Trial By Error: My Visits with Alem Matthees
7 MAY 2018
By David Tuller, DrPH
During my week in Perth, I visited Alem Matthees twice. Alem is the patient who successfully fought Queen Mary University of London for access to raw PACE trial data; reanalyses of these data have exposed how the extensive outcome-switching led to the improved results reported by the investigators.
Alem’s health has declined dramatically since that 2016 tribunal case. He is bed-bound. He sits up every couple of hours to drink a nutrient-laden smoothie his mother, Helen, prepares from a broccoli soup base. The rest of the time, he is lying down, resting or sleeping. When he needs to, he can get himself onto the portable toilet next to the bed.
Alem no longer speaks, reads, e-mails, watches TV or listens to the radio. His mother used to read to him, often e-mail messages and articles with updates from the ME world. At one point she even read him sections of Osler’s Web. More recently, being read to became too much for Alem. But he remains aware of what goes on around him and what people say. In response to questions and comments, he offers a quick hand signal—thumbs up or down. He can write brief notes to let Helen or others know what’s on his mind.