Latest Activities

JMEA signs Letter to WHO Director-General Dr. Tedros Adhanom Ghebreyesus

As part of our collaborative actions with international ME advocacy organizations along with our participation in the global day for health equality for ME/CFS #MillionsMissing, Japan ME Association has co-signed an open letter to the WHO Director-General Dr. Tedros Adhanom Ghebreyesus from the International Alliance for ME requesting a meeting to highlight the serious and significant impact of ME and to “explain why we are seeking urgent national and international action to increase research on [ME] and ease the suffering of patients around the world.”

We support this letter along with ME advocacy organizations from the UK, the United States, Australia, South Africa, Spain, and other countries in our sincere hope that the Director-General will accept the International Alliance’s invitation to speak with him to address the urgent situation facing ME patients worldwide at the WHO level. The full text of the letter can be found here.

JMEA to participate in #MillionsMissing at Geneva Event

On Saturday, May 12, 2018, Japan ME Association will participate in the global #MillionsMissing protest as part of the International Alliance for ME’s Visibility Event at Place Des Nations in Geneva, Switzerland, the location of the World Health Organization (WHO).

#MillionsMissing is a global day of public action that calls for health equality for patients with ME. This year, Japan ME Association joins for the first time through its participation in the event in Geneva, where messages from Japanese ME patients will be displayed among those from many other countries. The International Alliance for ME is a joint international advocacy movement which aims to raise the profile and awareness of ME at the WHO level. The goal of the Alliance is to collaborate with organizations and individuals at the national and international levels to advocate for the adoption of a resolution by the WHO and its Member States recognizing ME as a “serious, chronic, complex and multisystem disease that frequently and dramatically limits the activities of affected patients (Institute of Medicine, 2015)” and to adopt measures to provide a global and coordinated public health response to ME.

JMEA believes that it is critically important to combine our efforts with ME advocacy organizations internationally to more effectively convey to the Japanese government the urgent need to improve the current public health response to ME. We firmly believe that advances at the WHO level and in other countries will positively influence the situation of ME patients in Japan and vice versa.  

Public Comments on the Proposed Treatment Guidelines

In December 2017, in addition to requesting an external review from Japan ME Association among other groups on its “ME/CFS Treatment Guidelines for Japan,” the Research Committee on the Development of Treatments and Treatment Guidelines for ME/CFS also solicited comments from the public.

Several organizations and individuals within Japan have shared with us the public comments they submitted to the guidelines research committee. We highlight three of them (translated from the original Japanese) here.

  • “According to a 2012 to a survey conducted with the ME/CFS association, 47% of patients visited more than six medical institutions before they obtained a diagnosis. Patients struggled from misunderstanding and prejudice even after receiving an ME/CFS diagnosis, with a lack of understanding from family and friends. They are often viewed as being malingerers. The proposed guidelines include many problems as the patient association has indicated, and will result in further deepening misunderstanding about the disease among medical professionals who do are not familiar with ME/CFS. I hope these guidelines can be reconsidered using reliable factors such as diagnostic criteria and clinical treatment information.” – Dr. Miwako Hosoda, Vice President, Seisa University 
  • “What patients seek regardless of where they live is discovery of the pathology of ME/CFS and the development of effective treatments. It is unacceptable to have situations that may result in harm to patients even outside the context of clinical treatment. This is because the suffering that accompanies illness onset, diagnosis, and visiting doctors in search of treatment is endured by patients and their families, and more precisely, by patients. Of course, risks accompanying research such as clinical treatment trials may be unavoidable. But such risks must be minimized as much as possible, not just limited to clinical trial research… At the very least, I am uncomfortable with the release of the current proposed guidelines, which have been created without convening a panel consisting of stakeholders such as patients, members of the public, and specialist researchers.” – Natsuko NojimaResearcher, Japan Society for the Promotion of Science
  • “In treating illnesses like ME/CFS where the pathology is not yet known, it is only with the passage of time when the actual situation becomes known that medical treatment and medical policies may be truly evaluated. For example, there could be a treatment that may be applied with the best of intentions, but which could constitute a human rights issue. There is a need to be cautious. If there is no treatment with an A-grade recommendation, I believe the guidelines should make clear that there are currently no effective treatments. Since there is no such statement, many clinicians may overlook this important fact and may select graded exercise therapy, which is recommended as a B-grade treatment but has the potential to make patients worse. It could spread the promotion of exercise for illnesses with fatigue even if they make patients worse, as these incidences often remain unreported and patients may end up paying for treatment only to find themselves suffering more.” – Keiji Nakazawa, President, Non-Profit Organization Healthcare Innovation in Japan

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.

