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Trailer for “Hope to Our Hands: The Hidden Story of ME/CFS in Japan”

The Japan ME Association is currently at work on an English-subtitled version of our documentary film about ME/CFS patients in Japan, which we have been screening before a wide range of audiences across Japan since it was completed in 2017. It will be titled “Hope to Our Hands: The Hidden Story of ME/CFS in Japan.”

We would like to introduce the trailer for the film (an English translation of the Japanese captions to the four-minute trailer follows below). The English DVD will be based on an abridged version of the film that we are concurrently producing to raise ME awareness among medical professionals within Japan.

We would be very grateful for your kind help to share this trailer among the international ME/CFS community.

Trailer for “Hope to Our Hands: The Hidden Story of ME/CFS in Japan” (English translation)

Text enclosed in square brackets […] are captions (text on screen).

[Hope to Our Hands]
[The Hidden Story of ME/CFS in Japan]
[Trailer]

[One day, all of a sudden]
[Stricken by an illness without known cause or treatment]
[Becoming bedridden and forced to quit work or school]
[With most medical tests detecting no abnormalities]
[People with this illness are told despite suffering from severe symptoms]
[that it’s just their imaginations or that they’re lazy]

Woman: There are many doctors who have never even heard of the illness.

[An illness that doctors don’t know about]
[A lack of doctors to write medical certificates diagnosing the illness]

Woman lying in bed: When I met with those five patients, everyone was saying the same thing. Doctors don’t understand. Family members don’t understand. We’re struggling financially because we aren’t able to get disability benefits.

[Not recognized as having a disability]
[Unable to receive government support]

[Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS)]
[The illness has been called Chronic Fatigue Syndrome in Japan]
[Now it is common to use both names: ME/CFS]

Woman on sofa: People don’t take me seriously and say things like, “Oh, I have chronic fatigue too.” In the end, telling people the name causes even more misunderstanding about my condition.

[Suspected of being lazy and pretending to be ill]
[There are 100,000 patients who are living isolated from society]
[Patients who have been abandoned]

Woman in bed: When I realized that everyone was suffering the same way that I was, that they were all struggling, I realized that I had to do something.

[So she spoke up, created a patient association and a movie]

Title shot : “Hope to Our Hands: The Hidden Story of ME/CFS in Japan”

Woman in bed: I realized that Japan was really behind.
[Caption: Mieko Shinohara. Diagnosed in 1990 in the United States]

[I want people to know about this devastating disease]

[Despite being trapped in a body that would not work the way she wished]
[She reached out looking for other ME/CFS patients who would take action]
[From Hokkaido to Hiroshima]

Hope to Our Hands: The Hidden Story of ME/CFS in Japan

[Effective treatments for the illness are being pursued overseas]

Woman wearing glasses: I am hoping that they discover the cause and effective treatment for the illness soon.

[Completed this spring]
[Join our cause by hosting film screenings of this documentary across Japan]
[So that the Truth about ME/CFS ]
[and the voices of the patients can be heard]

Japan Me Association
Hope to Our Hands: The Hidden Story of ME/CFS in Japan
Seiji Arihara, Director

Contact us about hosting a film screening at 080-4082-6287
Japan ME Association

Concerns regarding the Japanese Ministry of Health’s Fact Sheet on ME

Japanese legislators rely on the Japanese Ministry of Health for accurate and current information on diseases. For this reason, our Association was deeply concerned when we discovered (on February 7, 2019) the fact sheet on ME/CFS that the Ministry of Health currently distributes to Japanese legislators who request information from the Ministry to learn about the disease. 

Presented in a one-page fact sheet, the information (translated below) contains careless inaccuracies which combine to depict ME/CFS as a mild condition with psychiatric components. It is careless and misleading in what it includes and what it excludes: ME/CFS is summarized as a list of symptoms that any healthy person might have: chronic malaise, fatigue, headaches, and cognitive dysfunction. The list notably includes depression, which is not a symptom of the disease, while it excludes the hallmark ME symptom of post-exertional malaise—the prolonged worsening of physical and cognitive function following physical or cognitive exertion. 

Further, the fact sheet prominently lists several psychiatric conditions as “co-morbid symptoms” in the second sentence of the short document. We are concerned that taken together with the mention of antidepressants and psychological therapy in the treatment section of the document, any individual relying on this fact sheet alone would conclude that ME/CFS is a mild condition with psychiatric components, misrepresenting both the medical literature about the nature and severity of the illness and reflecting a denial and disregard for the lived reality of ME patients. 

