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We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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Social experiment with family and friends

Discussion in 'General ME/CFS Discussion' started by lauluce, Mar 4, 2017.

?

a person who doesn't believe ME, being asked by you, wants to receive it?

  1. Yes

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  2. No

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  3. He/she is not sure

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  4. Evades question

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  1. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    As ME sufferers, I'm sure almost everyone here struggles trying to be just believed or understood by friends and family who sometimes even deny that we are sick at all or that ME actually exists. I propose, as an interesting experiment, to do this:
    -first tell them the main symptoms of ME, the suffering ad disability it causes, and he fact that is for life and there's no treatment, cure, or support from the state.
    -secondly, tell them that anybody can get ME and it's actually quite common, there's usually a trigger, and that there are reported cases where a BLOOD TRANSFUSION has caused the onset of the disease. Also, tell them that recently it has been found that cells of normal people put in the serum of people with ME start to malfunction in the same way as the ME sufferers ones, and that serum is a part of blood, received in blood transfusions.
    -explain them that any person with ME can donate blood as long he doesn't have aids, hepatitis or other common diseases screened at blood banks.
    NOW THE FUN PART:
    - ask them this simple questions: you don't believe in ME, but, would you be willing to receive blood from me if you need it? yo can even escalate this and tell them that if they required blood you COULD ACTUALLY, IN REAL LIFE, provide blood from them without them even knowing and without their consent, as blood banks do not care who the blood comes from as long as it passes their test, and blood can be donated to a specific person in need if you ask for it when you donate it. For example, if your cousin is in the hospital and blood of your type is being requested for him, you can go to the hospital and offer your blood specifically for him. This last part means that the person with whom you're doing this experiment will be now aware that at some point of his life, HE COULD RECEIVE YOUR BLOOD, the blood of somebody who supposedly has a made up disease...
    I'd do it with some people and post the results here, would you wish to do the same? I believe the results could be enlightening
     
    Mel9 likes this.
  2. Invisible Woman

    Invisible Woman Senior Member

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    As far as I'm aware the advice in the UK is that ME sufferer's should NOT donate blood, unless they are deemed to be recovered or at least no longer suffering from symptoms.

    I wasn't aware of this being changed or updated, but please feel free to correct me if I'm wrong.

    I believe your organs may still be accepted for donation though.
     
    justy, Mel9, lauluce and 2 others like this.
  3. Old Bones

    Old Bones Senior Member

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    It seems the restriction is even more stringent in Canada:

    "Canadian Blood Services defers donors with medical histories of Chronic Fatigue Syndrome — even if their condition is not active — because the potential effects on blood recipients are unknown."

    https://blood.ca/en/blood/abcs-eligibility
     
    justy, PatJ, mirshine and 2 others like this.
  4. Webdog

    Webdog Senior Member

    If ME/CFS blood donation were truly considered a major health risk in medicine, I'd expect to see more effort on diagnosis.

    When ~90% of the ME/CFS population doesn't even know they have the disease, you're effectively telling 90% of the sick that it's ok to donate blood.

    I donated blood and platelets for decades, thinking I was doing something of benefit to others.
     
    Last edited: Mar 4, 2017
    *GG*, lauluce, belize44 and 1 other person like this.
  5. erin

    erin Senior Member

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    Since I tell people ME can be contagious they leave me alone :p. Surely they don't want to have it when there is a possibility to catch it.
     
    lauluce likes this.
  6. Sandman00747

    Sandman00747 Senior Member

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    United States, Kansas
    I decided years ago that most people just won't ever understand how really wicked this disease is unless they contract it. My friends I think all believe me but since I try my best to gut out almost every obligation, I also think they don't believe that I ever feel all that bad. And I don't have to tell all you guys how truly bad this crap can make one feel! I do wish everyone could feel what I feel in a severe flare for just say 5 minutes. And maybe for all my British friends I wish the British psychs could feel it for say a month or two. Is that too harsh? Shame on me. The collective world would change their minds in a heartbeat if they could experience this soul-sucking, body-slamming, mind-numbing nasty a$$ plague for even a little while!
     
    Jan, Wolfiness, Izola and 5 others like this.
  7. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    well, so this experiment is harder in Uk, I was aware of the restriction. However you could always not report your condition to the blood bank, and they cant test the blood for it. Anyway, in most other countries, this experiment is possible
     
  8. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    that's when they start believing the disease is real, i guess, when they believe it can be dangerous for them. While the disease only causes pain to somebody else, it doesn't exists. very convenient isn't it?
     
    erin likes this.
  9. *GG*

    *GG* Senior Member

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    Concord, NH
    Wish this had been broken up the 2nd time, perhaps the Original poster will break up that post?. Can most people easily read a large block of text like this?

    GG
     
    justy likes this.
  10. Alvin2

    Alvin2 If humans were rational...

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    I wouldn't go to all this trouble, i just let them see me when i am having acute symptoms. :ill:
    When people see someone with what looks like delirium or a seizure (from their perspective) it does a lot of convincing
     
    Last edited: Mar 4, 2017
    lauluce likes this.
  11. halcyon

    halcyon Senior Member

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    One wonders though, if Ron Davis is correct and all symptoms of this disease are caused by metabolic changes due to some regulatory soluble factor in the blood, it seems it would be possible to transmit the disease, at least for a short time, to a healthy person via blood transfusion. And if the disease is not infectious or caused by a virus as they say, there should be no danger in doing this. Any volunteers?
     
    Invisible Woman, Mel9 and lauluce like this.
  12. Alvin2

    Alvin2 If humans were rational...

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    who knows, it may be caused by something that travels in the blood or something generated in it, hence a transfusion may transmit the condition or may just cause malaise (or even nothing) for a day or two.
    This condition is essentially torture, which is illegal under the Geneva conventions (though someone should inform right wing US citizens of this) so i would not wish it on anyone, not even the PACE authors
     
    Mel9 likes this.
  13. halcyon

    halcyon Senior Member

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    Long enough to change the mind of anyone that doesn't believe the disease is real.
     
    lauluce and Mel9 like this.
  14. Alvin2

    Alvin2 If humans were rational...

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    if they want to believe lies then they have a lot of good company, fake news is not only for conspiracy theorists anymore
     
    lauluce likes this.
  15. halcyon

    halcyon Senior Member

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    Someone has got to be up to it. They'd be the Barry Marshall of ME, they'd be famous!
     
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  16. Alvin2

    Alvin2 If humans were rational...

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    i do not understand, someone who becomes infected with CFS would become a Nobel prize winner?
    Giving yourself a treatable bacteria is very different then a lifetime of an incurable disease
     
    lauluce and Mel9 like this.
  17. halcyon

    halcyon Senior Member

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    I'm half joking. Just trying to illustrate that sometimes something radical like that is what it takes to overcome disbelief. Again, if Ron Davis is correct, there's nothing to become infected with. You'd just be injecting the healthy person with a soluble protein that would disrupt their metabolism for as long as the protein hangs around for.
     
    ukxmrv and lauluce like this.
  18. Alvin2

    Alvin2 If humans were rational...

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    i know, thats why i said you won't win a Nobel prize for giving yourself CFS :rofl:
     
    Wolfiness likes this.
  19. Skippa

    Skippa Anti-BS

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    Can we get one of the PACE crew to put their money where their mouth is and accept blood from one of us?
     
    Jan, Marc_NL, Webdog and 3 others like this.
  20. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    not all of us have such evident symp
    that little time of truth may be enought to wash away the disbelief and the lies... just wishful thinking
     

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