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CFS Blood Bank Drive

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by CFS-FIBRO-LYME, Jul 8, 2010.

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  1. CFS-FIBRO-LYME

    CFS-FIBRO-LYME

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    Blood bank demonstrations are so useless.

    I think everyone here should listen to the CDC, NIH and medical science and like good citizens get everyone out in their beds by ambulance or wheelchairs to donate blood.

    Preferably in Atlanta, Bethesda, MD., you know the places.

    When asked if you have an illness: "Oh, I'm deathly ill dear. Fully disabled. But don't worry, it's all in me head - crazy you know. Psycho-somatic. I'm apparently very much into pain, so the doctors tell me."
    When asked if you have a transmissible disease: "No, not according to the CDC I don't."
    When asked how could you potentially endanger others lives: "The government has been doing it forever and they've finally asked us to do our part. Glad to do me part I am."
  2. taniaaust1

    taniaaust1 Senior Member

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    I shouldnt laugh (i need to keep humour up about the situation) but with your post i had this imagine in my head of ambulances lined up with bedridden CFSers on stretchers, like half deads.. being wheeled out in a line with pale thin arms out to donate blood, saying with croaky voices saying "We want to donate blood".
  3. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I'll sign up. Obviously enough people are not sick with this disease. The more people that get sick and then perhaps we will get some medical attention~!

    I was thinking that this disease is not very communicable, that is why we are in the situation that we are in!

    Let's spread the disease!!
  4. Martlet

    Martlet Senior Member

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    Moderator: Please can we have an end to all these threats to donate blood? For a start, threatening anyone, whether in this forum or not, is against forum rules. Secondly, it is just so immoral that I am lost for words.
  5. jewel

    jewel Senior Member

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    Activism

    I may be missing something here, but I don't think anyone was really planning on donating blood... a demonstration at a blood donation site is different than actually donating blood... For one thing, even if it were safe to the recipient of the blood, blood donation would likely elicit a "crash" in the donor!

    I do think that action and activism require a variety of non-violent means, from very sanguine, scientific letters to editors of medical/science journals, to more pointed letters to government officials and letters to the editor, to phone calls and petitions, to media projects (movies, u-tube videos, sock-it-to ME campaigns, social media information, popular media-- e.g., 60-min/Oprah, etc), to angrier yet non-violent actions.

    Handing out brochures and setting out in wheelchairs or cots to "presumably" donate blood (since the patients' blood is "safe" per our authorities) would draw attention from the public and from the media...(no one, again, would really donate blood). And, would only require a few people at any given place, but if coordinated over many cities and possibly countries would actually make a powerful statement. It is not the only way to make a powerful statement, and perhaps there are other inspired ideas that would better serve the "cause."

    All of the above examples of activism -- at their various levels-- probably need to take place for maximal effectiveness. I've found that people tend to self-select into the aspect of action that best suits them, so (to out myself) I am more likely to write letters to my representatives, media, etc than go out to demonstrations. An artist might be more likely to use his/her visual or musical talents to put forth a message...

    This is what I take this thread/these posts to be about-- activism of one type-- rather than any desire by anyone to further spread this disease. I THINK THESE POSTS/ THREAD SHOULD BE KEPT!
  6. Sasha

    Sasha Fine, thank you

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    But

    This isn't the first time on this board that someone has called for us to donate blood as a piece of activism and then people have been surprised to find that others don't consider it a joke, even if it's meant as one. I hope CFS-FIBRO-LYME didn't really mean it and I understand gallows humour but I really don't like to see a thread like this remain on the site.

    Phoenix Rising is attracting more and more people as the XMRV story spreads and people come here looking for a community, information and support. I really wouldn't want this to be the first thing they see. If I'd encountered stuff like this the first time I'd come to the site, I'd never have come back.

    I'm sorry, C-F-L, but please, moderators, can we just have this thread removed altogether?
  7. Lesley

    Lesley Senior Member

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    I agree with Sasha!
  8. jewel

    jewel Senior Member

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    I fully and completely disagree with donating blood as "activism," just as I disagree with violence. The ends do not justify the means, in my way of thinking... bad, bad "Karma"!

    That said, I take the original posts as sarcasm and irony, perhaps offensive to some but not to others. What drew me to this site initially was the intelligence, sense of humor, level of information, and full discourse that unfolded on many issues. Many of us have just spent the last week(s) horrified by what appeared (appears?) to be censorship of science by the federal government... So, because I disagree in general with censorship, my preference is rather to see threads (unless they are pornographic, specifically threatening someone, using hostile language) remain, with the added posts of people who disagree , admonishing the idea behind the original post, clarifying responses they would prefer to see. The type of site that provides thoughtful input also can be appealing to people seeking community and information. Just a thought...

    Some of the topics posted elsewhere in this site may be uncomfortable to some people. I clicked in on one of the "prayer for CFS" threads and found most of prayers very clearly from a solely Christian perspective. I wondered if that would be off-putting to people from another faith tradition, but hoped that they would add their own prayers, if they felt so inclined. Similarly, threads concerning some of the very alternative (borderline (to me) magical thinking) treatments can also be a bit off-putting to some, especially those with a more Western science bent.

    So, who decides which topics are the ones to be kept, which to be discarded? Which are worthy of comment, which not? If we take down anything that someone first entering this site might find upsetting (such as questions about conspiracies, questions about whether this is transmissable, expressions of frustration or anger), do we then just take down the entire site?

