CFSAC Blood Supply

Discussion in 'Fibromyalgia Main Forum' started by jasminetee, Nov 2, 2009.

  1. jasminetee

    jasminetee Member

    I'm thinking of Tina who used to be perky and anyone else alerting the media about XMRV found in CFS and the Nation's blood supply. The NIH has posted the webcasts of the CFSAC 2 day Meetings now and I'm watching the first one and they talk about the blood supply after the introductions and Social Security Administration talk on the first day. They seem to finish and then go on with it again so let the media people know this when you contact them. They need to watch the whole thing until the next topic comes up.

    The website is:

    You have to scroll down a ways to get to the CFSAC meetings, and Day 1 is further down than Day 2.

    I think it's a great idea you have to contact 60 minutes and 20/20 Tina. Go go go! :)

    [This Message was Edited on 11/02/2009]
  2. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Thanks a bunch. I am going to have to do my own story on today's couponing so I will be busy with that. I have to attend a class tomorrow. It is a big story with multiple sources. And since I volunteered at the library today, I will need to rest for my health in the rest of the week.

    But, I will do what I can.

    Y'all help too.

    [This Message was Edited on 11/03/2009]
  3. jasminetee

    jasminetee Member

    Definitely don't push yourself too much. There's no rush on this anyway. I think you're an ideal person to contact media sources since you are one of them. :) If you think more letters etc... will help let us know.

    Well, I'm not sure what the numbers say on the video when they start talking about the blood supply but it's somewhere around 43 or 44 and then they start talking about Research Grants and then at 47 Leonard Jason brings the blood supply back up as a topic.

    They talk more about Research Grants again and then at 50 the blood supply is brought up again.

    Once the FDA guy talks then they seem to be done with the blood supply topic. That's at about 51:50.

    Then 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.

    [This Message was Edited on 11/06/2009]
  4. Spinetti

    Spinetti New Member

    Thanks for doing a great job and adding your newspaper experience.

    I do have a concern about 20/20. I can't imagine John Stossel doing us any good. He likes to promote his own controversial opinions and is not objective. He does not have the stature or credibility XMRV deserves.

    60 Minutes or Frontine would be great. Annette Whittemore interviewed on Bill Moyers Journal? The WPI team around Charlie Rose's table? Just some ideas.

    The blood supply issue is certainly going to get peoples' attention.

    ETA: I've noticed people are crashing because of the excitement and wanting to do more than is their limit. Please take care of yourself first. This can wait. It does no one any good it we overdo it and take ourselves out.

    [This Message was Edited on 11/03/2009]
  5. jasminetee

    jasminetee Member

    Hi Spinetti,

    It's good to get your opinions on this. I don't watch much 20/20 so I trust your judgement there. I do watch the other shows you mentioned that you think might be good to contact and I agree. I'd be thrilled to see CFS covered by Bill Moyers or Maria Hinojosa or Don Broncaccio on NOW or Peter Jennings or Charlie Rose.

    I agree this can wait but if people want to start contacts with the right media sources that's fine too. Time is on our side for once. The more they find out the more likely the media will want to cover it. And we know they're working very hard right now to figure this out. :) Finally!

    I wanted to note here that Dr. David Bell mentioned the blood supply in his latest newsletter too:

    "...much work needs to be done to verify the control incidence. This is particularly true because the nations' blood supply could be contaminated. (By the way, no patient with ME/CFS should donate blood - personal opinion) The Japanese Red Cross has said that there is a "low incidence" of XMRV in their blood supply."

    The CFSAC also states much later on the first day that there is a researcher testing the nation's blood supply right now. This is around 2:50:00 but I lost my place again when I tried to rewind. That keeps happening and it's sooo frustrating! I'm going to have to remember to write down the time before I FF or RW.

    At 4:00:00 on Day 1, Wanda Jones and James Oleske called the Office of Blood Safety when the CFSAC came back from lunch. Wanda explains a bit about the office and how blood safety works but they only get voice mail both times they try.


    [This Message was Edited on 11/04/2009]
  6. denis321

    denis321 New Member

    forgot his name, was surprisingly clear for someone who was told the day before that he would be testifying at CFSAC.

    What I recall is that he said they hope to have a report out in a few weeks.
  7. Spinetti

    Spinetti New Member

    Ditto! See you at the other place. I really shouldn't be posting. I'm running on fumes. Should take my own advice.

    j spinetti

    ETA: A, tee, didn't Peter Jennings pass away?
    [This Message was Edited on 11/03/2009]
  8. jasminetee

    jasminetee Member

    Oh that's right, Peter Jennings did die. May he rest in peace.

