https://www.healthrising.org/blog/2...atigue-fibromyalgia-long-covid-brain-funding/ The NIH Wants Your Brain The NIH is looking for ME/CFS and fibromyalgia brains to better understand these illnesses The NIH wants your brain – it really does. (Not right now – later.) I don’t know when this happened but it’s happened. If you want science to make use of your brain to help understand what’s going on chronic fatigue syndrome (ME/CFS) or fibromyalgia after you’re gone there’s a way to do it. This interesting possibility arose during the Q & A session after the ME/CFS Roadmap presentation. After a NANDSC member strongly asserted – citing the need to look for things like “transposable elements. endogenous retroviruses and epigenetics” and damage to the brain and spinal cord that autopsies would be very helpful, Vicky reported that it is possible to provide ME/CFS brains to the NIH Neurobank. (Who knew?) Noting that suicide is an issue with ME/CFS Vicky alluded to the sensitive nature of donating one’s brain, but Lucinda Bateman popped saying she’d just had a conversation with an ME/CFS patient who simply wanted to help out the field if she could. It turns out that it’s remarkably easy (if not a little weird) to start the process. Click here to learn about the Brain Donor Project and here to begin the pre-registration process. After that you’ll receive an email with an information packet where you can more fully flesh out the details: your age, sex, health details, etc. ME/CFS, fibromyalgia, Lyme Disease and migraine are included. Long COVID is not. You must be over 18 and a U.S. citizen to apply.
The details per their website are that they want the brain harvested (through the back of the neck) within an hour of death. And that a family member or close friend has to call the harvesting team. They can harvest at a mortuary. But at this point, the logistics of this (unless you die at a huge hospital, preferably at the NIH) are a bit daunting. Especially in the hinterlands.
"Your Brain Holds Secrets" NYTimes, July 6, 2024 (https://www.nytimes.com/2024/07/06/...e_code=1.5U0.yG56.AQUoRkz7Ci-L&smid=url-share) More info on procurement: the local medical examiner or pathologist does the extraction of the brain and delivers it to a linked lab to be frozen. Within an hour of death is the goal. Medical staff or family to notify the brain donation network.
They should have been doing postmortem examinations of brains and other tissues since the 1980s clusters. Better late than never I guess.
I'm convinced brain and nervous system autopsy studies have real scientific potential. I strongly agree with Sid in that not studying this earlier is a massive failure.
