Autopsy Options

[SDSue]

Because of ME/CFS my financial and personal situations have changed dramatically. Thus, I am redoing my will, power of attorneys, and final wishes.

I know I am not alone in wanting my body to be donated to ME/CFS research, with a full autopsy so that fellow patients and my children might have better answers for their own futures.

Does anyone have suggestions on the logistics of this? Is there any organization or research institute interested in our sorry bodies and brains? Do we need to do some leg work to find an entity who will work with those of us who wish to donate our bodies? (I am in the US) As I am planning to provide funding for this, it seems prudent to have the details ironed out.

Thanks.

 

[Sushi]

This is also being discussed here. But I think it is a good idea to move the discussion here and separate it from Vanessa's Online Vigil.

Sushi

 

[SDSue]

This is also being discussed here. But I think it is a good idea to move the discussion here and separate it from Vanessa's Online Vigil.

Sushi

I missed that. Thanks!

 

[ukxmrv]

I don't know of anyone in the USA sorry. We have had a few autopsies in the UK. Dr Shepherd from the MEA , I think has organised these in conjunction with Dr Chaudhuri.

The body needs to be collected quickly and it may be too late by the time someone finds a written will. There may also be problems if one commits suicide depending on the method used (toxicology and contamination etc).

In death we are often treated as badly as in life. "Just" because we die there is no automatic interest in our cause of death in terms of ME. I don't think that we can assume that an adequate autopsy will always be carried out for that reason even if we want one.

 

[Sushi]

Since my doctor (KDM) is a "Professor of Physiology, Pathophysiology, Medicine, Internal Medicine and Cardiology" and has great lab access, I will be asking him about this. I have already put it in my will but do need to make my intentions well known to "whomever might be in charge."

Sushi

 

[Gingergrrl]

@SDSue I asked about this in another thread too and Sushi suggested talking to my doctor. I am thinking that your doctor may have some feedback on this as well. (I know we have different doctors but they both may have some knowledge of this topic and if not- I really am not sure!)

 

[SDSue]

In death we are often treated as badly as in life. "Just" because we die there is no automatic interest in our cause of death in terms of ME. I don't think that we can assume that an adequate autopsy will always be carried out for that reason even if we want one.

Agree completely.

@SDSue I asked about this in another thread too and Sushi suggested talking to my doctor. I am thinking that your doctor may have some feedback on this as well. (I know we have different doctors but they both may have some knowledge of this topic and if not- I really am not sure!)

Great idea. Let's all talk to our individual docs and then share what we find?

 

[SpecialK82]

As I understand, the Solve ME/CFS Initiative takes bodies, but please double check on that if interested. I'm interested in donating too. I am finding that this choice is difficult for some loved ones.....

 

[SDSue]

As I understand, the Solve ME/CFS Initiative takes bodies, but please double check on that if interested. I'm interested in donating too. I am finding that this choice is difficult for some loved ones.....

Hopefully the loved ones will come to understand that this is a selfless way to invest in their futures and the futures of their children. But you are right, it's a tough one!

 

[EMilo]

I emailed the Solve ME/CFS Initiative to ask about body donations and also requested a paper consent form for their tissue biobank. I didn't even know this existed! Thank you, @SpecialK82 I'm going to fill one out for me and my (healthy) husband and mother. http://solvecfs.org/solvecfs-biobank/eligibility/

I also filled out the donation form for the The Human Brain and Spinal Fluid Resource Center in LA, the closest brain bank to where I live. Here's a list: http://www.ninds.nih.gov/.../voluntary.../vol_org_sub_BB.htm But, it's not ME specific, so I think the best bet is to contact ME experts. If anyone is seeing an ME expert, could you ask about this during your next appointment? When I have the energy, I'll try emailing the big names.

 

[SOC]

If anyone is seeing an ME expert, could you ask about this during your next appointment? When I have the energy, I'll try emailing the big names.

I will ask Dr Klimas when I see her on Thursday.

 

[EMilo]

I will ask Dr Klimas when I see her on Thursday.

@SOC Thank you! Please let me know if she has any insight.

 

[SOC]

@SOC Thank you! Please let me know if she has any insight.

She strongly recommended that we donate to the NIH Brain Bank, specifying ME. She is going to email me more information. I'll pass that on as soon as I get it.

 

[SOC]

She strongly recommended that we donate to the NIH Brain Bank, specifying ME. She is going to email me more information. I'll pass that on as soon as I get it.

Still waiting on that email. I may have to get in touch with INIM again and remind them we are waiting on this information.

 

[EMilo]

Still waiting on that email. I may have to get in touch with INIM again and remind them we are waiting on this information.

Thanks, @SOC ! I will look through my notes and see if I have anything about the NIH brain bank. My research got stalled when I went down too many rabbit holes.

 

[jsfm]

I used to work on an autopsy study here in Seattle through UW. I could inquire to see how they got that setup if that would help. I'm confident that it was through funding from the NCI.

 

[minkeygirl]

I'm redoing my paperwork and tissue donation came up

Does anyone have an update for this?

 

[minkeygirl]

I looked at the NIH Brain donation site. They need the brain within 24 hours.

 

[Strawberry]

I looked at the NIH Brain donation site. They need the brain within 24 hours.

What if I have been brain dead for several years?

Sorry... (not really ) But in all seriousness I need to get this dealt with also. I lost two siblings in one year, and I made it clear that I wanted cremation at that time, but this sounds better to donate to science. I need to make sure my family knows that I have changed my mind. And do the paperwork.

 

[leela]

Does anyone have updates on this subject? I'm doing my death-paperwork and would really like my body to contribute to something useful for others down the line.