Bill MacPhee, the publisher of SZ Magazine (formerly known as Schizophrenia Digest), has just launched a campaign to change the name of schizophrenia in order to, as he says, “stop stigma.” The name change suggestion is not new, but what is different is his proposal to change the name to MacPhee Syndrome.
Mr. MacPhee argues, “When people hear the word ‘schizophrenia’ they think the worst. They research the word and find the media reference people like James Holmes the Colorado movie shooter or John Hinckley who shot president Reagan.” He goes on to say that when people think of schizophrenia, they never think of someone like him. Mr. MacPhee does have schizophrenia, but he is also the publisher of Magpie Media in Fort Erie, Ont., and a man with a wife and three kids.
His campaign is using crowd source funding to try to raise $75,000 towards a North American tour kicking off April 2 in his home town of Fort Erie, petitioning The Diagnostic and Statistical Manual of Mental Disorders (DSM) and launching a letter writing campaign to encourage them to change the name in their next revision.
The name for schizophrenia was already changed in Japan in 2002. According to a description of that name change process in World Psychiatry, the old name Seishin Bunretsu Byo (“mind-split-disease”) was replaced with Togo Shitcho Sho (“integration disorder”). Before that change, only 7% of doctors always told their patients diagnosed with schizophrenia that they had the disorder, while 37% only told the families and not the patients. Japan had a long history of negative attitudes towards schizophrenia and inhumane treatment to those suffering from it. Prior to 1950, schizophrenia patients in Japan were incarcerated with restraints, so it was understandable that doctors were reluctant to provide that diagnosis. After the change of name in 2004, almost 70% of patients were told their diagnosis.
I haven’t been able to find any data on how well those with schizophrenia are doing in Japan as a result, although the treatment guidelines developed for the new name now recommend community-based care instead of hospitalization; a treatment plan including medication and psychosocial intervention; and therapeutic alliances with other professionals.
It would be interesting to know if as many Japanese with schizophrenia wind up untreated, homeless and in prison as is the case in North America. Our system, as a Toronto Star article on the mentally ill in jail noted, is considered medieval by experts. Criminal defence lawyer Frank Addario is quoted as saying, “It’s like putting you in jail for having cancer.”
In the Western Hemisphere, the term salience syndrome has been suggested as an alternative to the term schizophrenia. “Salience refers to how internal and external stimuli are consciously experienced and how, unwilled or overinclusive attention to some stimuli can become perplexing and foster a search for explanations which are later recognized as delusional” according to a 2013 published research study that attempted to see if changing schizophrenia to salience syndrome would in fact make any difference.
The study found that it would not!