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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Is it time to take the pledge to NOT donate blood?

Discussion in 'Action Alerts and Advocacy' started by srmny, May 4, 2010.

  1. srmny

    srmny

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    Moderator Note - This thread started with the following post about raising public awareness of risks to the blood supply from CFS patients, by threatening to donate blood. However, please read through the entire thread as the message has been modified to take a pledge NOT to donate blood, and use that pledge to help raise awareness of CFS as a potentially infectious disease.

    I can't ignore it any longer. I am ANGRY! I have not been this angry since I read 'Osler's Web'. I am no newbie and thought I had gotten pretty good at swallowing my anger. I have been subscribing to CFS forums since the mid '90's. Then, every few years when, as a group, our anger and frustration reached a boiling point, SOME CRAZY PWCFS would suggest a BLOOD DRIVE. Well, today I am that crazy PWCFS! I am bracing myself for an onslaught of criticism for my suggestion. But please just let me finish.

    I went to the meeting in DC last year and I listened to my government tell me they were "considering" locking us out of the blood supply. Weeks later, it sent out the word that CFS and XMRV were still "unproven" and so the blood supply did not need to be protected from us. I DISAGREE!

    Is it time to force their hand in front of the world? They know we are too sick to want to give blood and so they can afford to ignore a potential medical weapon of mass destruction - ME/CFS. Although my first choice would be to cue up outside the best teaching hospitals in all the major cities in the world, with protest signs and news reporters in tow, I know that is just a dream. I also know that some countries are ahead of the USA and have already banned PWCFS from their blood supply. Of course in GB, you can't give blood if you say you are feeling poorly. Apparently they think they can effectively ban ME/CFS blood while purporting to just be looking out for the patients? I know I don't have days that I don't feel poorly.

    BUT, it is ME/CFS Awareness month and the CFSAC meeting is May 10th. That day the US government will give us an update on the blood safety and XMRV. I think we should be prepared to hear that XMRV is still unproven. If they have refused the last 4 WPI research studies because it is unproven can we expect any other verdict? ( That is what really tipped the scales for me - I am really pissed off).

    So we need to "virtually" march. We could flood the CDC or HHH main switchboard with phone calls at a specific time of day, every day, all month. Just to remind them that May 12th and the month of May are International ME/CFS Awareness day/month and we are pretty certain they don't know it! But I think we should start an online petition - take the pledge. I pledge to "celebrate" International ME/ CFS Month by going to my local hospital and donating my blood. I envision we could have hundreds of signatures by the end of the month and on May 31st we will pledge to donate our blood to our country's blood supply UNLESS my government steps up and protects the blood supply.

    We can consider how we will act up to May 31st but as we think it over the petition will get more signatures and, hopefully, some press. Of course, the ultimate goal is to NOT give blood. But we will have all month to consider our actions and hopefully, there will be some other interested parties - doctors, scientists, government officials, and the PRESS.

    Am I the only one angry enough to take the pledge?
  2. Sasha

    Sasha Fine, thank you

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    I understand you're angry, symny, but I don't think that making ordinary people think that people with ME would deliberately infect them is the way to go. Your idea might start out as a kind of bluff for publicity purposes but it would be incredibly easy for that to get lost. Consider how hateful it is for those people who know they are HIV+ to sleep with people without warning them (rare but does happen - there have been court cases). Is that the kind of behaviour we want to be associated with? I don't think so.

    Also, bear in mind that among the millions of people worldwide who have ME, there are going to be some who are mentally ill. Having ME doesn't protect us against being mentally ill and there's no reason to think that mental disorders aren't among us at the same rate as in the general population - e.g. if 1% of the general population have schizophrenia, so too probably do 1% of us. If some of those people hear that message, are they going to be well enough glued together to make good judgements about this and to understand it's supposed to be a bluff?

    Please, let's not put a dangerous idea into people's heads. I really wouldn't want to be associated with this - and if it started up I'd have no way of dissassociating myself, we'd all look culpable.
  3. srmny

    srmny

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    Sasha,

    Your reply is exactly the same one I used 15 years ago. Perhaps that is one reason we are so badly treated? We are always concerned about our image. Our image has been crazy and lazy no matter how we behave. I am not threatening to actually give blood, either as a group or individually. We will pledge to donate our blood on May 31st unless our government stops us. We will have a full month to discuss it, publicize our concerns about the blood supply and then decide whether or not to go through with it if our governments ignore us. If we have schizophrenics amongst us I doubt that a petition would influence them either way. Afterall, I am not suggesting we donate blood - only that we make the world aware that we could and we would not be culpable. That is how little our government thinks of both patient and public.

    Again, am I really the only one that is this angry?
  4. serenity

    serenity Senior Member

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    Austin
    i am afraid i am with Sasha, i understand your anger of course - but this is the wrong way to behave. i would never ever intentionally hurt anyone & would never even dream of indicating that i might. violence is always wrong.
    two wrongs never make a right. i am hoping that i will not be treated like a leper when this all comes to pass. they could be very mean to us if they wanted to, the normals. i think it is best not to give them a reason to fear us.
    we want to hope that intelligent people will understand & cooler heads will prevail. i will not be a part of any other type of behavior.
    i have my own integrity to worry about. sometimes it's all i have, but i do still have it & will not lose it.
  5. Frickly

    Frickly Senior Member

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    srmny, Your not the only one who is angry. However, this is just not the right thing to do. I would never intentionally infect the blood supply or even threaten to do so. However, I like the idea of taking a pledge. How about asking others to make a pledge to send a letter, make a phone call or email someone everyday. You could prepare a list of organizations that should be contacted, provide a letter/email template or form and start a facebook page asking people to take this pledge?
  6. srmny

    srmny

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    danib,

    You are actually with Sasha.

