UK ME Action campaign against NICE guidelines

[Andy]

Moderator note:
Copied from thread here
https://www.s4me.info/threads/uk-stop-graded-exercise-therapy-for-me-cfs.1301/#post-195995

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/

 

[Andy]