DONATING BODY to SCIENCE?? re: CFIDS/FM - is it possible?

Discussion in 'Fibromyalgia Main Forum' started by victoria, Dec 27, 2005.

  1. victoria

    victoria New Member

    I haven't had the chance to research this, hoping someone might know the answer right off:

    I am wondering if it is possible to donate one's body to CFIDS/FM researchers for autopsy if I were to die unexpectedly? It seems that this might be a good thing to do if possible.

    I'm asking because someone in my local support group just died unexpectedly; she had not been doing well during the past year, and had fibro. So it has me really thinking about this... it would be nice to at least do something good as a last gesture.


    I just found out she had seen the doctor yesterday, she had a staph and strep infection... would explain a lot in conjunction with her Fibro I would think... really wondering what an autopsy will reveal IF they look at EVERY thing.[This Message was Edited on 12/27/2005]
  2. karatelady52

    karatelady52 New Member

    Whew! I was hoping you weren't leaving us anytime soon.

    I would miss your jokes and great articles and words of wisdom!!

  3. darude

    darude New Member

    They didn't want it!!!! Anyway definately going to donate to something probably brain. Hopefully we could fight to get our bodies donated for theses dd's.
  4. Bambi

    Bambi New Member

    interested in taking bodies now or what kind. They used to have certain things they'd be studying. I know a friend had signed up to do that, she had emphesema and had had Rheumatic Fever as a child. Then they told her they took whatever parts they needed and her sister would have to go pick up the remains (or send a mortuary) and pay to have them disposed of. She thought they'd pay for all that for the body use. Once she found that out she withdrew her offer. She did look into several places and it was the same with all of them and they all had certain things they were looking for. SO, I'd just contact some of the
    teaching colleges and ask.
  5. victoria

    victoria New Member

    My guess is that a 'regular' autopsy will not go further than seeing what the immediate cause of death was.

    I did a google search also and couldn't find anything at all. What a shame... you would think it would be helpful to look at everything in depth and see what all a person had wrong and what similarities there were to others dx'd with the same thing.

    The funny thing is that the CDC, as far as I understood, doesn't think we should donate blood if we've had the dx of CFIDS or Fibromyalgia... what does THAT tell us!?!!!

    I also found that if one has had hepatitis of any kind you should not donate blood, altho you have to look hard for that info - does that mean one never gets rid of it either?

    I DO have on my driver's lic that my organs should be donated to another if possible if I were to die... but should they be, really? If we as a population have one of these stealth diseases, hate to think of passing it on that way!

    I don't really think this is a morbid topic personally... just want to do the right thing if at all possible!

    Thanks again,
  6. JLH

    JLH New Member

    Note: some of my reply below may be too detailed, or gross, for some to read--I hope it doesn't bother anyone.

    You can request that your body be donated to science, but not for any particular research. You could probably call your local funeral home and ask what he would do if a person's will just stated that he/she wanted his body donated for science. Do they call medical schools? Do they have a list of research organizations who want them?

    You can specify a certain medical school if you want to, too.

    When my daughter was in medical school, they had to have a class called "Gross Anatomy" in their freshman year. Each team of students (3-4 on a team) were given a "body" for the course. These were bodies who had been donated to their school for "science" and/or "teaching".

    There were set things that all teams did to the bodies for learning purposes. Also, along the way, each team had to determine what the cause of death was in their body.

    FYI, if you are wondering, the entire time that the students work on the bodies, the head remains covered. This is out of respect for the deceased person, and to make sure that he/she is not a relative of the students.

    At the end of the course, the teams are graded on if they guess the cause of death of the person. And ... they also have to indicate all of the other medical problems that the person had.

    My daughter said it was really easy to identify the smokers, those with cancer, etc. I don't know if they would be able to identify FMS or CFS in a deceased person or not since it cannot be diagnosed by any normal, routine tests!

    If there were not enough bodies given to the school through donations, then people who were homeless, unidentified, or those who had no living relatives and had to end up being buried by the county were used--I can't state for sure that I have this 100% correct, so don't get upset if I misquoted something that my daughter told me!

    I don't think there is a charge to donate your body to science or to a teaching school. There would probably be a charge from a furneral home to prepare the body for the school; however, I am sure it would not be anything close to the cost of a funeral today!


    Edit - I forgot to mention that when the class was over, the families were notified that the teaching session involving their loved one had been completed and if they wanted the body back for any type of burial service, they could have it; otherwise, since it had been donated to the school and it was not really their possession, they would take care of the burial.

    The students also had a memorial service for all of their deceased and were grateful to them and their families for enabling them to train and learn due to their generosity after their death.

    In other words ... the school tried to do their best to show respect for the deceased in every way possible.

    [This Message was Edited on 12/27/2005]
  7. darude

    darude New Member

    I certainly would not donate organs also can't donate blood. I would give body to research.
  8. renae1979

    renae1979 New Member

    From my work in estate planning and probate, it has been my finding that you can specify a facility (such as a certain teaching school, etc.) to receive your body, but you can't necessarily designate what type of research will be done. Your state's office of vital statistics or similar office should have designation forms available.
  9. victoria

    victoria New Member

    This has helped to clear my thinking at least in part; I am going to find out ASAP how to change my and my son's driver's licenses about organ donation at the very least.

    Thanks again,
  10. Smiffy

    Smiffy Member

    Hi, I've left my body to my local university. They sent me a form to fill in & return. This is not specifically for CFS/FMS research, but mainly for the training of medical students.(They are unable to accept bodies in an unsuitable condition, e.g. those that have undergone autopsies.) The law in the UK states that a next of kin also has to give permisssion. There is an annual ceremony at the university to honour those who have donated their bodies. The bodies are cremated after being disected.

