We have a new poll about the delayed NICE Guideline and your reaction to it. See the notes below from Dr Shepherd and you can enter the poll below.
Have the Royal Colleges behaved responsibly in obstructing publication and implementation of the new NICE guideline on ME/CFS?
- Yes, they have acted responsibly (4%)
- Not sure (2%)
- No, they have acted irresponsibly (94%)
Total Voters: 1,789
A NICE guideline committee (Dr Charles Shepherd was a member) has spent nearly 4 years examining all the relevant evidence from clinical trials, medical experts and patients on the diagnosis and management of ME/CFS
The committee produced a working daft of the new guideline in November 2020 for stakeholder consultation
This draft made it clear that ME/CFS is a serious and debilitating medical condition and gave special attention to the management of children and young people and those who are severely affected
It also emphasises the need for early and accurate diagnosis and the availability of properly funded multidisciplinary hospital based referral services that can help with diagnosis and all aspects of management
Of particular importance to the ME patient community is the fact that the working draft removed the recommendations in the current guideline on the use of CBT and GET to treat ME/CFS
The MEA welcomes and supports all the recommendations in the new guideline
However, publication of the new guideline on August 18th has been delayed as a result of the Royal College of Physicians and the Royal College of Paediatrics and Child Health (and possibly two others) objecting to the removal of CBT and GET as recommended treatments for ME/CFS
The MEA believes that their intervention is both unhelpful and unreasonable – given the fact that the guideline committee and NICE have both approved the final version and the preparation has been subjected to a lengthy stakeholder appraisal process
The time has come to publish and implement the new guideline without any further delay.