  9. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Yes, Peter was my favorite. He cried on T.V. about a story about Huntington's disease in a family in Georgia where the mother was accused of murder because she assisted her sons to die. She has seen her husband die from the horrible disease, then one of her sons got sick. Then another. When they came back too Peter, he had tears in his eyes. I was hooked.

    I e-mailed 60 Minutes again. This time I took the approach of a virus that a private research institute discovered in two years that the CDC did not find in 20 years of research. Sounds like a story.

    I will try them again in a couple of days. I might call.

    I prefer 60 minutes because of the time they give is enough to cover the story better, their research and their reputation, and they have a fairly high viewership. Not a big fan of the 20/20 of today. But they did do a story on CFS over a decade ago. And I agree with the Stossel comments. They tend to be a little more sensational than 60 minutes. And the public T.V. stations, honestly, don't have enough viewers. Not to say I would not welcome their coverage, we will take what we can get. But I am pursuing 60 minutes.

    Isn't there some cable shows that do health news or programs on real life health stories? That would be good.

    Also, remember a lot of T.V. News gets tips for their stories from the newspapers. So local, metro, statewide and national newspapers is a good avenue to try.

  10. jasminetee

    jasminetee Member

    Glen-- thank you for trying to get the media in Canada to pay attention. Hopefully, they will want to very soon.

    Tina-- I remember that story about the woman who did the mercy killings of her sons with Huntington's Disease. That was so tragic and I completely understood how she and they felt. I don't recall Peter Jennings crying but I am not surprised. That man had a heart of gold.

    There are several compelling angles the media can take in regards to CFS and I think whatever you feel will get them most interested is best. Thank you again for working on this. :) Best of luck!

  11. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I got a reply back from 60 minutes. They asked for me to send it in the mail. But they also gave me an e-mail address. I will do both.

  12. AuntTammie

    AuntTammie New Member

    Tina, it would be awesome if 60 minutes does this.....thanks for contacting them!
  13. jasminetee

    jasminetee Member

    That's great Tina! Feel free to give them the minutes into Day 1 of the CFSAC that I posted above if you want to inform them about the times they discuss the blood supply issue.

    By the way, the CFSAC keeps mentioning how they don't want XMRV to become another case of And The Band Played On, although it did and it's too late for that if you believe DeFreitas had found a retrovirus in CFS back in 1991. Well, out of curiosity I checked out And The Band Played On which is about HIV and came across this:

    "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."


    [This Message was Edited on 11/04/2009]
  14. AuntTammie

    AuntTammie New Member

    "blood bank industry leaders asserted that screening donors for hepatitis alone might offend them"

    screening blood might offend donors?! and that's worse than possibly infecting the recipients with something that will KILL or seriously harm them?! that is unbelievably stupid logic

    the only way that screening would be offensive is if they only chose certain people to screen, based on something that would seem prejudicial....if they screen everyone who donates and the people donating know that, how the heck is that offensive?
  15. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    It's good that you sent one too.

    Remember, if anyone else tries to get journalists to do stories, they have to be skeptical of anything they are told. They are like doctors in that way. So don't exaggerate or tell your conclusions. Just stick to the facts. If you lose credibility with them, then they will draw their conclusions and not listen to even the true evidence.

  16. jasminetee

    jasminetee Member

    Then it's great that glen sent that article since it's a government document. Good job glen.

    I'm glad you know the ins and outs Tina.

  17. denis321

    denis321 New Member

    It might be good to give them some names of knowledgeable people (anyone on CFSAC panel, WPI staff) in the field. Would Hillary Johnson be good? She's a journalist after all and may have some credibility with them. Didn't she win a journalism award when she was at Rolling Stone magazine for investigation into CFS?

    You might also want to mention the $13 million dollar misappropriation of funds by CDC in the 1990s and the congressional hearing regarding that. It's old news but sort of builds into why this illness has not been looked into as much as it should have.
    [This Message was Edited on 11/05/2009]
  18. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Yes, those are good points.

    When you make your pitch to the news media to do the story, the easier you can make it for them by hand delivering them sources, the more likely they will do a story.

    Now, people approach your local news media and other national media you can think of.

  19. skeptik2

    skeptik2 Member

    Great thing you're doing; I'm surprised it hasn't been picked up by
    the media yet.

    Wouldn't just sending them the article from Science be the most
    compelling? Nobody messes with Science.


    p.s. Yes, I'm exhausted by all this; excited, too...but patience is
    a virtue, and it will all come out soon....