That someone is putting their all into this is encouraging. No one walking the face of this earth wants to live like this.
Sometimes it takes the child or friend of folks with big bucks getting a horrible disease for the money to target an orphan illness like ME/CFS.
A couple of years ago, wealthy folks named Whittemore whose daughter had the illness up a lot of money for ME/CFS at the time that it was thought that a retrovirus, XMRV, was the cause of the disease. Mr. Wittemore was a Nevada big-wig who gave a lot of money to Harry Reid and ended up in the slammer, unfortunately!