Japan ME Association hosted our first preview screening of “Hope to these Hands: The Reality of ME/CFS,” our original documentary film depicting the situation of severely ill ME/CFS patients in Japan which we began filming in 2014, at the TKP Shinagawa Conference Center in Shinagawa, Tokyo on October 22, 2017. Despite rain from a typhoon, many people turned out for the event for an outstanding premiere of the film. We are deeply grateful to everyone who attended, as well as to those who worked tirelessly to raise funds to make the film possible.
With JMEA board member Dr. Isu Shin, M.D., Ph.D., moderating, JMEA President Mieko Shinohara thanked Director Seiji Arihara for making the film and expressed that the objective of making and screening the film before audiences in Japan was to raise accurate awareness about ME and to advance research for the disease.
Mr. Arihara then gave a candid introduction to the film, revealing that when he and Ms. Shinohara first produced a Japanese-subtitled version of the American documentary film “I Remember Me,” many years ago with director Kim Snyder’s permission, he had never imagined that he would one day make a Japanese documentary about Japanese ME patients. He explained that making the film required acquiring a deep understanding of the day-to-day reality of the disease. He also expressed his gratitude to the many patients who agreed to be filmed but who did not appear in the final version of the documentary.
The film depicts patients who are severely ill with ME amidst a society that does not recognize the illness, the social and financial consequences of patients’ inability to obtain Disability Certificates, our patient association, and finally, the hope from recent research developments in the US and other countries to develop effective treatments.
We received immediate feedback on the film after the screening: “Thank you for making this film.” “The film captured patients’ thoughts and troubles concisely.” “It was encouraging to learn about all the research being done in the United States.” “I was happy that the film makes clear that ‘stress’ is not the cause of the illness.” “I felt encouraged to overcome the difficulties that I experience.” “The film achieved a balance between subjective patient experiences and objective information.” “I want the severely ill patients who couldn’t make it to the screening to see the film as soon as possible.”
After a short break, former JMEA Vice President Dr. Miwako Hosoda spoke about the remarkable journey of Japan ME Association’s efforts in engaging medical researchers, government policymakers, social scientists, other non-profit associations, and the media to improve the situation of patients’ lives.
Finally, Dr. Takashi Yamamura, Director of Immunology at the National Center of Neurology and Psychiatry (NCNP) gave a presentation entitled “Directions in ME/CFS Research.” Dr. Yamamura, a leading specialist in multiple sclerosis (MS) who is now also engaged in ME/CFS research, gave the example of developments in MS, where after 25 years of having no effective treatments, there are now around five drug treatments for the disease, with many patients able to work; when one drug emerges, the landscape can change dramatically within 10 years. Neurological diseases often are not detected by standard medical tests, as is the case with ME/CFS. He emphasized the importance of research on inflammation in the brain and central nervous system and about the potential for major research advances in Japan; Japan should not merely depend on research from the US and Europe, especially with the high quality of Japan’s immunological research, with research institutions equipped with advanced technology on par with research universities abroad. He also discussed the importance of detecting the disease early in patients going forward, and the possibility of using existing drugs to treat the disease. 
Finally, we answered questions from the press, including how we planned to make use of the documentary to spread awareness in Japan, whether the name “chronic fatigue syndrome” would change, and what steps were necessary to obtain adequate funding to advance medical research.
Known mostly as “chronic fatigue syndrome” in Japan, ME/CFS has been called “myalgic encephalomyelitis” for 60 years, and is widely recognised as a neurological and immune disease internationally. While a recent Ministry of Health survey revealed that approximately 30% are severely ill patients who are close to bedridden, the situation of patients in Japan has remained hidden from society as they are rarely able to leave their homes. While it is still rare in Japan to find a doctor who can diagnose the disease, medical scientists around the world are now competing and collaborating with each other to advance research and to identify effective treatments.
Japan ME Association president Mieko Shinohara gave brief remarks. She recounted that “I had an onset of ME while studying abroad in the United States in 1990, by 1992 I already knew that I had brain abnormalities by MRI, an immune modulating drug called Ampligen was being tested since 1988. The disease has been treated as the neuro immune disease in Western countries. The NIH study used the Canadian Consensus Criteria as the basis for its research, a document that points to the WHO’s classification of the disease as a neurological disorder, as with the clinical guidelines issued by the IACFS/ME in 2012. It is common knowledge in the West that the disease is a neuro (immune) disease.”
On November 15th, the ruling Liberal Democratic Party’s (LDP) of the Japanese National Diet held a general meeting of its new caucus on behalf of ME/CFS patients at the House of Representatives. The caucus seeks to realize the designation of ME/CFS as an Intractable Disease and to promote research to elucidate the cause and pathology and to develop effective treatments; it was formed as the result of meetings between Japan ME Association and LDP members.
