Japan Me Association: "Accolades for our Documentary Film"

Andy

Andy

Retired committee member
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.”
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https://mecfsjapan.com/2017/12/19/accolades-for-our-documentary-film/
 
Thanks @Andy, that's so interesting! I had a look at the website of the Japan ME Association and it's crazy how identical our situation is worldwide. One of their recent posts is on the opposition to the national treatment guidelines for ME/CFS - sounds familiar!
Bildschirmfoto 2018-01-21 um 19.17.32.png
ETA: That's their blogpost in English about the treatment guidelines that include GET: https://mecfsjapan.com/2017/12/15/410/
The Japan ME Association sounds great!

Unrest is also being translated into Japanese and the Japanese subtitles are coming to Amazon and Vimeo soon.

Edited (typos+clarity)
 
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Allele said:
How can we watch the Japanese film? Does anyone know?
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I can't find any more details other than this on their homepage
We are proud to announce the completion of our own documentary film on ME patients in Japan, “Hope to These Hands: The Reality of ME/CFS” (currently only in Japanese, though we hope to make an English-subtitled version), which we began screening in October 2017. Our public awareness events in the past have featured public screenings of Japanese-subtitle versions of the ME documentaries “Voices from the Shadows” and “I Remember Me,” in addition to contributing articles in medical journals and holding press conferences about our activities.
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My wild guess is that this is the trailer. (Google Translate helped me figure it out.) Even though we don't understand what they're saying, I think we probably know what they're saying. It's all too similar.

Btw, I love those reclining wheelchairs!

 
“Hope to these Hands: The Reality of ME/CFS” It’s feels like an Unrest(ed) Deja Vu...

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.”
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For more reads... click in the link:


https://mecfsjapan.com/2017/10/27/an-outstanding-preview-screening-of-our-me-documentary-film/
 
Documentary movie "Hope in this hand"

A documentary film produced by NPO corporation "Association of Myalgic Encephalomyelitis"

Hope for this hand ~ the truth of ME / CFS ~

Muscle pain encephalomyelitis / chronic fatigue syndrome (ME / CFS)
Cause and treatment unknown disease Japan's first documentary film made by ME / CFS patient association

Director / composition: Seiji Arihara Narrator: Yanagisawa Mitsuyo

Diseases suspected of being just fatigue, or suspected of being fraudulent, which have been called chronic fatigue syndrome (CFS) in Japan are called myalgic encephalomyelitis (ME) in the world, and now researchers from around the world treat I am shielding the development of medicine.

DVD to be completed in New Spring Screening screening throughout the country! Consultation of the screening until the corporation
Contact address: 3-11-12 Takadanai, Nerima-ku, Tokyo 177-0033 Tokyo, Takei Building 2B
Phone: 03-6915-9281 FAX: 03-6915-9282 Email: cfsnon@gmail.com

【story】
ME / CFS usually develops after a virus infection and is a neurological disease with immune disorder, neurological dysfunction, cognitive dysfunction, sleep disorder, autonomic dysfunction. Patients can not even send ordinary daily life, they are no longer going to school or work, many patients are bedridden, isolated from society. However, because there are very few physicians who can do medical examination, abnormalities can not be found in ordinary examination, so it is said that "If you change your mindset, you will be cured", "Personality problem" and so on, I can not get your understanding from my family and friends, We are looking at whether there is something to be done. Despite the fact that it is estimated that there are about 100,000 patients in Japan, it is impossible for most seriously ill patients to come out of the house, so the actual condition has been buried in darkness.

Without one doctor who understands, one serious patient close to bedridden who developed ME / CFS during study in the USA in 1990 translated a documentary film of the United States depicting the actual state of the patient and started the preview Did. Together with a few understanding people established a patient association in 2010 to translate European and American diagnostic criteria and latest medical information etc, continue appealing for neurophysiologist ME / CFS research promotion of neurological diseases, and finally in 2015 My wish has come true. ME / CFS has not yet clarified the cause and has not established a cure, but in recent years the research has progressed dramatically overseas, the world's first cure is approved, the world Patients in medicine are drinking and waiting.

I will recommend it.

★ Actress Keiko Takeshita

"I never knew about ME / CFS until I saw this movie, even though there are about 100,000 patients nationwide. When my family is, though it may be myself, it's totally myself , I think there are still a lot of ignorant people like me because one of the reasons is that there are few specialists and understanding of diseases is not progressing even among medical personnel.If former Professor Shigeaki Hinohara said " I heard that medical treatment in Japan is 30 years less than in the United States. " Makiko Shinohara, my head really goes down to the patient who lives in a single mind facing this disease. The difficulties of patients and their families are fundamental human rights issues. I hope that as many people as possible get the correct knowledge and a way to solve it. "

★ Professor Yoshitake Yokokura, Chairman of Nippon Medical Association, a public interest corporation

