One of the best ways to advance research toward finding answers about neurologic disorders is through post-mortem brain donation – and the U.S. National Institutes of Health (NIH) reports an urgent need for donations from patients who’ve suffered with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). Arranging in advance to donate your brain when you die could speed the pace of breakthroughs.
The Brain Donor Project is an innovative, not-for-profit developed to support the NIH in making available high quality brain tissue for neurologic researchers. Our focus is on raising awareness of the critical need for this precious tissue and on simplifying the process of brain donation upon death.
More has been learned about the human brain in the last 20 years than in all of recorded history, but there is so much yet to discover. More than 50 million Americans suffer from a neurologic disease or disorder – that’s one in six of us. And the answers simply can’t come fast enough. You may not be aware that…
- Signing up to an organ donor does not mean your brain is included. Separate arrangements need to be made for brain donation.
- Donating your body for anatomical study does not mean your brain will be used for neurological research. Again, separate arrangements are needed.
- People who have not been diagnosed with a neurological disorder are encouraged to donate as well. Control brains are just as valuable.
- Brain donation is not disfiguring – an open casket is still an option.
- There’s no additional cost to the family for brain donation.
Please consider making this precious gift. Visit braindonorproject.org to learn more and to begin the process of arranging for brain donation. Thank you for considering this invaluable gift as a way to advance science.
10 thoughts on “Donate Your Brain to Find a Cure for ME/CFS”
Thank you for this information. The project sounds promising. I’m curious about the following statement. Do you have a source for it? “…the U.S. National Institutes of Health (NIH) reports an urgent need for donations from patients who’ve suffered with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS).”
Hi Liz – Appreciate the feedback. This blog post from last week, by Dr. Francis Collins, Director of the NIH and Dr. Walter Koroshetz, Director of the National Institute of Neurological Disorders and Stroke (NINDS/NIH) will add some perspective: https://www.ninds.nih.gov/News-Events/Directors-Messages/Featured-Director-Message
I have been looking for someplace to donate my body for CFS/ME research. I think this disease effects nerves, immune system, gut, etc. and would like to find someone who would take the whole body for this type of research.
I got the forms but they don’t mention ME CFS. So I’m not sure how to proceed.
Hi Renee- I am going to contact the author to find out next steps and will respond here and send you an email as soon as I hear back.
“I’m not sure what forms are being referred to…but I do know that it’d be impossible to list all of the potential neurological disorders/diseases that are needed. A potential donor is invited to specify/identify their diagnosis, and the medical records release that a donor signs allows researchers to confirm that diagnosis. Once it is confirmed, that brain is categorized as that specific type of tissue, and the brain tissue is then distributed to scientists requesting that specific characterization.”
I am surprised that spinal cord is not mentioned. This illness also shows up there.
i ask you MEACTION
to make sure each country which is involved in research should pay focus on it
of course NOT just the brain is interesting
and it have to make sure this donation is for the favour of ME and nothing else
WOULD LIKE TO DONATE BODY AND BRAIN TO ME/CFS RESEARCH UPON DEATH. ANY SURE DETAILED INFORMATION OF THE PROCESS IN ACCOMPLISHING THIS WOULD BE GREAT. I’M IN USA.
11 YEARS IN ME/CFS, HAVE NO DOCTOR DIAGNOSIS AS THERE ARE NONE IN MY AREA. I NEED NONE, I KNOW THIS IS WHAT I HAVE. THANK YOU 🙂
How do we pay for this? Does the research facility pay or the patient. I would love to donate my body, so no one ever has to suffer with this.
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