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

Jenny TipsforME

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
slysaint said:
It would appear we are not the only ones:
http://www.nationalelfservice.net/p...ession-according-to-a-reanalysis-of-rct-data/
Click to expand...
Yes but note that the non directive therapy here is not CBT it is counselling. My impression is that CBT is usually in the category of directive therapy. This isn't quite how we're using the term. We mean a sort of perversion of CBT where there's encouragement to increase activity in a disease that is made worse by increasing activity.
 
Jenny TipsforME

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Anyway getting back on topic, in Wales and Northern Ireland there are #stopGET signers in every constituency!

There are a few constituencies missing in England and Scotland but not many.

It would be something to get the whole of the UK cov er red. This seems like something that could be used in articles. One of the things that we come up against is that it is the concern of a handful of nutty/uninformed hardline patients. Having such a wide reach dismisses this eg "there is such widespread concern about GET research that people have signed from every constituency in the UK". It would be good to be able to say this.

Please check the map and share, to see if we can colour in the few remaining grey areas. http://petitionmap.unboxedconsulting.com/?petition=166601
Perhaps you can make your constituency the darkest on the map!?
 
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MeSci

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
AndyPR said:
Recent crash for me has meant I haven't been doing my regular routine of updates but also as signatures had slowed down I had stopped daily updates on this in particular, didn't see the point in an update to say that no new signatures had been added. :)
Click to expand...
Sorry to hear you're poorly too, AndyPR. Looks like it's still going up, so maybe others can keep us up to date?
 
Jenny TipsforME

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Yes updates useful.

Another update is that Wales and Northern Ireland have signers in every constituency. Scotland was only missing 4 yesterday so I took that angle on Twitter, trying to get all of the map coloured in. Useful for article writing to evidence such widespread concern (eg not a fringe group in Bristol!).

Can you think of other angles? What about easy ways to engage people who know nothing about ME?

We don't expect the petition to increase steadily, there will be times when it suddenly goes up in response to actions. Our efforts also can't be consistent because we're ill and have to accept that's the situation we'rein.
 
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AndyPR

Senior Member
Messages
2,516
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Guiding the lifeboats to safer waters.
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AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Jenny TipsforME

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Today I've got a #stopGET and FITNET article in the print edition of the Bristol Cable (a cooperative newspaper which likes proper investigative journalism, so generally a good paper to keep in the loop with ME politics). It is short but to the point, and the point I'm making is that children with ME need relevant research, not pressure to do more,more, more.

On the 24th January this will be available online at https://thebristolcable.org/ so it would be great if people could share then.
 
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AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
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