The head of the Ministry of Health’s Department of Disease Control briefed the group on current measures for intractable diseases and the results of the 2014 ME/CFS national patient survey, and expressed the Ministry’s intent to continue to support further research efforts.
It is critical that we understand this not as a fatigue disease, especially in light of the disease concept being conflated with the emphasis on the fatigue symptom. We need funding to research targeted immune therapies. Moreover, to do this, we must involve specialists who understand brain inflammation (neuroimmunology specialists). The optic neuromyelitis research had demonstrated succcess at just 4 years. So we must not think that just because a disease is an intractable disease that it will take a 10 or 20 year span [to resolve it]. If a good drug treatment has the potential to improve patients in 3 years, we should not be delaying it to take 10 or 20 years.”
Opening remarks were given by Dr. Ryosuke Takahashi, Professor of Neurology at Kyoto University Graduate School of Medicine. He stated that as President and representative director of the Japan Society for Neurology, “I have come to recognize our need to turn our attention to this disease,” and expressed his hope that the symposium would aid those in attendance to become knowledgeable and to eventually advance research for treatments for ME/CFS.
International ME/CFS expert and thought leader Dr. Anthony Komaroff (Professor of Medicine, Harvard University) delivered the symposium’s keynote speech entitled “The Biology of ME/CFS.” Dr. Komaroff emphasized that, as a 2015 United States Institute of Medicine report concluded after a review of over 9,000 medical studies, ME/CFS is a biologically-based illness with abnormalities affecting multiple systems. Dr. Komaroff’s presentation encompassed the definition of ME/CFS, epidemiology studies, neuropsychological studies demonstrating cognitive dysfunction, abnormalities found in brain studies including on MRI, SPECT, PET, EEG, and spinal fluid studies, post-exertion muscle abnormalities, immune abnormalities, the possible role of infections in triggering the illness, energy metabolism abnormalities, evidence of oxidative and nitrosative stress, and the possible role of the gut microbiome which may be triggering some cases of the illness.
In a presentation entitled “Modeling ME/CFS to Develop Targeted Therapy,” past IACFS/ME President Dr. Nancy Klimas (Director for the Institute for Neuro Immune Medicine, Nova Southeastern University) discussed the work of the interdisciplinary team at her institute to develop a virtual model of ME/CFS, integrating genomic, immune, endocrine, neuropeptide and clinical data in a dynamic modeling study. Dr. Klimas described progress on one study in which blood was drawn from research subjects at rest, during exercise to the anaerobic threshold, and 7 additional time points over 24 hours, with the computational biology team using the data to examine the sequence of events leading to relapse (post-exertion exhaustion), then “projecting back” to therapeutic targets that would prevent relapse. The modeling work is also used to look for strategies to reset homeostatic networks and for curative therapies. Dr. Klimas reviewed the study’s progress to date, including plans for eventual clinical trials. Dr. Klimas, an immunologist, emphasized that ME/CFS is a neuro-immune disease.
Dr. Takashi Yamamura (Director, Department of Immunology, Japan National Institute of Neuroscience, NCNP) presented “Towards Immunotherapy for ME/CFS: Flow Cytometer Analysis.” Dr. Yamamura noted that among immune abnormalities reported in ME/CFS, the therapeutic effect of B cell depletion by the drug rituxmab had been reported in studies from Norway in 2011 and 2015. He discussed the use of flow cytometer analysis in a study by his institute to examine the possible role of B cells in ME/CFS pathophysiology. The frequency of transitional B cells among total B cells was significantly decreased and that of CD80+ plasmablasts were increased in ME/CFS patients compared to healthy controls. This might suggest a subset of ME patients with a functional dysregulation of B cells, a possible therapeutic target.
Dr. Chuwa Tei (Professor, Dokkyo Medical University) discussed the effectiveness of Waon therapy to relieve symptoms of ME/CFS. Dr. Tei developed Waon (“soothe warm”) therapy as a thermal therapy for chronic heart failure. He described clinical cases of ME/CFS where symptom relief was observed as the result of the therapy, which is characterized by improvement of vascular endothelial function, improved blood flow (including cerebral blood flow) through systemic blood vessel dilation, improved central and peripheral autonomic function, and promotion of antioxidant effects.
The symposium was a landmark event which brought together veteran ME/CFS scientists and leading Japanese neurologists to discuss ME as a neuro-immune disease, one which gave us hope for new research in Japan, including clinical trials to study potentially effective drug treatments.
On March 11, JMEA met with the Ministry of Health’s Intractable Disease Control Division Section Chief Matsubara and assistant chiefs.
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.
Japan ME Association 