"Director Mr. Seiji Aruhara, NPO corporation Muscle painful encephalomyelitis meeting, congratulations Congratulations on completion of the movie" Hope in this hand - the truth of ME / CFS ~ ".
In this movie, not only the symptoms of this disease but also the establishment of the patient association and its activities, the difficulty of obtaining a handicapped person's notebook, etc. The current situation surrounding patients is polite based on the voice of the patient It is painted in not only medical professionals but also the general public as a work you would like to see.
Researchers around the world are working diligently to develop therapeutic drugs, and patients are beginning to see a clear sign. By watching this movie by as many people as possible, understanding of diseases will deepen and I hope that in Japan we will develop guidelines and develop diagnostic methods. Even as a Japan Medical Association, I am fine, but I would like to continue as much cooperation as possible. "

★ Japan Neuroscience Society Representative Director · Professor, Kyoto University Medical School Professor Ryosuke Takahashi (Appears in a documentary film)

★ Certified NPO Japan Disability Council Representative Mr. Katsunori Fujii

"Why is there a disparity in administrative response while holding the same living thing, through the video and the voice of the parties, the realities and the essence of the problem are transmitted to the real, but severely, as many people If possible, I will call for the holding of a voluntary screening "

★ Former Chiba Governor Domoto Akiko

"Muscle pain encephalomyelitis / chronic fatigue syndrome (ME / CFS) is an intractable disease that loses strength fatigue, pain, memory and memorability that can not be recovered by sleep, and is deprived of body freedom Ms. Shinohara Megako Since then, I have been working dedicatedly to open up the path of diagnosis and treatment for the same sick, especially since I have been working on Japanese administrations and medical associations that are lagging behind This document was created by setting up a patient association and fighting his own illness while fighting his own illness.This work "Hope in this hand" is made for the same sick person, families and medical association people I am convinced that it will deepen understanding, learning and courage to this intractable disease. "

★ Tokyo Insurance Medical Association Board Director Suehiro (Corporate Director)
"I can not get up from bed, my head does not work, even in a hospital I do not understand the cause, nobody understands, no treatment will gradually get worse ... In hopeless circumstances, ME patients I wanted to change this situation, I made a small circle, the ring that appealed to my family and medical staff grew little by little, but it is still a small circle.After 8 years I gained the power of many people I made this movie to spread this small circle throughout Japan.
As a medical doctor who knew about this circle by chance, I joined this circle with a small momentum and spun the wheels together, but the other wheel (medical care) which is both wheels with the patient is not enough. I think that many medical persons would like to join this circle. "

【Production staff】
Music: Hasegawa Chinatsu Shoot: Sato Tsutomu, Takabe Yuko, Arahara Seiji Voice Recording: Water Orion, Mitsuru Fukushima, Hidekazu Hotta Translations: Mieko Shinohara, Masayuki Shinohara, Mitsuzo Shigehara, Mitsuko Tsunahara, Production:

【Production support grant cooperation】
Japan Physical Therapy Association, Palsystem Tokyo Citizen Activities Fund, Caritas Japan

【Cooperation】
Tokyo Insurance Medical Association, Tochigi Corp

◎ We are planning screenings at various locations. Please see "Future Events" for details.

◎ Please cooperate with fund-raising for video production funds. You can see the production support call video from here . I appreciate your cooperation.

【Dedicated payee for donation of video production fund】
When transferring from Yucho Bank Yucho Bank sign 10040 number 92225421

○ When transferring from another financial institution Yucho Bank store name OOO (zero zerohachi)
Store number 008 ordinary deposit 9222542
Specified nonprofit corporation Muscle pain encephalomyelitis

* The state of the first preview of October 2016 can be seen from here .
※ The first preliminary screening questionnaire can be seen from here .
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Original (Japanese): ME/CFSのドキュメンタリー「この手に希望を」
Google Translate (English): ME / CFS documentary "Hope in this hand"
 
Japan has some ready psych 'blame the victim' culture as well. When commenting on the public fears and risks of fallout from Fukushima, a chief medical official said they only people who will get ill from it are those of 'weak spirit.'

In other words, it's all in your head. Getting sick is your fault. Your attitude and thoughts are why you'd become sick - from radiation and fall out radionuclides.

The other part of Japanese culture is a bias against any disability or infirmity. It is not 'polite' to distress people by being in public if you have a visible disability. Public transport has special seats reserved for the elderly and the disabled, but there is a stigma about the seats so you never see anyone use them, no matter how full it is.

While Japan is more conformist to social norms, I think this is true everywhere, the bias against disability and the chronically ill. It makes people uncomfortable and if you assert your rights you are guilty of making those around you so.

Even people whose job is working with the ill or disabled can be susceptible to making judgements, especially 'invisible illnesses.' ME patients often suffer OI/POTS issues with limited 'upright time,' often easily exceeding limits by standing. They transport laying flat in cars, they use wheelchairs or scooters.

