Reprinted with the kind permission of Stop Graded Exercise Trials.
People with ME know that graded exercise therapy is very unpopular amongst patients and most of us have us have heard horror stories. However, this isn’t what the general public expect when they hear about it. The name does not match our experience:
Graded sounds gentle
Exercise, that’s good for everyone, right?
Therapy has connotations of healing in a supportive environment
Personal stories can be a useful tool for making a heartfelt connection with the general public, especially for a topic like this which is counterintuitive.
For ME Awareness month (May) and Millions Missing we want to share your experiences of graded exercise therapy. We will post your story here and share in various places online.
If you or someone you know has a graded exercise therapy story to tell:
Email GETpetition@gmail.com your story in a couple of paragraphs.
Points to consider
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If you’ve already written a suitable blog post about GET, the most energy efficient solution is to simply send us the link and we’ll repost it (perhaps you want to add a bio paragraph to promote your blog?).
If you are writing something new, these are some pointers:
Concrete examples of how your health and limitations changed are helpful (or perhaps there was no difference?).
How did you feel after GET?
Did it stop you doing certain activities?
How long did the impact last?
How did medical staff respond? Were you allowed to stop the treatment without consequences?
Imagining that the person reading knows nothing about ME could help you explain.
Do you have pictures you are comfortable sharing? Visible before and after GET changes would be particularly poignant.
Your story will be shared widely. Do you want to use a pseudonym or do you want to use your real name (plus contact details)? Please make this very clear.
Please also ask people you know who have a powerful story to contribute. We are particularly interested in hearing about children who have done graded exercise therapy.
A specific hashtag for this is #MissingMoreGET
So we can share on social media with various combos of #MissingMoreGET and #MillionsMissing #MEawarenesssmonth #stopGET #May12 etc
To get updates when Missing More posts are published, follow us on:
Twitter: @stopGETteam / @MEActNetUK