Latest Activities

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

 

 

March 11 Meeting with Intractable Diseases Control Division

3.16 meetingOn March 11, JMEA met with the Ministry of Health’s Intractable Disease Control Division Section Chief Matsubara and assistant chiefs.

JMEA discussed the February 16, 2016 presentation at the U.S. CDC entitled “Post-infectious Chronic Fatigue Syndrome: Intramural Research at the National Institute of Health.” According Dr. Avindra Nath, the study’s Principal Investigator and chief of the National Institute of Neurological Disorders and Stroke (NINDS) section on infections of the nervous system, NIH’s study will focus on ME patients who had acute infectious onsets of ME. The presentation mentioned the recent Norwegian research on clinical trials of Rituximab as a treatment for ME.

JMEA appealed to the Ministry officials that Japan not fall behind other countries by advancing research on ME as a neurological disease in Japan, including allocating funds for clinical drug trials.

We learned at the meeting that while the United States apparently classifies both Ampligen and Rituximab as immune-modulating drugs, Rituximab is classified as a molecule-targeting drug in Japan.

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 Meets Parliamentary Vice-Minister Fusae Ota

Ota meeting1JMEA 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.

JMEA Meets with Chairman of the House of Representatives’ Health, Labour and Welfare Committee

JMEA board members met with House of Representatives member Hiromichi Watanabe, chairman of the House of Representatives’ Health, Labour and Welfare Committee on February 12, 2016. We informed Mr. Watanabe about the October 2015 NIH announcements concerning ME/CFS research in the United States, new research being conducted in Japan in cooperation with the Association, and clinical drug trials being conducted overseas. We asked the Committee to recognize the need for research on ME treatments, for the government to support more ME research, and for ME to be studied as a neurological disease in Japan.

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.

JMEA Meets with Secretary to Special Advisor Seichi Eto

On February 8, 2016, JMEA held an hour-long meeting with the Secretary to House of Councillors member Seichi Eto, special advisor to the Prime Minister and head of the Investigative Committee for Disabled Children.

We requested Mr. Eto’s support for government funding of research on ME as a neurological disease. We discussed NIH’s ME/CFS study under the direction of NINDS, mounting global opposition to the 2011 Lancet PACE study, ongoing clinical drug trials for the treatment of ME in other countries, and new research being started in Japan in cooperation with the Association. We further urged that the “Chronic Fatigue Syndrome” disease name to be changed in Japan, explaining that that name has perpetuated the erroneous view that the disease is merely an illness of chronic fatigue.

We informed Mr. Eto’s Secretary about our meetings with the Minister of Health and the president of Japan Medical Association with our requests for increased ME research.