Hi all. I haven't been able to be here much in the last few years as it's too much work for my brain. I'm asking for your help. I'm working on my will, which got me working on an endowment fund, mostly to help out patients whose needs aren't being met in full, but also to encourage others to do so, and also to improve visibility of ME and CFS and spread the word on just how seriously debilitating it/they are. What do you think is most important?
The other thing I'm working on is autopsies for all patients who want them, preferably done by our researchers, or with protocols for pathologists to follow and someone to collate the results for researchers. In the meantime the Brain Donation program in the US seems good - they're already looking at ME.
Could you please fill out this survey? All ideas welcome. I'd like to make this as useful as possible. MEFMBC was kind enough to do it up for me as even trying to redo it here and on other sites was too much.
https://docs.google.com/forms/d/e/1FAIpQLSdcIX7I_F9Gyj8S9VFVf4n3KaVOnWie590R-mqiyPqMIN5EdA/viewform
The other thing I'm working on is autopsies for all patients who want them, preferably done by our researchers, or with protocols for pathologists to follow and someone to collate the results for researchers. In the meantime the Brain Donation program in the US seems good - they're already looking at ME.
Could you please fill out this survey? All ideas welcome. I'd like to make this as useful as possible. MEFMBC was kind enough to do it up for me as even trying to redo it here and on other sites was too much.
https://docs.google.com/forms/d/e/1FAIpQLSdcIX7I_F9Gyj8S9VFVf4n3KaVOnWie590R-mqiyPqMIN5EdA/viewform