After an initial delay, it was announced on October 29th, that the new National Institute of Health and Care Excellence (NICE) guideline (UK) for ME/CFS have finally been published.
The new guidelines represent a significant shift in the medical treatment of ME/CFS in the UK. In particular acknowledging that exercise programs can make ME/CFS worse and that cognitive behavioural therapy (CBT) is not a curative treatment.
This guideline has been in development over a long period of time – its publishing is a critical development in the diagnosis and management of ME/CFS globally. In Australia, the impact of this guideline together with a range of other initiatives currently being undertaken by Emerge Australia will lead to earlier diagnosis and improved management pathways for those with ME/CFS.
“ME/CFS is a complex long-term condition that causes disordered energy metabolism and can be profoundly disabling. Those with ME/CFS need to be listened to, understood and supported to adapt their lives. The committee members involved in this guideline have worked particularly hard to ensure care becomes more empathetic and focused on the individual’s needs.”
– Baroness Finlay, Consultant in Palliative Medicine, Clinical Lead for Palliative Care for Wales, Velindre NHS Trust, and vice-chair of the NICE guideline committee.
We would like to acknowledge and thank all involved in the development of these guidelines, especially the patients who have sacrificed much in contributing their meagre energy to this long process. This important work will have an impact for all people living with ME/CFS around the world.