media/publicity stunt- we cfs patients should organize a blood donation

Discussion in 'Fibromyalgia Main Forum' started by bigmama2, Oct 13, 2009.

  1. bigmama2

    bigmama2 New Member

    why dont we (cfs patients) all pick a day- and all go to various cities all across the us (or world)- and go to blood donation centers- and we would all wear a t shirt that says something like "I have Chronic Fatigue Syndrome. My blood may contain viruses like epstein barr, human herpes virus 6, and a retrovirus called XMRV. Because most doctors and the public think cfs isnt a real illness, i am sure there is no concern for me to donate blood to our nations supply." ok the shirts would have to say something way more snappy- but you get the idea. we could bring copies of our test results that show our ebv hhv6 titers. (those of us who have had those tests.)

    now that should generate some buzz. media should be alerted before hand.

    now of course i dont think we should actually donate our blood. that would be evil.

    what do you think?
  2. hensue

    hensue New Member

    Just dont meet anywhere cold and I am in

    hensue
  3. bigmama2

    bigmama2 New Member

    fred- good answer
    sue- ok!

    nofool- yes i am aware of that. but many of us have extremely high ebv igg titers. if this is of no significance- than why is it listed as part of official soc sec disability info re:testing that show support for cfs diagnosis and disability. look it up, nofool.also plenty of us also have titers( not igg) that show recent infection (not just past)
  4. misskoji

    misskoji Member

    What a VERY awesome idea!!!!!!! I'm in! Let me know if I can help organize somehow. We can start a cause on facebook, ask for help from several other support groups, ect.

    I hope this works, I really do!
  5. victoria

    victoria New Member

    the devil is in the wording tho, to fit on a t-shirt.

    Perhaps a protest like the Tea Party held in Washington DC would be the best coordinated with other cities on one day. That would be a big undertaking however... probably beyond most of us. We need somebody 'normal' to put it together and also have the 'normals' appear on our behalf, if we can't.

    Anyone related to or married to someone with great marketing skills and energy?

    all the best,
    Victoria
  6. AuntTammie

    AuntTammie New Member

    I love this idea! I think that somehow the CDC would still find a way to make us look crazy, though......I am wondering if somehow we could incorporate info stating that the UK does not allow ME/CFS patients to donate blood (would make it harder for the CDC to dispute).....also thinking that though it would be even more work, it would be great if we could somehow produce short flyers to distribute at the same time
    [This Message was Edited on 10/14/2009]
  7. AuntTammie

    AuntTammie New Member

    I really think that we could do something with this idea, so I am bumping it up
  8. AuntTammie

    AuntTammie New Member

    we could have this quote by Nancy Klimas (re CFS vs HIV):

    "I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V."
  9. jole

    jole Member

    I'm missing something....is this just for publicity? 'Cause where I live we haven't been able to donate blood for years already. But it's a great publicity idea.............
  10. nah.stacey

    nah.stacey Member

    I am so in on this idea.
    I posted earlier about a letter I recvd' from the Red Cross stating that I am forbidden to donate blood and if I attempt to it will be considered a Federal offense.
    I don't have HIV or any other type of known illness that is banned from blood banks, they just said my Western Blot test came back abnormal "twice". They don't know what is wrong with me other than something is wrong with my blood. Talk about scare me. This was before I was diagnosed with this DD.

    Count me in.
    Nah.stacey