Accolades for our Documentary Film

Japan ME Association was honoured to receive words of recommendation for our documentary film, “Hope to these Hands: The Reality of ME/CFS,” from Japan Medical Association and World Medical Association President Dr. Yoshitaka Yokokura on December 17. We would like to share his kind words (translated from Japanese):

“Congratulations to Director Seiji Arihara and Japan ME Association for the completion of the film ‘Hope to these Hands: The Reality of ME/CFS.’ This work carefully encompasses not only the symptoms of this disease, but other dimensions of the reality of the illness surrounding the patients, such as the inability of patients to obtain Disability Certificates and the activities of the patient association, including from the voices of the patients themselves. It is a film that should be seen not only by medical professionals, but by the general public. There are indications of hope for patients in the recent efforts of researchers around the world to develop treatments. It is my hope that by having as many people as possible view the film, a deeper understanding of the illness and advances within Japan concerning the development of diagnostic criteria and the drafting of guidelines will result. The Japan Medical Association, in our capacity, would like to continue to assist in these efforts.”

On December 13, we also received the following generous words from the Japan Council on Disability (JD) president  Katsunori Fujii (translated from Japanese):

“One wonders why, while patients [at large] experience similar suffering to live, there are such differences in the way government administration treats them. Through images and the voices of patients, the film conveys the reality and practical difficulties of the patients’ situations from a perspective that is both human and objectively critical. We encourage as many people as possible to see this film, and to host voluntary screenings of the film.”

Finally, Japanese Society of Neurology President Dr. Ryosuke Takahashi (Professor, Kyoto University School of Medicine) appears in the film and has also expressed his recommendation of the film.

An Outstanding Preview Screening of our ME Documentary Film

Japan ME Association hosted its 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 and we were able to hold a highly successful premiere of the film. We extend our heartfelt gratitude to everyone who attended, as well as to those who worked tirelessly to raise funds to make production of the film possible.

With JMEA board member Dr. Isu Shin, MD 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, he had never imagined that he would one day be making a Japanese documentary about Japanese ME patients. He explained that it was a film that required acquiring a deep understanding of the disease, and expressed his apologies to the many patients who agreed to be filmed but who were not depicted in the final version of the documentary.

The film depicts the lives of patients who are severely affected by this neuroimmune disease, the activities of the patient association amidst a society that does not recognize or understand the illness, the consequences of patients’ inability to obtain Disability Certificates with an ME/CFS diagnosis, the personal and economic difficulties faced by patients, recent research developments in Japan and abroad, and finally the hope surrounding the recent research into effective treatments.

We received immediate feedback on the film after the screening. Comments included: “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,”  and “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 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 opined on the importance of research on inflammation in the brain and about the potential for major research advances in Japan; Japan should not merely depend on research to come out of the United States, especially with the high level of Japan’s immunological research, with its research institutions possessing the same technology as research universities like Stanford University. Dr. Yamamura emphasized the importance of detecting the disease early in patients going forward, and the possibility of using existing drugs to treat the disease. 

Finally, we held a press conference.  We answered questions including how we planned to use the documentary to spread awareness in Japan, whether the name “chronic fatigue syndrome” would change, and what steps were necessary to obtain the necessary funding to advance medical research.

An Outstanding ME/CFS International Academic Symposium

On October 23, 2016, the Association co-hosted an international academic symposium, “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Towards Effective Treatments for ME/CFS as a Neuro-Immune Disease” at the Tokyo University Tetsumon Memorial Lecture Hall, where we welcomed Dr. Anthony Komaroff and Dr. Nancy Klimas from the United States as special guest speakers.

The symposium aimed to raise accurate awareness among Japanese medical professionals and to stimulate interest in new neuro-immune research in Japan for ME, which is categorized by the WHO as a neurological disorder (ICD-10 G93.3). More than 150 people attended the symposium, including over 50 medical professionals and 13 pharmaceutical company representatives, as well as members of the press and public.

symposium1

takahashidrOpening 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.

komaroffInternational 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.

JMEA President Mieko Shinohara gave a talk entitled “Our Journey to the Symposium,” in which she recounted the almost total isolation of ME patients when she first returned to Japan in 1996 (after becoming ill in the United States). She then described JMEA’s efforts to bring about change for patients in Japan since establishing the Association in 2008.

klimasIn 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.

yamamuraDr. 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.

tendrDr. 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.

In his closing remarks, Dr. Yamamura stated: “ME/CFS will likely be examined as a disease at the intersection of neurology and immunology, and we are standing at the dawn of this research. We thank the patient association for organizing this symposium and it was remarkable that our prominent guest speakers from the United States gave such comprehensive lectures to the medical professionals here today.” A lively question and answer session among the symposium speakers and audience members followed. After the symposium, Drs. Komaroff, Takahashi, and Yamamura planned to co-write an article on neurological abnormalities in ME/CFS to be published in a Japanese neurology journal.

klimaskomaroffThe 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.

The symposium was made possible by The Nippon Foundation, as well as the support of the Ministry of Health, Labour and Welfare, the City of Tokyo, Japan Medical Association, Japan Society of Neurology, National Center for Neurology and Psychiatry, Japan Physicians Association, The Japanese Association for Gender-Specific Medicine, Hodanren, Tokyo Medical Practitioners Association,  Min-Iren, Japan Nursing Association, Japan Association of Medical Technologists, Japan Association of Social Workers in Health Services, Japan Council on Disability, and the Iryoseido kenkyukai. We would like to warmly thank the Tokyo University Graduate School of Medicine Neurological Science department and our dedicated volunteers for making the symposium such a success.

The symposium may be viewed here.

