There are an awful lot of online discussion groups for various medical problems. It is not uncommon for members to share new research in hopes of better understanding their own condition. In some cases, they are pursuing alternative remedies because conventional treatment and proven science are failing them so badly. Getting solid information about what is likely actually happening in their own body can be empowering.
It isn't the sort of thing most policy makers or business makers want to hear. People in such positions tend to be incredibly controlling and actively against the idea of empowering patients to take better care of themselves through better understanding of their condition. But it is actually a low cost, effective way to get better quality of life in the face of coping with a chronic, likely incurable, condition.
It isn't the sort of thing most policy makers or business makers want to hear. People in such positions tend to be incredibly controlling and actively against the idea of empowering patients to take better care of themselves through better understanding of their condition. But it is actually a low cost, effective way to get better quality of life in the face of coping with a chronic, likely incurable, condition.
Written in reply to this, which is now dead, so I cant post it there: https://news.ycombinator.com/item?id=14896446