Our Opposition to Proposed National Treatment Guidelines for ME/CFS

Japan ME Association held a press conference at the Ministry of Health, Labour and Welfare’s press club on December 14, 2017 to announce our opposition to the public draft of proposed “Treatment Guidelines for ME/CFS for Japan,” issued by the Research Committee for the Development of Treatments and Treatment Guidelines for ME/CFS for public comment. The  proposed clinical treatment guidelines for ME/CFS are scheduled to be published in spring 2018 in Nihon Iji Shimpou, one of the most widely read medical journals in Japan.  JMEA received a request to submit an external review in November 2017, and we announced our opposition to the proposed guidelines at the press conference. NHK, The Asahi Shimbun, The Sankei Shimbun, Kyodo News, and several regional media outlets attended.

JMEA believes that the proposed treatment guidelines do not provide an adequate, reliable, or safe basis for clinicians in Japan to make treatment decisions for ME/CFS patients in real-life clinical settings. The research committee evaluated various treatments to create the proposed treatment guidelines solely on the basis of a literature review (using an “Evidence-Based Medicine” analysis), with each treatment given an effectiveness grade of an ‘A’ to ‘I’ grade-rating (with an A-grade being the most effective).

The result is a document that merely discusses the results of the committee’s literature review, with no A-grade treatments and with a single B-grade treatment recommendation for Graded Exercise Therapy (GET) (all other treatments mentioned in the guideline document — CBT, antidepressants and other drug treatments, Chinese herbal medicines, and yoga — were rated C-grade or lower), with no discussion or guidance on how to distinguish among the appropriateness of the various treatments for actual ME/CFS patients, each with varying symptoms and severity of illness.

Further, the proposed treatment guidelines pose a risk to worsening the symptoms and overall health of ME/CFS patients in recommending Graded Exercise Therapy (GET) as the single treatment with the highest B-grade rating. In particular, gradually increasing aerobic exercise until the patient can return to their normal lives is recommended. (The guidelines recommend GET under the guidance of an appropriate instructor. However, as the document acknowledges apart from its recommendation, primary care doctors, rehabilitation specialists, and physical therapists in Japan do not have knowledge or training about ME/CFS or its symptoms.)

We believe that there is a serious problem where GET is set be established in the national treatment guidelines for Japan as the most highly-rated treatment where GET has been under harsh scrutiny and is being re-evaluated or rejected in the rest of the world. The document acknowledges in footnotes, for example, that the United States Centers for Disease Control (CDC) recently removed GET from its ME/CFS website. Nevertheless, GET is still presented in the proposed guidelines as a highly effective ME/CFS treatment based on the result of the committee’s “evidence-based medicine” literature analysis of research studies mostly from the United States and Europe. The guidelines cite to old studies where the diagnostic criteria used to screen patients are opaque, as well as to studies published in psychology journals and to the highly criticized PACE trial in its list of references in support of its treatment recommendations.

Recent research studies have shown that increasing exercise after a certain (low) threshold leads to a worsening of symptoms, with more medical institutions finally acknowledging this reality in the West. Japan and Japanese ME/CFS patients should not remain in the dark ages on this critical development.

In addition to posing a risk of worsening symptoms – especially where there is a complete lack of knowledge among Japanese physicians, physical therapists, and exercise specialists about ME/CFS and its symptoms, including the post-exertion exacerbation of symptoms – the recommendation of GET in the treatment guidelines will inevitably (and unnecessarily) deepen prevalent and mistaken beliefs about ME/CFS that are currently held among the vast majority of Japanese medical professionals (for example, that ME/CFS is a psychological illness that can be improved by gradually increasing exercise).

JMEA opposes the proposed treatment guidelines for the simple reason that they pose a serious risk to ME/CFS patients. With only a very small handful of doctors in Japan who have experience diagnosing and treating ME/CFS, the individuals who stand to suffer most from this document are ME/CFS patients in Japan of all severities of illness, including and especially severely ill patients.

We outlined the following seven reasons for our opposition to the proposed ME/CFS treatment guidelines in our written external review submitted to the research committee:

1. With no A-grade treatment recommendation and one single B-grade recommendation, the proposed ME/CFS treatment guidelines do not provide an adequate and reliable basis for physicians to determine safe and appropriate treatments for ME/CFS patients of varying illness severity in real-life clinical settings.

