Forward-ME response to the statement from NICE:
“Forward-ME have now had a number of direct communications with NICE regarding the delay, in which we have shared the concerns of the wider ME community. The guideline development process was robust and there is broad recognition that it stands up to scrutiny. It is clear that any guideline produced by this method should be published in full, and we are committed to achieving that.
“Forward-ME does recognise that the support of all stakeholders would benefit the roll-out of the new guidelines, and we understand the challenges that NICE have in achieving this. While we remain cautious about the situation, we are confident that any round-table will be conducted in good faith, and are reassured by the discussions we have had so far.
“If the Round Table does not reach the desired outcome with full publication of the new guidelines, Forward-ME and our members will take every possible step to ensure the final guidelines in their current form are published in full. Plans are in development to ensure we can act robustly if needed.
“People with ME deserve better, and we will continue to work together to achieve that.”
Stakeholders received the following announcement from NICE via email this morning:
NICE recognises the importance to patients of the updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) and is keen to move forwards as quickly as possible.
Following the pause to the publication of the guideline NICE has today, 27 August 2021, announced that it is to hold a roundtable event to better understand the issues raised and determine how it can gain support for the guideline to ensure effective implementation.
The meeting, which will be held in September 2021, will have an independent chair and will include representatives from patient organisations and charities, relevant professional societies and from NHS England and NHS Improvement, NICE and the guideline committee.
Paul Chrisp, director for the Centre for Guidelines at NICE, said:
“Our aim throughout this process has been to use the best available evidence as well as the lived experience of people with ME/CFS to address and resolve the continuing debate about the best approach to treating people living with this debilitating condition. We remain optimistic that we can 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.”
Update: NICE has confirmed that the roundtable event scheduled for September will now take place in October. The ME Association has been invited to the roundtable discussion and a representative of the charity will be attending.
Please note: The MEA is bound by a confidentiality agreement and if we break this agreement we could potentially be removed from the roundtable, therefore we are unable to comment on any social media posts referring to this scheduled discussion.