JMEA held an in-person talks with Parliamentary Vice-Minister of Health, Labour and Welfare Fusae Ota at the Ministry offices on January 29, 2015. JMEA was represented by eight members, including three ME patients and one family member, each who braved the cold weather to attend.
Since this was JMEA’s first meeting with Vice-Minister Ota, we briefed Ms. Ota on the disease’s main characteristics as well as the serious situation of ME patients in Japan revealed by the Ministry’s 2014 patient survey.
We discussed last fall’s decision by NIH to move the leadership for ME/CFS research in the United States to the National Institute of Neurological Disorders and Stroke (NINDS), and the January signing of a Memorandum of Cooperation between NIH and the Japan Agency for Medical Research and Development (AMED), in which the agencies agreed to strengthen cooperative research efforts including in areas such as rare diseases and infectious disease treatments. JMEA requested that Japan take similar steps to advance research on ME as a neurological disease.
We told the Vice-Minister of the rising interest among Japanese neurologists to pursue serious research on the treatment of ME. As medical research on effective treatments is the government action that patients seek most, we requested that the Ministry support research on ME/CFS treatments. (We also mentioned the widespread effort by scientists and patients to challenge the PACE study and its conclusions.)
Our patient members also appealed to the Vice-Minister with specific comments about their personal experiences and desire for effective treatments as soon as possible:
“There are so few doctors who can even diagnose the disease that it took me years to receive a diagnosis. I would like research on treatment to proceed as soon as possible.”
“I have been mostly surviving on IV infusions five times a week for the last six to seven years. I would like treatment research to proceed while I am still living.”
“Most ME patients are forced to quit school and work. There are many patients who aren’t able to come to meetings like this are who are pressed by extreme financial hardship because they are unable to obtain any public disability assistance.”
The Vice-Minister shared that she had traveled to the U.S. to attend the signing ceremony for the NIH-AMED Memorandum of Cooperation. She also explained to us that while there have been shifts towards funding disability and welfare in the U.S., Japan remains a vertically-oriented, compartmentalized bureaucracy in which the moving around of government resources is not a simple matter.
At the same time, Ms. Ota understood the need for research on treatments, and commented that more “decisive politics” is being sought within government. She believed that learning the situation of ME patients from meetings like ours (from patients themselves) was the most effective, and that she would work diligently to understand the situation. She would convey the details of our meeting to the Health Minister.