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CFS/ME specialists in Japan

Messages
14
Hi all,

Long shot, but I moved here about 9 weeks ago from the UK and I’m sure this is what’s going on (everything else appears to be excluded) and it’s getting worse, and quickly. If anyone is in japan and knows of any specialists or doctors that have a special interest that would be so helpful.

Thanks
 

Daffodil

Senior Member
Messages
5,873
We have a big problem conflating chronic fatigue and ME/CFS.
I think this was real ME/CFS. long ago much earlier on in the illness, when people thought it was HHV-6 issues, they said that in Japan, people had more HHV6a and we have more HHV6b or something....i cant recall details....

but maybe they do mix stuff up. i watched a very interesting document on hikkikomori(?) ..how hundreds of thousands of young men are becoming recluse and not leaving their rooms for years.
 

Hajnalka

Senior Member
Messages
910
Location
Germany
Just putting my ME-ideas on Japan out there, maybe they could be leads (but probably don't help in your current situation).

An article from 2017 about the situation in Japan (including a patient survey).
People with ME in Japan are organizing a translation of Unrest into Japanese, so there are advocacy efforts. I'd try to reach an advocacy group for information.
If I remember correctly there was a brain imaging study on ME done in Japan (very long shot, but maybe these researchers are/know doctors).

Also I like the cat mascot at ME events.
Japan1.jpg
 
Messages
14
Just putting my ME-ideas on Japan out there, maybe they could be leads (but probably don't help in your current situation).

An article from 2017 about the situation in Japan (including a patient survey).
People with ME in Japan are organizing a translation of Unrest into Japanese, so there are advocacy efforts. I'd try to reach an advocacy group for information.
If I remember correctly there was a brain imaging study on ME done in Japan (very long shot, but maybe these researchers are/know doctors).

Also I like the cat mascot at ME events.View attachment 24750
Hi Joh, would this be the RIKEN research group that did the study under dr Yasuyoshi wantabe being the main lead?
Thanks for your reply.
 

Hajnalka

Senior Member
Messages
910
Location
Germany
Good luck! It must be very difficult with the additional language barrier. If it's any consolation, you're not alone with this struggle to find a doctor - a lot of people with ME/CFS were even after decades of illness never able to see a specialist or receive any treatment. Access to treatment is one of the things that is desperately needed and why advocacy is so important.
 
Messages
14
Good luck! It must be very difficult with the additional language barrier. If it's any consolation, you're not alone with this struggle to find a doctor - a lot of people with ME/CFS were even after decades of illness never able to see a specialist or receive any treatment. Access to treatment is one of the things that is desperately needed and why advocacy is so important.

Yes, I can see it’s a problem and the language doesn’t help. From reading I can see that it seems many people think that treatment of some kind early on is an important factor in their overall recovery so I want to do my best to make that happen while I’m feeling particularly terrible with what I’m 99% sure is cfs.
 

TenuousGrip

Senior Member
Messages
297
I don't know anything about anything but what about Dr. Kunihisa Miwa ?

If memory serves, he posted quite a few rather important papers about cardiac issues within the ME/CFS patient population. If he doesn't actually treat PWME I'm guessing that he might know who does ?

Good luck !