    Again, I am questioning (nay, admonishing) myself for spending too much time on this forum; almost every time I post, I regret having done so. This is why, though I was considering another reasonably large donation to this site as soon as finances allowed, I will now put that decision on hold indefinitely...
  9. Sasha

    Sasha Fine, thank you

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    Hi jewel - I completely agree with the need for activism but

    I agree that's a possible interpretation but I don't find that clear from the post or from one of the subsequent responses. On this issue, if it's a joke, it needs to be really, really clear. Imagine being diagnosed with HIV and then visiting an HIV site and finding such a post from someone you didn't know. How sure would you be it was a joke? Would you want to stay on the site?

    I agree - but I think that the original post is threatening people (and again, if it's a joke it needs to be very clear that it is, as do all the responses). Other threads with religious/alternative medical treatment/conspiracy theory views that some may disagree with are not physically threatening people. For me, that's the key difference.[/QUOTE]

    The forum rules are clear on not threatening harm to people; I don't think that removing such material means taking down the whole site.
  10. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    ...and attracting journalists too. The UK Guardian's Health Editor, Sarah Bosley, has quoted from posts on this forum in her article on XMRV and freelance Guardian science writer, Martin Robbins, has had a membership, here.

    Individual posts from these forums often appear on the first page of Google searches. Individual posts can be republished on other platforms and read out of context.

    I don't want my material associated with talk of donating potentially infected blood, whether posted in irony, sarcasm, whatever.

    Suzy
  11. V99

    V99 *****

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    It would be better to go to blood banks and inform them why you are not donating blood.
  12. Cort

    Cort Phoenix Rising Founder

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    I think the question will be moot anyway - the CAA has reported that the Alter will be out in a couple of weeks and Mindy Katei - has reported that it will be positive (Hopefully her sources are right).
  13. V99

    V99 *****

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    This paper will not end the fight in one go. We will still need to fight somehow. This will be the big change, kind of d-day. It's over for them, we just have to push through with our overwhelming numbers and science.
  14. ixchelkali

    ixchelkali Senior Member

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    :D:D:D:D LOL! Thanks for the laugh, C/F/L.
  15. ixchelkali

    ixchelkali Senior Member

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    Oh. Well. I thought it funny.

    I can understand someone not thinking it was funny, but it's hard for me to imagine someone not understanding that it was intended as humor. Maybe we need another smiley with a sign that says "This is humor."
  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    That does not make it ethical for ME and CFS activists to employ the same tactics.

    I get sick of the unsubstantiated crap shovelled daily from site to site on Facebook; the level of paranoia and conspiracy* on some platforms is disturbing, likewise the misinformation and misattribution that gets shunted around threads by those who don't bother to check their sources for accuracy or provide references to support the claims they are making.

    *I've been on UK Yahoo lists where the going down of a group's message archives for a couple of hours for maintenance or the delay of a post going up on a site is rationalised as "Wessely must be intercepting the messages" by those without the wit to consider whether other Yahoo sites are down or that they might be on pre-moderation.

    None of this helps engender respect amongst the public/media/whoever for this illness and those affected by it.

    I'd rather not see that added to by the condoning of this type of talk. You've said these are not serious intentions but this is a public site. Everything published on it is open to misinterpretation or of being used against us.

    You want the public to understand you are "as mad as hell" not that you are mad.

    The majority of you here are posting anonymously. I wonder how bold you would be with your own names above your avatars? Once you're accountable for every word you write on the internet, I can tell you it's a whole different game. But it's not a game and if you don't mean it then don't say it - because sooner or later you'll be quoted out of context.

    Some of those who have tested positive for XMRV have been wearing it like a badge of honour and that disturbs me too.

    Enough already.
  17. taniaaust1

    taniaaust1 Senior Member

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    What is being done to us is what is truely immoral. It can also be said that we are being immoral for not forcing them to stop allowing blood donations!!!!
    If someone did actually donate blood in protest and the reporters got hold of the incident.. maybe it would cause a public outcry and get all blood donations from us stopped.

    I obviously have a different way of viewing things.. it wouldnt be a revenge thing but rather a bringing change which none of us doubt is needed.
    ...................

    Its no game.. i dont think any of us think the XMRV stuff is a game.
    i have no fear of posting my name and address at all.. Whatever i say here using my nic. I have no issue with saying with my name.

    my name is Tanya Selth and i live in Australia!! ... [Editor: Deleted address for safety reasons]

    So many of us feel strongly about the XMRV stuff.. (myself cause not only me but cause it may of KILLED both of my grandfathers with their prostate cancers). Would it really be wrong for someone to cause a public scene by donating blood if it causes the government to do the right thing and stop blood donations.

    (note my post is NOT A THREAT as i in Australia hence i have no need to force this issue as we are banned here from giving CFS blood. Our government here has done the right thing). If i lived in America thou.. who knows what I may do as I see benefits in doing the blood donation and hence then bringing in a forced change instead of what is immorally going on now where some (many more than one person) may be donating blood.
  18. V99

    V99 *****

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    taniaaust1, can I suggest you remove your address. This is nothing to do with this chat, but there are a lot of crazy people out there, and you won't need their attention I am sure.
  19. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Yes.

    Wrong.

    Immoral.

    Unethical.
  20. muffin

    muffin Senior Member

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    Oh come on now...Obvioius clever sarcasm used to make a point

    Right off the bat I realized that the first post was dripping with sarcasm and meant to show just how stupid and contradictory the whole XMRV issue is with the US Feds. I saw nothing wrong with the post and thought it rather clever in a rogue humor sort of way.

    It was just so very obvious that the poster has no intention of donating blood. That was so clear. And if people were offended by this very obvious bit of "smack in the face" post to the Feds, well, sorry but there is still free speech in the US even if the NIH/CDC forget that when it comes to well done studies by other researchers.

    The post was obvious sarcasm which made a point and a jab at our idiots in the US.
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