Petition: Remove CBT/GET from NICE guidelines NOW (ALL COUNTRIES can sign)

NICE has promised to review its current guidelines on ME/CFS, which is not scheduled to be completed until 2020. Meanwhile it has left the current guidelines in place, despite the recommendations for treatments that are known to be harmful.

https://www.change.org/p/nice-stop-harming-me-cfs-patients-remove-cbt-get-out-of-nice-now

 

Can anyone ask Jen Brea to tweet this?

 

Great idea. Sorry, don't tweet but am considering it after last few days. I want to know the MPs who have tweeted support to send their names on to my MP in the hope that a group will form to push things on.

 

I don't tweet either, but i don't have the cognitive fortitude to sign up and figure it out these days.

 

Same here. I think that's what has been putting me off. But it might be becoming a necessity in this line of work!

 

Done.

 

done too

 

And me..

 

Me too.

 

It's on Jane Colbys twitter feed and #MEAction
https://twitter.com/user/status/967011838650212352


eta: and on MEA

 

Signed and shared to Facebook groups

 

Signed.

 

Done

 

Signed it and Tweeted it.

 

1404 signatures so far...

 

Is there any precedent of NICE adding a note to guidelines or withdrawing treatment before the end of a review?

 

"
13.4 Withdrawing the guideline
Sometimes NICE's Guidance Executive decides that the recommendations in a guideline no longer apply, but that the guideline is not of sufficiently high priority for updating. In this case NICE's Guidance Executive will recommend that the whole guideline or specific recommendations are withdrawn. This decision will be consulted on with registered stakeholders."
"
13.5 Exceptional updates
Exceptionally, significant new evidence may mean an update of a guideline is agreed before the next scheduled check of the need for updating (particularly when safety or safeguarding issues need to be addressed).

The evidence might be a single piece of evidence, an accumulation of evidence or other published NICE guidance. Examples include significant data from published studies, changes in licensing and patents or warnings issued by licensing agencies, major changes in costs or changes in legislation."
"
Determining the need for an exceptional update
The NICE Centre responsible for the guideline advises NICE's Guidance Executive on the need for an exceptional update and which recommendations are being considered for updating. The Centre also advises on whether there is any other evidence (published, unpublished or from ongoing studies) that is relevant.

If NICE's Guidance Executive decides that an exceptional update is needed, registered stakeholders are informed of the planned approach."

 

Signed, making it 1478