Clare Ogden, head of communications and engagement at UK charity Action for ME, said that Nice’s previous guidelines had been produced with “what Nice believed was the best available evidence at the time but it’s become abundantly clear from patients that their experiences differed from that”.
Nice last issued recommendations on chronic fatigue syndrome in 2007. The new draft guidelines state that it is a complex condition with no one treatment suitable for everyone, “particularly where there is the potential for an intervention to benefit some people but cause harm in others”.
Even with support from a specialist, only about one in 10 patients reported that exercise therapy helped manage symptoms, while nearly half reported a worsening effect, according to a
4,000-patient survey conducted by Action for ME last year.