It would appear that US residents are able to donate their brain tissue for ME/CFS research.
During the Q & A session after an ME/CFS Roadmap presentation, an National Advisory Neurological Disorders and Stroke Council member mentioned the need for brain and spinal cord tissues to allow for studies into “transposable elements. endogenous retroviruses and epigenetics”. It transpired that it was possible and, in fact, the rational and pathway to donation appear in the May 2024’s Report of the ME/CFS Research Roadmap Working Group of Council.
One point was that some elements of pathology can be examined only with autopsy studies. Microstructure abnormalities and chemical imbalances can typically not be assessed with noninvasive imaging. Donated brain tissue is maintained by the NIH NeuroBioBank. There are multiple centers throughout the U.S. that can coordinate accepting donations, with good geographic coverage. Registration for the program is managed by the Brain Donor Project , which can also coordinate whole-body donations. At present, the number of brains of ME/CFS cases available in biobanks is quite small.
Report of the ME/CFS Research Roadmap Working Group of Council – May 2024 p46
Donation is open to US residents who are over 18 years old. As part of the pre-registration process with the Brain Donor Project, prospective donors are asked if they have a ‘neurological disorder’. If ‘yes’ then tick boxes allow (amongst other options) fibromyalgia, Lyme disease, ME/CFS, and MS to be selected. The NIH NeuroBioBank is NIH-funded and was established in September 2013 as a national resource for investigators utilising human post-mortem brain tissue and related biospecimens for their research in order to understand conditions of the nervous system.
News of the US facility comes only shortly after the launch of a new donor programme specifically for ME/CFS in the Netherlands – the Netherlands Brain Bank for ME/CFS (NHB-ME/CFS). That initiative also aims to collect brain tissue and make them available to researchers worldwide.
