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Body Donation After Death for Research?

Discussion in 'General ME/CFS News' started by muffin, Jan 1, 2010.

  1. muffin

    muffin Senior Member

    FONT="Book Antiqua"]I am having my Will and Medical Directive done soon and would love to know where I can donate my body for CFIDS research. I have emailed all over and no one knows who will take a CFIDS body for research. If I can not find some research org or researcher to take my CFIDS body then I will have it donated to a Medical School for use by students. I will NOT allow any of my organs to be donated since I do believe that wouls transmit whatever it is we all have to another person and that I can not tolerate.

    So, does anyone know of any research organization that will take donated bodies for CFIDS research?

    Morbid subject, but I don't want my very sick body to go to waste when someone, somewhere can "slice and dice" and really see what is going on in a well-documented CFIDS/FM sick body.

    Anybody??? :confused: Thanks.
  2. Min

    Min Guest

    ...& please does anyone know if this can be done in the UK? I've currently left my body to the local university for training doctors, but would much rather it went to an M.E. research tissue bank (& NOT one organised by AfME!).
  3. _Kim_

    _Kim_ Guest

    muffin, this is such a beautiful thought. There is so much that could be learned from studying the remains of anyone who has died from an unexplained illness such as CFS. My hunch is that there aren't any programs in place for your idea. It might have to be coordinated with a medical school that has a CFS researcher or interested pathologist on their faculty. Is there a med school near you where you could inquire about this? I think finding a large scale current project or 'repository' is unlikely. The remains can be stored for up to a year, but storage and transportation (if the body is not local) are costly.
  4. The Phantom

    The Phantom Member

    near Philadelphia
    The Wisconsin ME/CFS Association has a fund in memory of Casey Fero that is dedicated to developing a tissue bank. The link is: http://www.wicfs-me.org/casey_fero_blood_blank.htm
    It looks like the tissue bank may be physically located at the Whittemore-Peterson Institute. WPI has also said they have an extensive tissue and blood repository. I'm not sure if these are kept separate or if the Casey Fero Fund is being given to WPI to implement. And I don't know if they'll accept the whole body or just pieces. Sorry to be macabre. You could probably contact either organization to find out. Have you already contacted them? If you get more information it would be great if you posted it. It's been on my to do list for months (along with updating my will, doing the laundry, backing up my computer, cleaning off the dining room table.....you know the drill), and I'm guessing there are other people who would be interested, too. I agree totally--take any part of my body and stick it under a microscope if it will help.
    crittercherub likes this.
  5. Countrygirl

    Countrygirl Senior Member

    A great thing to do.

    Hello Min,

    I think I remember this question being answered by Dr Charles Shepherd at the M.E. Association. Might be worth contacting them.

    A friend of mine who died a few years ago with very severe M.E. (not all that far from you I think) left her brain to M.E. research. However, the brain was 'lost' and has never turned up :confused: Such a terrible and very tragic waste.
  6. kat0465

    kat0465 Senior Member

    i think Dr. Peterson touched on this too, he said he had a Patient if im not mistaken that committed suicide and wanted thier body to go to cfids research.
    and at that time he said noone wanted it :(

    things are different now, so maybe getting in touch with WPI would be helpful
  7. leelaplay

    leelaplay member

    wonderful idea

    Thanks muffin for thinking about this. On reading your post, my reaction was, "why haven't I thought of this?' I think a lot of us would like to do the same. Absolutely agree to not donate organs for transplant.

    Interesting point Kim that a local institution may be better. But I wonder if this would hold true for the first year or so if xmrv pans out to have a strong correlation with ME/CFS.

    I'll add it to my list to see if there's any such thing in Canada.

    It would be good to have a list of what each country has.
  8. Lily

    Lily *Believe*

    Donating body to science

    I made the arrangements to do this a couple of years ago. I didn't have specific ME research in mind, but that would certainly be great.

    My body is donated to the local medical school. It was an interesting thing to do. They (this institution anyway) have very specific criteria - things they don't want. Can't remember what all of the specifics were without going to look at the document now - it seems they wanted you to have all of your body parts for one thing - however they accepted mine even though it's missing a uterus. :)

    They also had weight parameters:eek:...... I usually only fudge that information on my driver's license, but in this case.....well, I thought I'd probably lose:eek: a few pounds before I actually croak:rolleyes:

    It's acually very nice, and a very practical thing to do, in my mind. I was really dismayed when I read the initial requirements and thought I may not qualify!!!! With a simple phone call, they will pick up the body, and when they are done, they will return the ashes if requested or sprinkle them in a nice place. No muss, no fuss:p and no $$$$
    crittercherub likes this.
  9. anne_likes_red

    anne_likes_red Senior Member

    Yes, I've seen Charles Shepherd talk about a tissue bank (I'm not sure if it's established yet). There is some reference to it in the MEA information booklets (and the ones I have are probably a bit out of date....)

    I have read recently that there's a tissue bank appeal. (Appeal for funds.)
  10. Alice Band

    Alice Band PWME - ME by Ramsay


    AFME & the MEA has been through a feasibility study on the tissue bank. It's being looked at seriously.

    There may be the facility to deposit entire body's there or to take/collect samples. They have been looking at similar arrangements in other countries (and one for MS in Scotland)
  11. muffin

    muffin Senior Member

    I think I did contact WPI about my body post-death for research use..

    IF i can remember correctly (NO brain here) I did contact WPI because I knew they had an extensive tissue bank and assumed they might want bodies. I think their response was something like "not at this time". But I can NOT remember.
    I may update my will and leave my body to the closest Medical school (after first contacting them and going through their hoops, etc) and ensure that my huge medical file is noted and can be found with my Internist - the one person I have seen consistently since CFIDS onset 15 years ago and who is most aware of my conditions as well as CFIDS. I might also leave a note in my medical file stating that I want my medical file provided to any researcher, organization and the medical school I designated upon their request - privacy factors may enter into releasing my medical file after my death so I don't want that file locked up with all the good information and insights locked away with it.

    If/when I locate some place that will take a CFIDS body I will make sure to spread that information here and on all other CFIDS websites since I am certain that many of us would LOVE to have our bodies used for research. I know that I want my body used for research since I have family and the genetics is there - ready, willing and able to destroy the lives of my siblings, niece and baby nephew. I also do NOT want anyone else to suffer in the way that I (and YOU ALL) have suffered.

    Please remember this request if anyone should come across a researcher or organization that would take and use a CFIDS body. Our bodies have so much information within them, it would be a horrid waste to not provide a CFIDS body(ies) to research.
    crittercherub likes this.

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