As we begin 2023, we are proud to announce the Japan ME Association is joining our World ME Alliance. We are hopeful that this will be a fruitful relationship, extending our global reach as we build a stronger ME community together, and supporting the Japan ME Association in its activities.
The Japan ME Association has now been advocating for ME patients for 13 years. Founded as a patient association in 2010 and incorporated as a Japanese Specified Non-Profit Corporation in 2012, its members consist of ME patients, their family members, and other individuals who wish to improve the medical prognosis and quality of life of ME patients. Its work is supported by a talented team of medical researcher and clinician board members and advisors.
While it is a small organisation, Japan ME Association has made some major strides towards awareness of ME in Japan over this time, and provided significant support to both people with ME and educational materials for healthcare professionals. Former board members also directly contributed to promote medical research into ME as a neuroimmune disease.
The board consists of four individuals, three of whom live with ME and one of whom is a doctor.
ME is a deeply stigmatised disease in Japan, as it is in other countries, and many living with it feel they need to hide their diagnosis and illness, often depending on family for support.
The Japan ME Association has worked to address this by conducted surveys of patients, which has raised awareness of the support many with this disease urgently need.
Japan ME Association’s main focus is lobbying and advocacy, particularly targeted towards the Japanese Parliament and Ministry of Health.
It has had four petitions adopted by the Japanese Parliament, most recently with the support of 125 MPs. They continue to lobby, reaching out to professional medical associations, individuals in positions of power, and the growing the patient community in Japan.
It has also recently extended its work to grow awareness of the devastating impact of long COVID too.
We continue to look for more national ME organisations to join the World ME Alliance – if you are interested in finding out more look here.