Complaint about process of NICE review of ME/CFS Guidelines

Moderator note: post moved from Open - Forward ME Group CBT/GET Survey - Tell NICE your experiences


In my latest missive to NICE about LocalME Complaint, I was told that you can't make a complaint against NICE's processes!

Perhaps I should copy in the chair PB......and vice chair.
I wrote in the complaint letter with concerns about GET and CBT,

"Additionally and on a person note,
please find a 4 page reference from another NICE guidance document; sent as an attendee of both the NICE Engagement Meeting in January and the May Scoping meeting.
I would like to draw your attention to your documentation for a similar condition where you clearly state the aims and compliance required for NICE Guidance.
https://www.nice.org.uk/guidance/qs...RX5RCwDNHItdgT99A2Rh2Pqh8GPOt20EiQG1-B0e2eFzg

Having attended both NICE engagement meetings, it is my personal view that the process for the review of the ME and CFS Guidelines, and the constitution of the committee to date, (referenced within our LocalME letter of complaint) , may adversely effect a successful review outcome and endanger the successful delivery of the revised guidance for ME.

Patient experience and safety issues, highlighted within our letter, remain unaddressed.

https://www.nice.org.uk/guidance/qs...RX5RCwDNHItdgT99A2Rh2Pqh8GPOt20EiQG1-B0e2eFzg

"How this quality standard supports delivery of outcome frameworks:
NHS Outcomes Framework 2015–16

Adult Social Care Outcomes Framework 2015–16

Public Health Outcomes Framework 2013–16."

"Patient experience and safety issues

Ensuring that care is safe and that people have a positive experience of care is vital in a high‑quality service."


It is important to consider these factors when planning and delivering services relevant to ME and CFS."