The National Institute for Health and Care Excellence has published updated guidance on the diagnosis, management, monitoring and review of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
The current guidelines identify the symptoms of the illness as debilitating fatigue which is worsened by exercise and activity, sleep disturbance and cognitive difficulties.
Existing therapy consisted of an exercise programme called graded exercise therapy (GET) which involved gradually building up intensity levels of activity to build the patients tolerance.
It is estimated that there are over 250,000 people in England and Wales with ME/CFS. The condition affects 2.4 times more women than men.
Baroness Finlay, Consultant in Palliative Medicine, Clinical Lead for Palliative Care for Wales, Velindre NHS Trust, and vice-chair of the guideline committee, said: “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.”
Paul Chrisp, director of the Centre for Guidelines at NICE, added that, “as well as bringing together the best available scientific evidence, we’ve also listened to the real, lived experience and testimony of people with ME/CFS to produce a balanced guideline which has their wellbeing at its heart. NICE hopes that system partners and the ME/CFS community will work together to make sure these important recommendations are implemented.”
Going forward, patients who suffer from ME/CFS will be given personalised plans which fit their lifestyle accordingly. GET will only be offered once a patients exercise capability is established and should always be overseen by a specialist physiotherapist.
Sian Leary, from Campaign group ME Action UK, said: ‘This is a huge step for people with ME. Finally, science is winning over stigma and paternalism in healthcare, and we can move towards better care for the thousands living with this devastating disease.”
The complete guidelines on ME/CFS can be read here.