neurotic women. So for all the women who were mentally and emotionally stable, they felt they were immune. Also, remember people weren't dying. They just stopped working and became invisible. Public funerals would have increased fear.

  7. gapsych

    gapsych New Member

    The book "The Bank Played On" is one of my favorites. Did they make a movie based on the book? I might be thinking of "Angels In America". I saw that play, loved it and have the HBO series in my queue on Netflix. But I digress.

    I want to donate my body to science, if they can not take my organs. I think this was discussed in a previous thread where someone said it actually costs to do this. Maybe cheaper than a funeral/coffin?

    Even better would be a place where research on FM and CFS, I am not sure if I have CFS or not.

    [This Message was Edited on 11/10/2009]
  8. jasminetee

    jasminetee Member

    Tina- I'm so glad you know now and you are always thinking of how the press should be involved. :)

    gap- I've seen a lot of the Angels in America shows on tv, it was a tv mini-series in 2003. They were really good and I think about them often. I could relate to what the characters were going through in some ways. I thought that show was really well done.

    And The Band Played On was made into a movie in 1993. Here's Netflix's description: "Based on journalist Randy Shilts' controversial tome detailing the emergence of AIDS in America, this gripping, made-for-cable film follows doctors at the Centers for Disease Control as they search for a cure. But an ambivalent U.S. government, red tape and ego battles between French and American researchers thwart the CDC's efforts. The all-star cast includes Matthew Modine, Alan Alda, Ian McKellen and Lily Tomlin."

    I just moved it to the top of my Queue. I'm glad you asked, it was in my Queue but I wasn't thinking of promoting it until I looked it up just now and saw it was in there.

    This is from And The Band Played On in Wikipedia:

    "Shilts' book has been used as a standard when compared to subsequent medical crises including breast cancer, chronic fatigue syndrome, Agent Orange,and continued response to AIDS.Howard Merkel notes Shilts' tendency to assign blame, writing "A requirement of the journalist, and certainly the historian, however, is to explain human society rather than to point fingers". Jon Katz in Rolling Stone refutes this by stating "[Shilts] fused strong belief with the gathering of factual information and the marshaling of arguments, the way the founders of the modern press did. In doing so, he has exposed the notion of objectivity as bankrupt, ineffective, even lethal".

    I hope they do more autopsies on PWC. I've heard that they have enough bodies but I don't know for sure. I don't know what it entails to donate your body to science. I'd like to find out. Maybe when the WPI is up and running we will.

  9. gapsych

    gapsych New Member

    Thanks, I am going to put "And the Band Played On" in my queue.