Jenny TipsforME
Senior Member
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- 1,184
- Location
- Bristol
You should have heard about the #stopGET petitions to suspend/stop graded exercise therapy trials in the UK by now. If not, SIGN NOW AND SHARE, SHARE, SHARE!
The stopGET team could do with personal GET stories for press releases, articles, blog posts. If you or someone you know has a bad GET story to tell:
If someone (eg @JaimeS @Keela Too @katharine_c @Sasha @AndyPR @Tom Kindlon or anyone else who wants to take this on) could share this on relevant facebook groups that would be much appreciated. Please comment if you've done this so we don't waste spoons.
- UK petition (we need 10,000 signatures): https://petition.parliament.uk/petitions/166601
- Global support petition everyone can sign: https://my.meaction.net/petitions/stop-graded-exercise-therapy-trials-for-me-cfs
- Info to share for people who won't immediately get it: http://www.meaction.net/2016/09/12/uk-and-global-petition-its-time-to-stop-get-trials-for-mecfs/ and the campaign site www.stopGET.org
- Ideas for publicising the petition yourself: https://tipsforme.wordpress.com/2016/09/15/petition-publicity/
The stopGET team could do with personal GET stories for press releases, articles, blog posts. If you or someone you know has a bad GET story to tell:
- Email GETpetition@gmail.com your story in one or two paragraphs (and add here if you want to)
- It would be particularly interesting to hear from people who did GET as a child and parents of children (but all ages appreciated).
- Concrete examples of how your health and limitations changed are helpful.
- How did you feel after GET?
- Did it stop you doing certain activities?
- How long did the impact last?
- 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.
If someone (eg @JaimeS @Keela Too @katharine_c @Sasha @AndyPR @Tom Kindlon or anyone else who wants to take this on) could share this on relevant facebook groups that would be much appreciated. Please comment if you've done this so we don't waste spoons.
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