It really is true w/ #MECFS that the sicker you are, the less help you get. You have to be physically stable enough to research, find doctors, attend appts, fire doctors & find new ones, source & titrate meds, reorganize your whole routine & environment. No one else will do it for you. #SevereMEDay
Today is Severe ME day. I never thought that I could get this sick and be receiving LESS medical care. I never thought following the advice of clinicians could leave me mostly bedbound. I never thought I would lose the whole world this way.