From Stop Graded Exercise Therapy.
Missing More after graded exercise therapy is a series of posts from the perspective of people with ME for ME Awareness Month (May). If you have a story to share about exercise and ME see this post for instructions about how to contribute.
Graded Exercise Therapy (GET) is one of the two main ‘treatments’ for ME in the UK, under current clinical guidelines. Many people with ME are aware of the problems with exercise and ME and are reluctant to risk getting worse. A concern many of us have is about what happens when you refuse the official therapy, especially if you refuse on behalf of a child. Here Ann* shares her experience of trying to resist graded exercise therapy on behalf of her daughter Sara*:
My profoundly ill daughter Sara, was in hospital, bedridden unable to tolerate light, noise, most foods, the presence of people in her room, unable to talk without severely impacting on her health. She was deteriorating before our eyes.
The doctor recommended graded exercise therapy and when we refused it he wrote “resistant to care” in her notes. From that point on many of the nurses became abusive towards her, bright lights on needlessly, loud talking, the door left open. Her deterioration speeded up rapidly due to the “exertion” of coping with the lights, noise…
To read the rest of this story, click on the link below: