Japan ME Association president Mieko Shinohara authored the Foreword to the February 2016 issue of the Japan Council on Disability’s (JD) monthly journal, Subete no hito no shakai. Ms. Shinohara is on the board of JD; board members of JD and the Japan Disability Forum (JDF) take turns supervising the journal’s Foreword section.
The Ministry of Health, Labour and Welfare’s 2014 patient survey revealed that 30% of ME/CFS patients are severe patients who are bedridden or nearly bedridden. Notwithstanding the severity of the disease, patients have long suffered from being treated as malingerers. A study published in 2011 in the medical journal The Lancet further spread the erroneous notion that ME/CFS could be overcome by simply changing one’s beliefs by concluding that Cognitive Behavioral Therapy and Graded Exercise Therapy were effective to treat ME/CFS.
In October 2015, an article regarding significant flaws in the study was posted on a Columbia University medical blog. These included: changing the protocol for assessing the study data during the study, selection of study participants using diagnostic criteria that encompasses persons who do not have ME, and conflicts of interest created by the main study investigators’ financial and consulting relationships with disability insurance companies. As a result, British and American researchers and patient advocacy groups are seeking corrective action, including a re-analysis of the study data and a retraction of the study.
Amidst the controversy, the U.S. National Institute of Health (NIH) announced in late October 2015 that it would advance ME/CFS research and that the National Institute of Neurological Disorders and Stroke (NINDS) would lead ME/CFS research within NIH. Moving research on ME (long classified as a neurological disorder under the World Health Organization) under the leadership of the United States government’s national neurological institute was a ground-breaking development. Japan should also advance research on ME/CFS as a neurological disease. The reason is straightforward: a neurological disease cannot possibly be cured by changing one’s personal beliefs.
It is likely that the Lancet study will eventually be retracted, and that the disease name will also change as research progresses and the pathology of the disease becomes better understood. Japanese neurologists have recently started serious research on ME. No matter how severe their disease, ME patients strongly desire to return to their careers and contribute to society. The Act on the Elimination of Discrimination against Persons with Disabilities will come into effect in April. We will also continue to work to break through one barrier after another towards equal participation in society.