I want my brain tissue banked after I die - Advice?

[WearyHSP]

I'm in the States. I don't have CTE, but Like CTE I have a chronic illness that can't be proven until death once brain tissue is analyzed.

My motives are twofold:
I confess, I just want it proven that I have this illness, because it's been 24 years of being gaslighted and no one believing me.
But also, there's scant information on CFS/ME, and the few autopsies done on people with CFS/ME have been very telling. I'd like to add to the sparse research by providing my brain tissue for study.

That said, from the limited research I've done, it's expensive and needs to be done relatively quickly after death. My illness is a Neuro-immune disease so my Executive Function is poor and it's hard for me to do thorough web searches to learn more.

No idea how/if suicide methods, other than the obvious shooting oneself in the head, might affect the potential of donating brain tissue.

I can see there are people on the forum who are intelligent who might have some thoughts to throw my way. I don't have high hopes for being able to donate my tissue, but I'd really like to if I could figure out how to set that up in advance. I'd like to be useful!

 

[Soulseer]

I have read your words and I feel that you have a need to prove your ailment to the world. You feel as if your death would somehow validate your suffering and your existence in this unforgiving world. I (and the world) do not know of your ailment, but I, feel your pain since you felt the need to etch your thoughts permanently onto the internet void. I have no answers for you, but I have read your words and you are not forgotten. You have nothing to prove. Your pain is valid enough to be true.

 

[wanttogetonthebus]

I'm in the States. I don't have CTE, but Like CTE I have a chronic illness that can't be proven until death once brain tissue is analyzed.

My motives are twofold:
I confess, I just want it proven that I have this illness, because it's been 24 years of being gaslighted and no one believing me.
But also, there's scant information on CFS/ME, and the few autopsies done on people with CFS/ME have been very telling. I'd like to add to the sparse research by providing my brain tissue for study.

That said, from the limited research I've done, it's expensive and needs to be done relatively quickly after death. My illness is a Neuro-immune disease so my Executive Function is poor and it's hard for me to do thorough web searches to learn more.

No idea how/if suicide methods, other than the obvious shooting oneself in the head, might affect the potential of donating brain tissue.

I can see there are people on the forum who are intelligent who might have some thoughts to throw my way. I don't have high hopes for being able to donate my tissue, but I'd really like to if I could figure out how to set that up in advance. I'd like to be useful!

I plan to register as a brain donor here https://braindonorproject.org/ and CTB through N. Both N and SN are quite lethal though they both have a neuroprotective effect which might make these methods more suitable for brain donation. My body is not likely to be discovered for at least a few days, so this might make my brain useless to science or ineligible for collection, but hey, my wellbeing comes first. Hopefully, they can learn something and progress science from my f'ed up long COVID brain.

 

[WearyHSP]

I plan to register as a brain donor here https://braindonorproject.org/

wanttogeton the bus, Thank you! I do search online but I must be terrible at it. I also didn't find SS until it was shared by NYT though I'd been searching off and on for awhile.

Just FYI, people in the CFS/ME community are pretty certain long Covid is the same as CFS/ME. Perhaps it's wishful thinking, because then Myalgic Encephalomyelitis might get some actual funding.

Very sorry you had a bad reaction to Covid.

have read your words and I feel that you have a need to prove your ailment to the world. You feel as if your death would somehow validate your suffering and your existence in this unforgiving world.

Hi Soulseer. Thanks for your kind thoughts.

I don't think my death will validate my suffering. My family has ignored me my entire life, that won't change. I have a diagnosis, and my family hasn't told me they don't believe me, they just have never even once been willing to discuss it. For the 15 years before I got a diagnosis they, and even my friends, gaslighted me ("It's all in your head".) Unfortunately my illness is a match for my childhood trauma that happened at age 7, and thereafter no one in my family listened to me or believed me. I was constantly silenced... so it's a trigger pattern.
I want to be heard and understood.

But also, for 15 years doctors didn't believe me. Now that it's been 24 years, there's still only 10 doctors in all the US who specialize in what I have. My functional medicine doctor recently left her practice and I'm desperate trying to replace her, but the only functional medicine doctors in my area are cash only, and I can't afford that. Regular MDs have done great harm because they're not trained and tend to be arrogant rather than curious.

Hence my confessing that I'd like to have some proof for my own personal reasons. But proof of a brain infection won't change how my family will view me after I'm gone - they're too self-absorbed and require constant fake positivity. It could though provide more insight into an illness that gets less federal funding for research than male pattern balding... which isn't even an illness.

And again, I want to be useful. If providing brain tissue for research is possible, then that's a way I can help others who suffer as I do.


I just have to figure out how to ctb and do it in a timely way to save my brain tissue if at all possible.