    I don't think this is a gross subject at all; we need to train our medical students & we will have no further use for our bodies after our deaths.

    PITATOO Member

    Donate my body to SCIENCE FICTION
  12. victoria

    victoria New Member

    where they just might find you are half human-half alien resulting from ---?

    Actually somebody elsewhere just told me that someone was able to donate spinal fluid and brain tx to a major CFIDS organization, and they were delighted to have it to do research - not sure what profile the person fit or what organization. I will find out over the next week if this is a possibility for those of us wanting to do something like this in the future.

    all the best,
  13. victoria

    victoria New Member

    I definitely DON'T wanna be experimented on while alive...

    horrors! I've been the subject of too much experimentation by well-meaning doctors of all kinds, sadly!

  14. sofy

    sofy New Member

    I keep saying Im going to call our state medical school and ask for forms to donate my "no longer in use body" but never get around to it.

    Have been saying for years that Im going to enjoy in death what was denied me in life, the intimate relationship with a sweet young med student. Now I just need to make it happen.

    I can only have trust and faith that what learning experience will take place between me and the med student will someday make a real difference in the lives of the sick.

    The thought of that sure beats thinking of myself as fertilizing the plants or taking up space in an airtight box under the ground. What a waste.

    I hope the med student is cute and male, if not well maybe I can learn new things after death!!!!!

    I know, I have a wacky sense of humor but its what makes my life bearable. No matter how bad the situation if you turn it upside down and look at it there is usually a funny side.
  15. pam_d

    pam_d New Member

    ...passed away from a very rare, non-malignant brain tumor (was operated on & survived the operation for several months, then died of a massive stroke but blamed on the original tumor surgery).

    She donated her body (as per her request before her death) to Creighton University, I believe, in Omaha, Nebraska. I think organizations like CFIDS orgs., etc. do not want "bodies", but medical research institutes and schools often do.

    I think it was an amazing thing to do, BTW. I like to think some medical student out there learned something from her death.

    It CAN be done, but as others said, not necessarily to research a specific disease.

    Do some checking at schools/research hospitals in your area....

  16. Highlandrose

    Highlandrose New Member

    I, too have been thinking about donating my body for organs, research or teaching. Will have to check into it more. I've also been wondering if they don't want it for the organs, can I at least donate my skin to burn victims. Anybody have any ideas?

    Thanks for bringing up the subject. If nothing else, it's food for thought.

  17. CAAnnieB

    CAAnnieB New Member

    When I first thought about donation; I thought that I'd like to donate my body to the college I attended...They use "cadavers" (bodies!) for teaching Pre-Med & Physician Assistant students. (I was a P.A. major...never finished, unfortunately)

    After a close friend of ours needed a liver transplant; I changed my thoughts to wanting to donate any body part possible to those in need. I saw up close & personal the struggle of someone desperately waiting for an organ transplant. My friend came SO close to death. There are SO many people out there in need of vital organs! Besides the "big" organs; there is the opportunity to give someone sight who is blind, etc.

    When I read the discussion on this board awhile ago (this comes up every so often!) re: blood donation & organ donation, I came to a new position. I won't donate blood. However...I still feel strongly about donating body parts. I have put on my Driver's license that I am a donor, however the family or recipient should be told of my Fibromyalgia. This way; THEY can make the decision whether or not they want my parts! Somehow, I think that if it is a choice between certain death & life with the possibility of FM/CFIDS; they'd probably take the risk!

    This is just my opinion.

    Blessings & Hugs,
  18. CAAnnieB

    CAAnnieB New Member

    I understand your position. I'm proposing that the recipient or the recipient's family should be given the opportunity to decide if they would want my organs or not...knowing that accepting a "Fibro organ" MIGHT mean that they would develop Fibro themselves.

    I'm certain that if you asked my friend whether he would choose death versus receiving a liver from me...He'd accept my liver! My quality of life with this DD is WAY better than either being dead or being near death/ living with Hepatitis!

    I DO get your point, however I still think it should be a decision made by the organ recipient/ family. Yes, our DD's are nasty, but they are not life threatening. I have watched my friend suffer before and after his liver transplant. His quality of life is SO,oooooo much worse than ours. I've also seen patients die waiting for a transplant because of the shortage of organs.

  19. nancyann62

    nancyann62 New Member

    Dear All,

    It is possible and I have done it. After speaking to my doctor and getting his approval, my attorney took care of the paperwork. This is one way, in my opinion, we can
    help those who come after us and perhaps help the many who continue to suffer after we are gone.

  20. JLH

    JLH New Member

    I am all for (1) organ donations (especially from healthy individuals and (2) donating your body to science.

    I think every healthy individual should be an organ donor!

    Those of us who have health issues would be good to be on the "loaner" list, which I never heard of until now! I, too, agree that families should be given an option to take our organs, and that they would be glad to take an organ from us--and risk getting fms or cfs--than their loved one to die.

    Everyone should bring the organ donor issue up with their families and remind those healthy members to have it put on their drivers license as well as make all of their family members aware of their decision--you never know when there will be an emergency.

    P.S. My MIL is now 85. She was told that she had only 5 years to live when she was 65. She has so many health problems (but just keeps on ticking), but her main problem is just being plain evil. I wonder if we donated her body to science, if the med students, or university researchers, could find out what makes one person so dog gone mean??? Maybe I should include that question on the form we fill out! .... with a little note stating: "We've had her all these years, now she's yours!!!!" (with a sinister laugh!)

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