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“We deserve attention” – Mieko, Japan

I fell ill while studying in the US and was diagnosed with ME one and a half years after experiencing flu-like symptoms and extremely high EBV antibody levels. My current capacity is less than 5% of my pre-illness capability. I receive home care service for 9 hours every day from the government for free, but I had to fight very hard to get it. For about 10 years, I was almost totally bedridden, too weak to hold a spoon, so had to be fed by my helpers. I also fought for 2 years to get my wheelchair on which I lie down horizontally. Without it, I would have been housebound since 2005.

I have been ill for so long, I hardly think about my previous life. I think to keep mourning the past does not help me enjoy my life now. I am a founder of the Japan ME Association and when we started our organisation in 2010, no one recognised ME as a neurological disease in Japan. But we found a neurologist at National Institute of Neuroscience who started research in 2015 and now he is almost ready to start a clinical trial of Rituximab. 

I am a Christian and live my life feeling the love of God. I am proud I didn’t lose the kindred spirit and have learned to enjoy life. I recommend everyone to practise gratitude for what we have: peace, solitude, friendship.

As a #GlobalVoiceForME, I would like to ask the world’s health authorities to take ME seriously and promote research. We deserve attention. 

#GlobalVoiceForME Mieko Shinohara

To answer the questions took Mieko one hour over several days.