    If I am suggesting that we threaten to do something that is totally legal, perhaps even encouraged by our government, and am making it clear that we may or may not commit that legal action - where is the violence? All I am trying to do is commit peaceful protest and get some attention from the press.

    Perhaps I am the only one that is angry enough to make a "fuss" about it.
  7. serenity

    serenity Senior Member

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    Austin
    yes i edited, i have had horrible thoughts in my anger. but i would never make threats.
    i'm sorry i can't agree. we can make a fuss in another way. i do not see this as a peaceful act.
    legal or not we know it's wrong.
  8. srmny

    srmny

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    Since this is the activist thread I do want to make one point. It is clear that others think that I am out of line. Honestly, I can't understand it. When we had the last CFSAC meeting last October, many of us tried to rally the troops to get to DC and give testimony before the CFSAC. We spent the whole month before trying to get people to commit to fill a seat. I don't remember the actually count but I thing we might have gotten 6 people to the meeting. We all know the squeaky wheel gets greased - we don't squawk at all. Frickly, I have been making phone calls and writing letters for the last decade. They go unanswered and unread. I think we have to make people "uncomfortable" if we want to make a point. I think if we threaten to maybe or maybe not commit an act, we would be making it clear that our intent is to raise awareness and not infect the general public.
  9. V99

    V99 *****

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    Should the pledge be, today we pledge to not donate x amount of blood. See how much blood we don't raise. That way we cannot be accused of anything.
  10. valia

    valia Senior Member

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    I'm with you srmny,

    I couldn't give a rat's arse about image, I want my life back, I don't know by what method we should fight but fight we should.
  11. srmny

    srmny

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    Thanks for the moral support valia. I agree with you completely.

    V99, I actually kind of like your idea. Let's pledge to not donate blood and count how many live's we spare from this horrible disease? Although I would not know how to figure out how many lives = pints? I think that your wording would make everyone more comfortable with the pledge.
  12. Sasha

    Sasha Fine, thank you

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    srmny, as I understand it, the message that you would want to give out to the public would be "we with ME believe XMRV made us sick and if the government doesn't say it believes it, we will donate our blood to infect the rest of you". I'm not sure if you're saying the message would be "we might donate our blood" instead of "we will" but either way I don't think that distinction will survive if it was reported in the media. Conventional activism might not have paid off much over the years but that doesn't mean that it's not possible to make our situation much worse by having people regard us as willing to harm others and contemptuous of the well-being of the innocent healthy.

    Also, if you're saying that people with ME will know that whatever happens, they shouldn't donate their blood, then you're going to have to make that completely public, so that everyone with ME will know it. That means that every journalist will also be able to know it's a meaningless bluff. And they'll report that. It can't work.

    I'm sorry, srmny - I know you're angry and so am I but I really don't believe that this can help.
  13. serenity

    serenity Senior Member

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    Austin
    thank you for being willing to consider V99's version. i am afraid i would have to be much quieter about my illness, & remove myeslf from this group if talk of starting a war against the normals was tolerated.
    i find this disturbing & scary, & i do not wish to be lynched. i can't be associated with that kind of talk or behavior in any way.
    i am relieved you are happy about V99's idea.
    that seems a lot more reasonable.
    again, i understand the anger. but let's not let it get too far out of control.
  14. valia

    valia Senior Member

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  15. srmny

    srmny

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    I have tried to make it clear that we would not be giving blood - only trying make people aware that we can give blood. We have repetitively asked our government to ban us from giving blood but we are refused every time and we think the public should be made aware of it. I know that none of you know me but I am still quite surprised that any of you would think I was planning to try to infect the public with our blood. I do have a lot of cognitive problems - particular when writing - but I am apparently worse than I thought! But it also proves that you all maybe correct that people would jump to that conclusion.

    So let me clarify, we would be pledging to NOT give blood and would collect signatures on line until May 31st. The only problem I am having with this is that I don't see how we can get press coverage for NOT giving blood. There is no threat of any kind this way. I am afraid we have taken away our power. Any suggestions?
  16. serenity

    serenity Senior Member

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    Austin
    ok, let's please be very careful with our wording. the possibility of hate crimes against us exists & we need to be careful not to fuel the fire.
  17. srmny

    srmny

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    danib,

    I am a bit confused - why are you on the advocacy thread? And why do you think we will be victims of hate crimes?
  18. serenity

    serenity Senior Member

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    Austin
    guess i'm in the wrong place. i will gladly leave, thanks for pointing out my error. i just click "new posts" as was suggested when i first joined, i do not pay attention to what thread. my mistake.
    i'm perplexed by your other question, we pose a threat & people always seek out to destroy what they fear.
    anyway, again, it's an ugly topic & i'll gladly leave it. i only might suggest that you edit your original post if it says something you did not mean?
    thanks.
    (i do want to be clear, this is not my idea of advocacy.)
  19. valia

    valia Senior Member

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    How about setting up outside a blood bank with a petition to be signed by passers by (the public) explain to them that we have a debilitating disease called M.E and a possible retrovirus and would they be happy if we were to donate blood.
    If their answer is “No” they should be happy to sign the petition.

    Sorry if I haven’t explained it very well, hope you get the gist.
  20. srmny

    srmny

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    Hi valia,

    I think that is a good idea. The question is, can we realistically do it? The last time I tried to "protest" I managed to sit for 7 hours for 2 days. But it took me weeks to get back on my feet. It might work if there is something like a national blood bank day where people are lined up to give blood. I can rally for one day but if I start trying to routinely rally (multiple days) I can relapse for a year or more. I think this is the main reason we are so poorly organized. That and many people live in fear of losing their benefits.

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