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The Japanese MEA fighting the imposition of GET and PACE

Countrygirl

Senior Member
Messages
5,387
Location
UK
The Japanese ME Association is fighting the imminent imposition of GET as PACE is accepted.


https://mecfsjapan.com/2017/12/15/410/

Our Opposition to Proposed National Treatment Guidelines for ME/CFS
pressconference.jpg
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.)
 
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366
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.
With all the criticism of the PACE trial that people can still support GET for ME/CFS.. It really seems more about having the false belief-system that this disease should improve by training it off than about scientific evidence.

I had the thought yesterday, how shocking it is that some beliefs are simply put out there, about what ME/CFS is and what should help, without any science to back it up. This is completely contrary to the way medicine should work, not by beliefs but based on measurable results and science.
But then, if you look closely, you can see that medicine doesn't work like that in a few areas. The body is so complex and we just don't understand a good part of it yet so beliefs fill that gap in a few places.

There is no diagnostic marker for alzheimer's or depression. B12 deficiency for example can cause psychiatric symptoms, or confusion and memory loss and I have read of cases, where people with B12 deficiency were put into a psychiatric institution. So actually medicine breaks its principle of being science-based in quite a few places and slips into belief-systems.
 

IThinkImTurningJapanese

Senior Member
Messages
3,492
Location
Japan
@IThinkImTurningJapanese will this affect you? I don't really know about the politics of this kind of stuff..

They can't impose this kind of treatment on me, and they know it. :rofl:

Thank you so much for your concern though. Those who are the most vulnerable are minors with ME/CFS, followed by adults who aren't adept at asserting their rights in opposition to the group consensus.

This is dangerous territory. :cautious:
 
Messages
366
They can't impose this kind of treatment on me, and they know it. :rofl:
I'm glad to hear that :thumbsup::D


Thank you so much for your concern though. Those who are the most vulnerable are minors with ME/CFS, followed by adults who aren't adept at asserting their rights in opposition to the group consensus.

This is dangerous territory. :cautious:
It's really frustrating that they are still regressing in politics, even though there is progress in ME/CFS research:mad:
It seems like some people are protesting against this, hopefully that'll help.