Morbid Topic. But I wanna know.

Discussion in 'Fibromyalgia Main Forum' started by meowee, Mar 16, 2009.

  1. meowee

    meowee New Member

    Hi all.

    I have a question that I have not been able to find an answer for anywhere.

    When I die, I want my body to go strictly to Fibro research. Not to a medical school... but to a place that is doing ONLY FM research.

    Can anyone help me here? Do you know of a school, lab, hospital, etc. that does that.

    I feel it is THE only way they will get to the bottom of this dreadful illness that is slowly taking away my life, my family and all the things I love.

    God bless
    Thank you for ANY help.
  2. loto

    loto Member

    I don't know what to tell you, if there is such a place that exists at this time! There should be though, there are research places for everything else. What I do know what to tell you is this: Thank you so much. What a wonderful idea! Makes me want to consider this also. I would probably have to make this a legal document, because I don't know how my family would feel about it. Thanks again!!
  3. outofstep

    outofstep Member

    There is an old Karen Lee Richards article about this, hopefully the info is still valid:
    Sun Health Research Institute, supposed to be first FM tissue bank. They are in Sun City, AZ 623-875-6528.
  4. meowee

    meowee New Member

    I thank you for your responses. I am going to look into them and try to do some research on my own. I have stated this as my wish when it is my turn to go.

    I pray nobody else has to get stuck in life with this dreaded syndrome.

    God bless.xoxox
  5. ladybugmandy

    ladybugmandy Member

    meow....i also want my body to go to CFS research - its really important to me. someone told me to put it in my living will. otherwise, i'm pretty sure won't happen.

    i know the whittemore peterson neuro immune centre in nevada has a tissue bank for CFS but i am not sure if there is one for FM. perhaps you can contact them and find out.
  6. AuntTammie

    AuntTammie New Member

    it's great that you want to do that,and I'm glad you asked about it on here, bc I bet there are others who never even thought about doing that, but might now that you gave them the idea
  7. nixon

    nixon New Member

    I think it's a great seems like there should be someplace like that around. If probably will be in the future, especially if they don't come up with some answers as to why we are all so sick!
  8. jasminetee

    jasminetee Member

    I want to donate my body for research for CFS and FMS too. The Whittemore/Peterson Institute is my first choice. I ordered a Living Will off the web but can't figure out how to fill it out. Every time I ask my family to help me they don't. Then other things come up and I forget... you know how it is. I need to get it filled out. We need people to sign it or something. Has anyone done this?

  9. Yet,. anyways...

    Anyone here, who has watched the documentary "I Remember Me" (cannot recommend this video enough, for EVERYONE to watch.!!!)

    Can tell you, that, the doctor on the documentary that witnessed with his own EYES (and ears, stethoscope, etc!) the 'outbreak' in the 80's... Lake Tahoe area (FOGGED)...

    That doctor, saved blood, tissue, brain slices, (I believe), basically EVERYTHING he COULD, (still had it, in a freezer during the documentary) of patients of his, who had passed, of different reasons...

    In the documentary, he (very angrily) tells of how he SENT SAMPLES OFF, to either the CDC, or NIH (don't remember, WHO???), but, was told that basically, they had neither the : time, finacial capability.. NOR THE INTEREST!! in studying any of his samples.!

    This doctor, is bound and determined all of this get researched *somewhere* and *somehow*... but, he is one doctor, against the world, (it seemed)....

    So, I don't know if anyone would even keep samples, let alone, our bodies, when we die someday...

    Things may change, but, from "I Remember Me".. it doesn't seem like it has for now, nor that it will, anytime soon- with that response of not having time, research funding, nor *interest* in the matter....

  10. jasminetee

    jasminetee Member

    I own the DVD "I Remember Me" and watch it from time to time. I recall the scenario you're talking about, maybe it was Dr. David Bell? I know he was in that movie.

    At least we have the Whittemore/Peterson Institute finally now. There's hope for us yet.

  11. spacee

    spacee Member

    He and Cheney were together at Lake Tahoe. And Peterson has at the new clinic blood from the Lake Tahoe time.

    Dr. Bell is in New York.

    The NIH has some of my blood already and hasn't cared enough to do anything. Said they would let me know. This was an early 1990's study of low t-cell count.

  12. ladybugmandy

    ladybugmandy Member

    teekjay...i made a will years ago. you just need 1 or 2 witnesses to sign it i think....i didn't do that part lol

    i once emailed the WPI to ask how to donate my body after death but no one got back to me.

    i accidentally found mr. whittemore's private cell # on the net....i am tempted to call LMAO
  13. jasminetee

    jasminetee Member

    it was Peterson, duh! Brain fog.

    "Yes, Dr. Petersen sighs, investigators from the CDC in Atlanta looked into the Lake Tahoe outbreak: "They came out here and skied and looked at a few charts." The conclusion was that Chronic Fatigue Syndrome was psychosomatic, or hysterical, or misdiagnosed. We are reminded that until the 1950s, multiple sclerosis was also considered a hysterical condition. "

    Yeah Sue, I don't have too many people that can sign it either. I could possibly ask some neighbors I barely know. I think my folks said they can't do it because it needs to be signed by someone closer to my own age.

  14. stschn

    stschn New Member

    I've been thinking about this for quite some time. Why burn up what might be able to help others? I plan on talking to Dr. Montoya at my next appointment as he and Stanford have done so much for me.
  15. rachel76

    rachel76 New Member

    The National CFIDS Foundation have asked for any patient with ME who is undergoing sugery to donate tissue samples of bone marrow or spinal fluid to help them with their research, I do not know if I am allowed to post the web page about it here but You should find it if you google "National CFIDS Foundation" and "tissue".
    They've never asked for anyone to donate their whole body to research though.