UK: Stop graded exercise therapy for ME/CFS

[PandaEyes]

STOP GRADED EXERCISE THERAPY TRIALS FOR ME/CFS

“We, the undersigned, call on the UK Government and the responsible ethics, funding and approval committees, to stop trials of graded exercise therapy (GET) in children and adults with myalgic encephalomyelitis.”

You can find more information at: http://www.stopGET.org

Are you a UK citizen or resident? If so, sign this UK parliament petition: https://petition.parliament.uk/petitions/166601.

- via
https://my.meaction.net/petitions/stop-graded-exercise-therapy-trials-for-me-cfs

 

[Sasha]

That petition is closed, @PandaEyes.

 

[arewenearlythereyet]

I signed it when it was live though

 

[Woolie]

But do keep posting stuff, @PandaEyes!

 

[TiredSam]

That petition is closed, @PandaEyes.

It just thinks it's closed. Let's all just keep signing it until it opens again.

 

[Jenny TipsforME]

The global petition is still open and the general campaign hasn’t finished (though it’s perhaps a bit sleepy )

See

@stopGETteam on twitter

http://www.stopget.org/

https://m.facebook.com/stopGET/

https://my.meaction.net/petitions/stop-graded-exercise-therapy-trials-for-me-cfs

http://www.stopget.org/category/missingmoreget/

We’re currently in the process of writing more info about patient surveys.

 

[Sasha]

The global petition is still open and the general campaign hasn’t finished (though it’s perhaps a bit sleepy )

See

@stopGETteam on twitter

http://www.stopget.org/

https://m.facebook.com/stopGET/

https://my.meaction.net/petitions/stop-graded-exercise-therapy-trials-for-me-cfs

http://www.stopget.org/category/missingmoreget/

We’re currently in the process of writing more info about patient surveys.

I think that needs a new thread, then, Jenny.

 

[Andy]

The global petition is still open and the general campaign hasn’t finished (though it’s perhaps a bit sleepy )

See

@stopGETteam on twitter

http://www.stopget.org/

https://m.facebook.com/stopGET/

https://my.meaction.net/petitions/stop-graded-exercise-therapy-trials-for-me-cfs

http://www.stopget.org/category/missingmoreget/

We’re currently in the process of writing more info about patient surveys.

As part of our ongoing advocacy work, #MEAction UK has been campaigning for the National Institute for Clinical Excellence (NICE) to update the current ME guidelines.

Updated ME/CFS guidelines are due to be published in October 2020. However in the meantime, the existing guidelines published in August 2007 that recommend Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) still stand. #MEAction has been continuously campaigning for NICE to add interim warnings to the existing guidelines stating that CBT and GET should not be used due to the harm they cause to patients with ME. Patient surveys totalling over 16,000 respondents clearly demonstrate this. Most recently the Forward ME Group, of which #MEAction UK is a part, conducted a survey about the impact of GET and CBT on patients. 2274 respondents confirmed that GET is harming a large majority of people with ME receiving this treatment in the UK. A majority of people with ME report that CBT led to no change in their physical health; however those who reported a change after CBT were more likely to experience deterioration than improvement.

https://www.meaction.net/2019/08/27/nice-drag-their-feet-on-stopping-the-harm-caused-by-get-and-cbt/


Moderator note:
More on ME Action UK campaign here
https://www.s4me.info/threads/uk-me-action-campaign-against-nice-guidelines.11585/