A well known ME advocate / blogger received ire from a porter when she stood briefly around the car while sorting the luggage, the porter seeing this as a sign of faking a disability to use the airport services for the disabled. Anyone with a disabled parking tag who isn't in a wheelchair can get comments or looks from those in the parking lot accusing them of the same thing.

The public campaigns on disability rights are still lacking, but we should at least expect medical professionals to do better in getting it right. But as long as there are incentives to discount the needs of the ill or disabled for political or financial reasons, there will be people in power willing to blame the victims.
 
Stuart said:
When commenting on the public fears and risks of fallout from Fukushima, a chief medical official said they only people who will get ill from it are those of 'weak spirit.'
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Wow. I thought Wessely help some kind of record for suggesting victims of the Camelford water poisoning episode were suffering from mass hysteria, but I've got to admit that one takes the prize — "Only wimps get radiation sickness."
 
@Stuart, that's so interesting, do you live in Japan? Would like to learn more. I imagine it's especially tough be sick in Japan. I have an uncle who lives in Tokyo and I was always amazed at his stories about the work ethics and peer pressure at work and that a lot of working people don't even dare to take any or the full amount of vacation days etc. I guess it must be much more difficult to "do nothing" because you're sick in Japan. Don't know if it's related but saw that all of the Japanese ME Youtube videos I've clicked at in the past had many down votes.
 
@Joh Ryugakusei deshita. I was a foreign exchange student to Japan.

Karoshi is the 'death by overwork.' I suppose it doesn't help staying all evening at work whether you have something to do or not, then going out drinking with coworkers until midnight or whenever the last trains home are.

Interestingly this was in the early 1980s. I am trying to recall the exact timeline, but when I was in a NIH study there was an interest in doing a family study of the patients, this never happened but I did relate my history which sort of puts me right in the thick of things.

My great grandfather was Santa Clara County Assessor when he died at a local hospitals infectious disease ward in 1934. My grandfather would follow him in that position and was working there at the time, he would also become ill with what at the time was labeled 'atypical polio.'

This at the time of five counties in California having an outbreak of 'atypical polio.' Polio had been of great concern in the last few years in California having hit Los Angeles hard. Thus both Dr. Brody went to Los Angeles as one of many sites to trial his polio vaccine. Nurses and doctors were not the only early adopters of the trial vaccine.

This vaccine would be used in the staff of the Los Angeles County General Hospital who became ill and leaves us a record due to the investigation there of US Public Health official Gilliam's report. There was also a $6M settlement with the staff in a sealed class action suit settled in 1936.

At the same time Los Angeles greeted with great fanfare a group of researchers from Yale Medical and the Rockefeller Foundation to try to isolate the poliomyelitis virus and do inoculation experiments on monkeys. The LACGH was the largest hospital in the world at the time so perhaps a natural location for the research and experiments.

By the 1970s my grandfather had his illness symptoms labeled 'post polio syndrome.' He would also in the late 70s having retired relocate and build a home five blocks from the lake in Incline Village Lake Tahoe Nevada. He would seek medical care from the local Internists not far away, the clinic of Peterson and Cheney.

My father and I would visit several times, once becoming quite ill and upon returning home be ill for months, my mother would become ill after being our caregiver. I went to Japan as a college exchange student in the early 80s.

So both by family history back to the 1934 first outbreak of ME, to the Tahoe outbreak and my personal illness history, to Japan where they had their outbreak of ME. If you make a Venn diagram of ME, I seem to sit in a few of the key circles!
 
This is dated June 10, 2020 so I assume it's recent. The documentary was released in 2018 and it looks like a new release with subtitles. I'm not sure about charging for it, though, it drops viewership precipitously.

Would be nice to connect with them but ESL is pretty rare in Japan so I don't know if we could communicate well.


International Release of Documentary on ME in Japan (VIMEO)

https://mecfsjapan.com/2020/06/10/international-release-of-documentary-film-on-me-in-japan/
Japan ME Association is pleased to announce the international release of “Hope to Our Hands: The Hidden Story of ME/CFS in Japan,” an English-subtitled version of our documentary film on ME patients in Japan. It may be streamed or downloaded on VIMEO here.

Originally created to raise awareness among government health policymakers and the general public in Japan and screened domestically since its completion in 2018, the new English-subtitled film (produced from an abridged version targeted to Japanese medical professionals) brings the film to an international audience for the first time.

The situation of Japanese ME/CFS patients has long been unknown outside Japan. Most Japanese patients lack the English skills to access online information from abroad. Amidst this isolation, the Japanese government and medical profession have continued to neglect the disease as a “fatigue” illness with psychogenic factors for the past 30 years. It is also the story of Japan ME Association, founded by Mieko Shinohara, who fell ill with ME while studying abroad in the United States, and patients’ efforts to create much-needed change.

Recommended by the Japan Medical Association president and the former Japanese Society for Neurology president and receiving the strong support of patients and doctors alike, it is our hope that in sharing the documentary, Japan can begin to join the international ME/CFS community to advocate for patients’ lives.
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