2. We are seriously concerned that the mostly highly recommended treatment in the proposed treatment guidelines for Japan will be for Graded Exercise Therapy (GET), a treatment being rejected around the world, and which poses a risk of worsening, and not improving, patients’ symptoms.

3. We question whether the research committee took into account the diagnostic criteria employed in the research studies that were evaluated for the “evidence-based medicine” literature review analysis on which the development of the proposed guidelines was based.

4. We question the paper’s analysis regarding the effectiveness of antidepressants to treat ME/CFS. If the selected literature included studies where there were a mix of ME/CFS patients and patients with major depression (which can easily result from the use of old diagnostic criteria such as the Oxford criteria), there is a question about the effectiveness of antidepressants to treat ME/CFS, distinguished from its effectiveness for treating depression, including secondary depression symptoms that some ME/CFS patients experience as a result of the social, financial, and personal consequences of living with a serious disabling physical illness. Because this distinction is not explained in the document, the proposed treatment guidelines gives a misleading impression about the effectiveness of antidepressants to treat ME/CFS itself.

5. In its explanation of ME/CFS, the draft treatment guidelines omit the fact that the ME is classified as a neurological disorder in the World Health Organization’s International Classification of Diseases.

6. In its explanation of ME/CFS, the proposed treatment guidelines state that the estimated the number of ME/CFS patients in Japan is 300,000, while the most recent (2012) AMED research committee concluded that the number is 0.1% of the population (a number closer to 100,000).

7. The proposed treatment guidelines were created solely using a literature review, without considering clinical information or data.

Patients already suffer from being told that the illness is “all in their heads,” that they can be cured with a change in thinking, antidepressants, or exercise, with even close family members and friends not grasping the seriousness of the illness. Patients often do not look sick and are often viewed as being malingerers. As a patient association, we cannot permit a foreseeable situation to come about that harms patients by perpetuating and exacerbating the existing problems about how the illness is viewed, understood, and treated by medical professionals in Japan.

Questions from the press included: “Did the Ministry of Health commission the drafting of these guidelines?” “Why do you believe guidelines were drafted which would be opposed by patient groups?” “If the treatment guidelines are published, will they actually be implemented?” “What kind of treatments are patients currently receiving?” and “What position is the Japanese Neurology Society taking?”

We welcome your comments in English or Japanese on the serious issues raised by the proposed national treatment guidelines for ME/CFS. Please send them to the following email address for Japan ME Association: cfsnon@gmail.com

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.

First Preview Screening of our ME Documentary Film on October 22

We are very pleased to announce the first preview screening of our documentary film “Hope to these Hands: The Reality of ME/CFS,” produced and directed by filmmaker Seiji Arihara, at the TKP Shinagawa Conference Center Banquet Hall in Tokyo on October 22 at 1:30 p.m. (details below). “Hope in These Hands,” filmed between 2014 and 2017, is the first ME/CFS documentary to be produced by a patient association in Japan. We hope the film will be widely viewed both by medical professionals and the public.

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.

After the screening, Dr. Takashi Yamamura (Director of Immunology at the National Center for Neurology and Psychiatry),  a leading researcher and clinician on neurological and immune diseases who has started research on ME/CFS over the last two years, will give a talk about the current state of international ME/CFS research. Seisa University Vice President and former JMEA board member Dr. Miwako Hosoda will speak about patient advocacy, including about the activities of our Association.

Venue and Registration

Date: October 22 (Sunday) 13:30 – 16:30

Venue: TKP Shinagawa Conference Center, Banquet Hall 6G (one-minute walk from the JR Shinagawa Station Takanawa Exit)

The event is free of charge and open to all members of the public (seats: 80 persons; please register in advance by email to Japan ME Association (answertomecfs@gmail.com) with your name, affiliation, and phone or email contact information).

Event Program

Part 1: Film Screening, “Hope in these Hands: the Truth about ME/CFS” (60 minutes; Seiji Arihara, Director)

Remarks: Mieko Shinohara (President, Japan ME Association): The documentary film “Hope to These Hands: The Reality of ME/CFS”

Part 2: Discussion and Exchange (Q&A session)

Dr. Takashi Yamamura (Director of Immunology, NCNP)

Dr. Miwako Hosoda (Vice President, Seisa University; former board member of Japan ME Association)