Nippon Foundation

 

 

Fundraising for Documentary Film on ME in Japan

Over the past two years, filmmaker and JMEA board member Seiji Arihara has been filming ME patients in Japan, depicting the daily reality of patients for a documentary film on ME in Japan, scheduled for completion in the spring of 2017.

We are currently raising funds to cover production costs for the film, and have created a short promotion video here. We ask for your help to circulate the video and encourage others to donate what they can so that we can make the best documentary possible.

The film will convey the difficult medical, financial, and social situation faced by ME patients and the complex problems surrounding ME, including the current “chasm in the (government) system” in which ME patients do not have access to public disability support and services under the current disability law. We would also like to portray the steadfast efforts of patient advocates and dedicated researchers and clinicians to improve the current situation despite these systemic problems.

Most of all, our goal is to raise accurate awareness about ME to improve the current state of medical care and to encourage new research for the disease.

ME remains virtually unknown in Japan, even with the Ministry of Health’s report from the 2014 ME/CFS patient survey revealing that 30% of patients are bedridden or close, most without access to reliable medical care. Patients and their loved ones continue to suffer from a lack of understanding about the severity of the illness from the medical profession, government health agencies, and society.

We kindly ask for your contribution to make the best film possible.

Donations can be made by bank transfer (within Japan) to the following accounts, created especially for the documentary film.

For donations from Japan Post Bank accounts:
– Japan Post Bank
Code: 10040 Number: 9222542

For donations from all other Japanese banks:
– Japan Post Bank
Branch Name: 008 Branch Number: 008
Regular Account: 9222542
Tokutei hieirikatsudohojin kintsusei nousekizuien no kai

 

JMEA President Authors Foreword in JD Journal

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.

Ministry of Health Publishes Patient Survey Report on Website

We reported earlier that the Ministry of Health distributed its final report (as well as a summary version) on its 2014 “Patient Survey Concerning the Activities of Daily Living Difficulty Levels of Chronic Fatigue Syndrome Patients” to regional Bureaus of Health and Welfare on September 30, 2015.

The reports had been sent as a liaison office communication from the Ministry’s Health Service Bureau Specific Diseases Control Division and the Social Welfare Bureau Disability Welfare Policy Planning Division to the regional bureaus. The communication from the Ministry stated: “[t]his report is being distributed to assist in administration matters such as responding to requests for advice from CFS patients and patients with similar symptoms and in making disability certification determinations. Please provide the information to the physicians designated to issue disability certifications within your jurisdictional district.”

The report and summary report have now been published on the “Intractable Disease, Rheumatoid Arthritis, Allergy, Kidney Disease, Chronic Pain-Related Information” page of the Ministry of Health, Labour and Welfare website under the following title: “Report on Patient Survey Concerning the Activities of Daily Living Difficulty Levels of Chronic Fatigue Syndrome Patients.”

Presentation of 2014 Patient Survey Results at the Diet

Japan ME Association and the St. Marianna University School of Medicine held a joint presentation and press conference on the results of the Ministry of Health, Labour and Welfare’s 2014 “Patient Survey Concerning Activities of Daily Living Difficulty Levels of Chronic Fatigue Syndrome Patients” at the House of Representatives Hall on April 22nd, 2015. Lead survey investigator Dr. Kazuo Yudo of St. Marianna University School of Medicine presented the survey results, with JMEA board member Dr. Isu Shin moderating the discussion.

The survey revealed that 30.2% of ME patients in Japan are severely ill patients who are either “bedridden with need for constant assistance” or “bedridden more than half of the day with need for frequent assistance.” This finding of the percentage of severely ill ME patients in Japan was consistent with the 25% percentage of severely ill ME patients cited by the International Association for CFS/ME (IACFS/ME).

So-called moderate ME patients comprised a further 35.1% of patients. These patients are mostly housebound, and are “able to conduct self-care but are unable to participate in regular social life or perform light labor,” or “are able to perform light labor on good days but require rest at home for more than 50% of the week.” Accordingly, the survey revealed for the first time in Japan that more than 65% of ME patients in Japan face a serious degree of impairment in conducting activities of daily living.

JMEA President Mieko Shinohara emphasized that the aspect of ME that patients cited as being the most difficult was physical suffering from disease symptoms. She appealed to the Diet members in attendance to adopt the Association’s petition in this year’s Diet session, following its adoption last year by the House of Councillors, but not by the House of Representatives.

Among the many notable comments raised in the ensuing discussion included: “There seem to be more patients who report not being able to work compared to other diseases,” “It is extremely difficult for patients to obtain Physical Disability Certificates,” “Any observations concerning the large number of young people and women among patients?” and “Does the uneven regional distribution of study patients reflect the lack of specialist physicians?” Questions from the media included: “How do the study results compare to studies from overseas?,” “Are there specific infections that trigger the disease?”

The survey team responded that the survey included patients who were unable to leave their homes for regular doctor visits; that there is no government or scientific organization in Japan that recognizes physicians as ME specialists; and that there is a need to re-examine the diagnostic criteria used in Japan.

More than 120 people attended the event, including 15 Diet members and 24 secretaries to Diet members across five parties. Officials from government agencies also attended, including from the Ministry of Health’s Specific Disease Control Division, the Department of Health and Welfare for Persons with Disabilities, and the Pension Bureau, as well as from the Ministry of Education’s Special Needs Education Division of the Elementary and Secondary Education Bureau.

The survey findings were covered in the 9pm NHK national news the same evening. Articles about the survey findings appeared in national newspapers such as Asahi and Mainichi news. Kyodo news, regional media outlets, and specialty publications also covered the event.