#MEAction petition: Stop GET trials, stop MAGENTA ("PACE for children") ***UK deadline 12th March***

Jenny TipsforME

Jenny TipsforME

Senior Member
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Location
Bristol
Once MM PEM has faded, the stopGET team could do with more 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

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 is 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 explain.

Do you have pictures you are comfortable sharing? Visible before and after GET changes would be particularly amazing.

Your story might be shared very 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, the person reading your email is likely to be me with brainfog!

Please also ask people you know who have a powerful story to share.
Perhaps this should be a thread?
 
Countrygirl

Countrygirl

Senior Member
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5,670
Location
UK
Just seen a comment on FB that reports that the This Morning programme at about noon today gave the floor to a doctor who informed viewers that ME should be treated with GET and CBT. Sigh!

It will be available on iplayer by tomorrow.
 
Snowdrop

Snowdrop

Rebel without a biscuit
Messages
2,933
Countrygirl said:
Just seen a comment on FB that reports that the This Morning programme at about noon today gave the floor to a doctor who informed viewers that ME should be treated with GET and CBT. Sigh!

It will be available on iplayer by tomorrow.
Click to expand...

It's not going to stop or go away quietly now that we perceive things as changing. The BPS have a clear agenda and they will not be thwarted.
Groups like AfME don't help and yet they get so much support still. It seems that some people accept playing politics of trying to appease both sides. I find support for anything to do with their agenda frustrating--it harms us all. This is not an issue to be divisive on. Lives are at stake --quite literally. Letting BPS get a pass in order to have something (either advocacy or research) results in continued harm.
 
Y

Yogi

Senior Member
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1,132
Jenny TipsforME said:
@Yogi I don't think this will neutralise #stopGET. But important that pwme keep sharing the petitions whenever and wherever you can. The team initiating stopGET hasbeen involved with MillionsMissing too and is suffering predictable PEM - so support with publicity is appreciated.

stopGET.org has info on background
Click to expand...


Thanks for that. Sorry to hear that about the team.
I think we just need to be aware of the neutralising effect given that they will use strong support of the other petition to justify Crawley's MAGENTA work.
 
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