Some posts from the public page of ME Association on Facebook:
https://www.facebook.com/meassociation
(I have inserted para spacing for ease of reading.)
ME Association
Publication of a completely new NICE guideline on the diagnosis and management of ME/CFS on Wednesday this week is going to be a major event in the history of this illness.
There is likely to be a lot of press interest (Times coverage already) and we will be providing extensive coverage on MEA social media all through the week.
The ForwardME group has been preparing a comprehensive public statement and a press statement on the guideline to co-incide with publication of the guideline.
I will be available on Wednesday and Thursday to take questions on the new guideline on MEA Facebook
Dr CS MEA
ME Association
The Forward ME group of charities and individuals has prepared a comprehensive general statement on the new guideline and a press statement
The press statement has been distributed today to all major news outlets and regional news outlets
I am currently dealing with several enquiries from the national media as a result....
Dr Charles Shepherd
Hon Medical Adviser, MEA
ME Association
RE IMPLEMENTATION OF RECOMMENDATIONS IN THE NEW NICE GUIDELINE
That’s a very good question!
This is something that the MEA will be considering in great detail once we know the reaction of people with ME to the recommendations that are contained in the new guideline
In very simple terms, NICE has also prepared comprehensive background information on various practical aspects relating to the implementation of the new guideline - including staffing and cost implications
If we assume that the new recommendations are very similar to those in the November draft, then this will clearly involve significant changes to way in which existing hospital based referral services diagnose and manage people with ME/CFS
I would hope that this process will involve meaningful consultation with people who already use these services and with the ME charity sector
As far as timescale is concerned, I would hope that any significant changes in management protocols will start to occur fairly quickly
And where there is a recommendation to stop using any form of treatment that is in the current guideline this will be acted on without delay
One very important point is that these are guidelines - doctors are not forced to rigidly follow every NICE recommendation and can still use their clinical judgement
But this obviously becomes very difficult if a doctor decides to use a treatment that is not recommended by NICE and a patient experiences harm as a result
In this situation such action could be regarded as medical negligence
Dr CS MEA