Very important new project announced on Jennie Spotila's blog:
http://www.occupycfs.com/2014/07/07/mecfs-mortality/
It's being run by researchers at DePaul University (Dr Leonard Jason's place) and with Billie Moore of the NJ CFS Association, who lost her son to ME by suicide after 20 years of illness.
As Jennie points out, it's common for doctors to say that ME isn't fatal. A very few people have had ME/CFS on their death certificates but we don't know if ME causes earlier than normal death through cancer, heart problems, and so on, and we don't know the suicide rate. We need to know these things and governments aren't doing this research.
I don't know if this is a US-only project - I've posted that question (still in moderation) on Jennie's blog. I suspect it would be - to get mortality rates, you need to know the population you're sampling.
http://www.occupycfs.com/2014/07/07/mecfs-mortality/
It's being run by researchers at DePaul University (Dr Leonard Jason's place) and with Billie Moore of the NJ CFS Association, who lost her son to ME by suicide after 20 years of illness.
As Jennie points out, it's common for doctors to say that ME isn't fatal. A very few people have had ME/CFS on their death certificates but we don't know if ME causes earlier than normal death through cancer, heart problems, and so on, and we don't know the suicide rate. We need to know these things and governments aren't doing this research.
I don't know if this is a US-only project - I've posted that question (still in moderation) on Jennie's blog. I suspect it would be - to get mortality rates, you need to know the population you're sampling.