NICE ME/CFS Guideline Roundtable discussion still ‘under wraps’


On 21 September NICE announced the Roundtable would be held on Monday 18th October in London and they would be inviting:

“relevant professional organisations to attend the meeting, plus representatives from interested patient groups. Unfortunately there are too many patient groups to invite everyone, but we have aimed to ensure a full range of perspectives.”

Forward ME has since announced that the participating patients groups will be:

Forward ME, ME Association, Action for ME, #MEAction, Science for ME, ME Research UK, the 25% group, Tymes Trust, ME Trust.

A number of the groups have confirmed they have signed a confidentiality agreement and are therefore unable to comment or release any information about the agenda, which is to be given to the participants, ahead of the meeting.

The Chair will be Professor Dame Carole Black who “will facilitate the discussion and will not take part in NICE decisions.” NICE has confirmed there will be no video produced of the meeting but minutes will be published afterwards. Going by other minutes NICE produces these could contain only the bare minimum.

The aim of the meeting has been described by NICE as:

“to inform NICE’s thinking on the next steps for publication of the guideline.”

“to discuss key issues raised prior to publication” “from representatives of Royal Colleges and NHS England”

“the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved”

“to reach a way forward to publish a guideline that will have the support of people living with ME/CFS, the people who care for them and the professionals who treat them.”

“to ensure the effectiveness” of the guideline”

Any decisions will be taken by the senior NICE executive team after the meeting. No timetable has been given for that.

An Update On The NICE Roundtable From #MEAction UK

Forward-ME: Statement for people with ME

See also

NICE delays Roundtable – no invite for WAMES!

NICE – ME community response to ‘Roundtable’ announcement

WAMES ponders the NICE guideline shockwave

WAMES responds to NICE ’roundtable’ announcement

WAMES writes to NICE

NICE ‘pauses’ publication – links to articles & comments

This entry was posted in News and tagged , , . Bookmark the permalink.

Leave a Reply

Your email address will not be published. Required fields are marked *