Andy
Retired committee member
Thread on that here, United Kingdom: Petition Change.org: for a new mechanism by which M.E/C.F.S patients can report harms.Thought I should add Sally Callow’s #ShakeItUp Campaign details in here, because she continues to work on this.
See the ‘Updates’ section of the petition, where she details replies received or thoughts on the next steps
eg July 2022 - not connecting with Rt Hon Steve Barclay yet, when the post of Secretary of State to the DHSC (Dept of Health & Social Care) may be changing yet again, in September, when a new cabinet is formed by the new leader of the Conservative party.
https://www.change.org/p/department...non-pharmaceutical-treatment-harms/u/30731538
The DHSC and NHS England believe that no mechanism is required because NICE Guidelines say GET/(and ‘the wrong sort of’) CBT is not to be used.
Except we all know that they are still used, under numerous different names.
Plus, if a person is diagnosed with MUS/FND then the Guideline on ME/CFS can be ignored
We are still being sent around in circles.
The new NICE Guidelines advise that all problems (harms) should be reported - under ‘Your Responsibility’:
https://www.nice.org.uk/guidance/ng206 :
“All problems (adverse events) related to a medicine or medical device used for treatment or in a procedure should be reported to the Medicines and Healthcare products Regulatory Agency using the Yellow Card Scheme.”
But MRHA have absolutely no method of recording harms caused by non-pharmaceutical or non-mechanical treatments
This is likely to need to go all the way to an Inquiry (in the same way as Baroness Cumberlege’s investigations for The Independent Medicines and Medical Devices Safety Review
https://www.immdsreview.org.uk/Report.html )
and thread on the Parliamentary petition that didn't get sufficient support, United Kingdom: Petition: Set up a national harms reporting scheme for non-pharmacological treatments