The fact sheet surprisingly makes no mention of the Health Ministry’s own 2014 ME/CFS Patient Survey, which found that approximately 30% of ME patients in Japan are severe patients who are bedridden or close and require assistance with activities of daily living and that moderate and severe ME/CFS patients are unable to work. 

The fact sheet also conveys the incorrect impression that the illness was first reported in 1988, omitting information about earlier reports which led to its classification in 1969 as a neurological disorder in the WHO International Classification of Diseases. 

The following is an English translation of the fact sheet in its entirety: 

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

(1) What is ME/CFS

(1)   Summary

A syndrome where patients are affected by severe generalized malaise of unknown cause followed by strong fatigue along with symptoms such as mild fever, headache, muscle pain, a feeling of exhaustion, cognitive dysfunction, and depression which continue over a long period. Comorbid symptoms include mood disorders, somatic symptom disorders, anxiety disorders, fibromyalgia, and irritable bowel syndrome.

Chronic fatigue syndrome is a syndrome that was reported by the United States Centers for Disease Control in 1988 (Chronic Fatigue Syndrome: CFS). In the United Kingdom it was also called myalgic encephalomyelitis (Myalgic Encephalomyelitis: ME) but in recent years it is being said that these might be the same syndrome.

(2)   Cause

The involvement of infectious disease, immune function abnormalities, autonomic nervous system abnormalities, and endocrine abnormalities have been suggested but the cause is unknown.

(3)   Diagnostic criteria / Treatment

At present no diagnostic criteria which uses objective markers has been created in any country. Vitamins, antidepressants, Chinese herbal medicine, and psychological therapy are being tried, but no effective treatment methods have been established.

 

Status of the 2017 Proposed ME/CFS Treatment Guidelines (Draft)

In late 2017, JMEA submitted its opposition to the publication of national ME/CFS treatment guidelines for Japan (Draft), which was scheduled to be published in spring 2018. The document was not published in spring 2018 but was set to be filed as a research report with the government health agency Japan Agency for Medical Research and Development (AMED). We are currently awaiting the release of this report and will provide a further update on the research report when it becomes publicly available.

The Association is deeply grateful to the international ME/CFS medical experts and advocacy organizations which kindly responded to our request to provide comments on the draft treatment guidelines document. We immediately shared your comments with the research committee which drafted the document and with the Ministry of Health.

In August 2018, we held a press conference at the Ministry of Health on the opinion letter we received from the International Association for CFS/ME (IACFS/ME) in response to our request for the association’s opinion on translated excerpts of the document. In the opinion letter, the IACFS/ME expressed concern that the document could be of potential harm to ME/CFS patients in Japan due to the recommendation of Graded Exercise Therapy (GET) as an effective treatment. The letter also shared our concern that the discussion in the document of behavioral interventions such as Cognitive Behavioral Therapy and yoga and of antidepressant drug therapy could give the mistaken impression that ME is a psychological illness which can be cured by such interventions. Questions from the press included why the opinions of the international and Japanese ME/CFS experts differed, among more specific questions about the document.

 

 

 

 

 

Japanese National Diet Adopts JMEA’s 2018 Petition for ME/CFS Research

We are pleased to announce that the Japanese National Diet has adopted Japan ME Association’s 2018 petition to the national government,  “Petition Seeking Research Advancement for the Neurological Disease ME/CFS,” as a result of voting on the petition by the House of Representatives and the House of Councillors, respectively. The adoption of our most recent petition follows the successful adoption of our formal petitions to the Japanese national legislature in 2014 and 2015, and again in 2016.

The petition was introduced to the 2018 Diet session by 99 Diet members across multiple political parties and submitted with more than 13,500 signatures. We are deeply grateful to all of the individuals (which included not only patients but those who first learned about ME/CFS through the petition effort) and Diet members who generously contributed to this significant result.

The petition will now be delivered to the Cabinet, and the Cabinet will produce approximately two reports annually to the House of Representatives on progress on the petition items.

ME/CFS has been classified in the World Health Organization’s International Classification of Diseases as a neurological disorder since 1969, and the disease has again been classified as a neurological disorder in the revised ICD-11 announced on June 18, 2018. This past April, AMED (the Japan Agency for Medical Research and Development) adopted the neurologist Dr. Takashi Yamamura’s research team for ME/CFS. ME/CFS was also featured in the scientific publication Nature this year, indicating that the disease is now recognized at a global level.

Japan ME Association greatly appreciates your continued support as we advocate for ME/CFS to be designated as Intractable/Rare Disease in Japan and for research advancements that will bring much-needed effective treatments to ME/CFS patients.

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