Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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high ferritin level ??? give blood donation???

Discussion in 'General ME/CFS Discussion' started by Johnskip, Apr 19, 2017.

  1. Johnskip

    Johnskip Senior Member

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    I think it would be helpful to get unbound excess iron out of the body??
     
  2. alicec

    alicec Senior Member

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    Only abut 10 % elevated ferritin is due to iron overload.

    Ferritin is an acute phase protein so is elevated in inflammatory states, during infection, metabolic syndrome, liver disease and a number of other conditions.

    The single most sensitive indicator of iron overload is transferrin saturation. >45% is strongly suggestive of iron overload, >55% is unequivocal iron overload.
     
  3. Dechi

    Dechi Senior Member

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    You're probably just kidding, but please don't take the chance of giving blood if you have ME.
     
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  4. Johnskip

    Johnskip Senior Member

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    Oh you think you can give somebody ME by giving blood I disagreee, and I think it can actually help us by giving blood
     
    Last edited by a moderator: Apr 19, 2017
  5. Sushi

    Sushi Moderation Resource Albuquerque

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    There is now very good research indicating that there is something in our blood serum. We don't yet know what it is, but if you want to "give" blood, might be better to have it discarded than risking passing something on. In some places ME/CFS patients are not allowed to give blood.
     
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  6. Oberon

    Oberon Senior Member

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    I would really recommend listening to what alicec said above. A few of us just talked about high ferritin and low iron in this thread: http://forums.phoenixrising.me/inde...ow-iron-and-ferritin.50758/page-2#post-838661

    With something like CFS it wouldn't be surprising for someone to have high Ferritin with low iron levels. In my case I have had high ferritin for years and my iron is always either low or at the lower end of the scale.
     
  7. Oberon

    Oberon Senior Member

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    Just as an example, Canada does not allow blood donations for CFS.
    https://blood.ca/en/blood/abcs-eligibility
     
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  8. CCC

    CCC Senior Member

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    You can give a therapeutic 'donation'. This means they take your blood then throw it away.

    It's an established way of reducing iron overload.

    I have relatives (in law) who have to do this. I think they just needed a letter or somthing from the doctor to set this up.
     
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  9. Johnskip

    Johnskip Senior Member

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    Yes thankyou that's what I want to do
     
  10. Johnskip

    Johnskip Senior Member

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    I think this is how we get more energy reduce the excess unbound iron and up your ceruloplasm
     
  11. Johnskip

    Johnskip Senior Member

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    stored iron is measured by ferritin you do not want stored iron
     
  12. Hip

    Hip Senior Member

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    Though to be fair, although people may develop ME/CFS after receiving a blood transfusion, presumably by catching an ME/CFS-associated virus from the blood, that virus may not have come from an ME/CFS patient giving blood, but is more likely to have come from a healthy member of the public donating blood (because ME/CFS-associated viruses are common in the general population).


    In the UK, in any case, all blood and tissue donations from ME/CFS patients are banned.
     
    Last edited: Apr 20, 2017
  13. alex3619

    alex3619 Senior Member

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    Ditto. I have super high ferritin, but I am borderline low iron ... a point lower it would be considered a problem.
     
  14. Valentijn

    Valentijn Senior Member

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    Blood can be removed by a doctor, and is done routinely in hemochromatosis patients.

    And I agree that donating blood for use in transfusions would be extremely irresponsible while the cause of ME is unknown.
     
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  15. Jessie 107

    Jessie 107

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    I was reading about blood donation the other day, apparently if people with M. E donate it will make us more ill. For this reason we are not allowed to donate
     
  16. Johnskip

    Johnskip Senior Member

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    really why?
     
  17. Johnskip

    Johnskip Senior Member

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    why would it be bad for us to give blood???? I understand risk of other people absolutely but for us?
     
  18. Jessie 107

    Jessie 107

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    I don't know why, it just said donating blood would cause us to feel more ill than we already do.
     
  19. Johnskip

    Johnskip Senior Member

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    I don't believe that for one second
     
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  20. Crux

    Crux Senior Member

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    I suspect that brain iron deposition may be involved with neurodegenerative disorders. That would include ME.

    The studies, though are mostly with MS, Parkinson's, Alzheimer's, etc. patients.

    Phlebotomy doesn't work very well with removing brain iron. Chelation is looking better. Still, it needs more research.
     

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