I have created a slide series (below) to give a quick over view of the problem with graded exercise advice for ME patients given in NICE guidelines (UK).
M.E. patients & the problem with NICE advice on exercise from Sally Burch
Update 2016 - This paper by Mark Vink shows that data from the PACE trial itself, shows that there are no real benefits to either CBT or GET:
The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review
The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review
Live links for the slides:
Direct link to the YouTube video:
"Play-Up & Lay-Up" not "Boom & Bust" Sept 2014
Rhythm+ and Endomondo: HR monitoring for ME Aug 2014
The Exercise Catch 22! Jul 2014
ME Awareness - Why NOT Exercise? May 2014
A few notes on using a HR Monitor for Pacing Feb 2014
The Dilemmas of Exercise and M.E. Dec 2013
Thank you Sally for taking the time to put this together. As GET and CBT are currently recommended by the CDC here in the US, it is a struggle to get these points across to medical professionals who have increasingly limited time on their hands to learn enough to help their patients. I will surely share this with my GP. Hoping that someday soon ME/CFS will find a home with neurology specialists instead of lingering with general practitioners who cannot give it the attention it needs.
ReplyDeleteBest regards,
Debbie
Yes it seems GET is a bit of a global problem for ME patients!
DeleteHi, In 1976 two of South Australia's top medical researchers tried to convince me to ignore my symptoms and keep up with other participants in an exercise program, but I found it caused a lot of problems so I slowed down and did everything at my own pace twice a week for nearly a year.
ReplyDelete7 years later I was put in charge of a research project to help other people with the same method that I used and its success was reported as world 1st in newspapers.
Since then countless copyright thieves have stolen that method and called it pacing, and it is now used all around the world as the best method.
The copyright thieves are not using it properly and are causing a lot of patients problems, but they get all the credit, and all the financial benefits, so I am not prepared to tell them what they are doing wrong until that changes.
Max Banfield
Thank you for your comment, I wasn't aware that pacing was a copyrighted concept, nor that its origins were from a research project you conducted. However I also see quite a bit of variety in how pacing is applied. At its simplest, I understand pacing to be just a way of keeping within the boundaries imposed by the illness, and not ever aiming to push on for progress.
DeleteI hope, if you have a way to help patients, that you will publish your protocol and in so doing receive appropriate recognition. However it is also my hope that medical treatments will eventually lead to a treatment that could do away with the need for any pacing at all!