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

I had signed global but didn't realize I could also sign UK petition. Done-appreciate all the reminders. I need them
Technically, if your indicated location is correct, you shouldn't be able to sign the UK one, as its for UK residents only.

I'm constantly surprised by the lack of signatures that these petitions have got but I appreciate people can have petition fatigue.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
I think a thing with ME is memory isn't very specific. I can't remember which petitions I've signed or which campaigns I've donated to! I saw the Rituximab news report and couldn't remember if it was something I'd donated to.

Anyway the signatures are going up 3,847signatures on the uk one
https://petition.parliament.uk/petitions/166601

If in doubt try to sign again. It won't let you sign twice. This is probably worth adding when sharing "can't remember if you've signed this petition already? Try signing it, it will stop you signing twice."

I've heard that this is more than previous ME signatures (only UK folk can sign). But I believe that we can get a lot more people to sign.
 
Messages
2,125
But I believe that we can get a lot more people to sign.
Whatever you might think of the concept, on the thread I set up 'spreading the word' there is a list of several more 'obscure' ME forums. If everyone took one and posted about the #stopGET petitions and asked people to post on social media.........? might help.

eta: link to the thread
http://forums.phoenixrising.me/index.php?posts/792243/

also see list of UK support groups page 68:
http://forums.phoenixrising.me/index.php?posts/788645/
 
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Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
This morning I've been sharing on the various POTS groups and pages. The POTS community is a strong contender to get what we're saying and take our word that we know what we're talking about. There's a considerable overlap between our communities (I'm on these groups as someone with POTS not just a pwme trying to get their attention).

This is one of my posts if you want to adapt it https://www.facebook.com/groups/PosturalOrthostaticTachycardiaSyndrome/permalink/10155054862904225/

Are you in other spoonie groups? Eg fibromyalgia, EDS etc etc
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Visit http://www.stopget.org/ for the background detail or use the links below to go straight to the petitions.

UK, now at 3,997. 10,000 needed for response from Parliament.
https://petition.parliament.uk/petitions/166601
UK citizens, please also sign the global one below.

Global, now at 4,272.
https://my.meaction.net/petitions/stop-graded-exercise-therapy-trials-for-me-cfs

Sign now to stop trials using GET on ME sufferers (especially on children i.e. MAGENTA)
UK now 3999!
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
UK now 4133 it's great to get this boost as we only have until 12th March

Share, share, share anywhere you can think of an overlapping connection, eg if sharing in feminist groups bring out that ME is majority female, in parent groups mention child research etc

10,000 will trigger a government response and that is still something to aim for but there are more diverse uses too. In correspondence with the ethics committee we can show how many people share the concern (not just the group directly writing the letter). In trying to engage established journalists more signatures indicate that there is a swell of interest behind the story and we genuinely represent pwme voice.

It is not a vociferous minority view but it appears we are still required to prove that. Polls and petitions are a great tool for this purpose.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
One idea for promoting the petitions quickly is to ask people with a large following to share (but not very high profile celebrities, they mostly have alerts turned off). eg if you're on twitter you can sort through your followers using www.socialrank.com (eg you could filter by United Kingdom, 10,000-100,000 followers, Activity: recently tweeted and ask the top 10 individually to share https://petition.parliament.uk/petitions/166601). Remember who you've tweeted at though, we probably can't get away with doing this more than every few months to the same people.

Is there anything like this for Facebook or other social media apps?
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
It would be great if everyone following this thread could have a look at the petition map
http://petitionmap.unboxedconsulting.com/?petition=166601&area=eng

And see if you know anyone in the areas which haven't signed (and directly ask them to sign, rather than a general share). There's only a few days left, but also only constituencies missing, so seems doable. The map already demonstrates widespread support but getting every constituency would be stronger.
C50hiZAXMAEQYCm
 
Visit http://www.stopget.org/ for the background detail or use the links below to go straight to the petitions.

UK, now at 5,135. 10,000 needed for response from Parliament.
Only a few days left, deadline for signing is 12th March.
https://petition.parliament.uk/petitions/166601
UK citizens, please also sign the global one below.

Global, now at 4,451.
https://my.meaction.net/petitions/stop-graded-exercise-therapy-trials-for-me-cfs

Sign now to stop trials using GET on ME sufferers (especially on children i.e. MAGENTA)
 
Visit http://www.stopget.org/ for the background detail or use the links below to go straight to the petitions.

UK, now at 5,583. 10,000 needed for response from Parliament.
Only a few days left, deadline for signing is 12th March.
https://petition.parliament.uk/petitions/166601
UK citizens, please also sign the global one below.

Global, now at 4,456.
https://my.meaction.net/petitions/stop-graded-exercise-therapy-trials-for-me-cfs

Sign now to stop trials using GET on ME sufferers (especially on children i.e. MAGENTA)