Discussion in 'Advocacy Projects and Campaigns' started by Andy, Jan 21, 2018.
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!
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.
How can we watch the Japanese film? Does anyone know?
I can't find any more details other than this on their homepage
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!
Thanks for finding it @Effi! Very interesting. Several scenes from this trailer appear in Unrest!
“Hope to these Hands: The Reality of ME/CFS” It’s feels like an Unrest(ed) Deja Vu...
For more reads... click in the link:
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"
Agreed. These might also be useful/make an impression at ME/CFS protests. They look impractical for everyday use, but what do I know?
They'd be awful for me ... oxygen saturation drops a lot if I lie on my back, or even if I lean back sitting in a normal chair.
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.
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.
From my understanding, JMEA President and ME patient Mieko Shinohara, appears in Unrest.
@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!
I think my genetic mutations came from Singapore end of Second World War
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