NICE chronic fatigue syndrome guidance questioned

Research has questioned guidance from the National Institute for Health and Care Excellence (NICE) that people with chronic fatigue syndrome should be discouraged from using graded exercise therapy and cognitive behavioural therapy to manage their condition.

The study, published in the Journal of Neurology, Neurosurgery and Psychiatry, questioned NICE’s review process for coming up with the new guideline, arguing it had methodological, scientific, statistical and epidemiological flaws.

One of the study’s lead authors, Professor Trudie Chalder from the psychiatry department at King’s College London, told The Guardian: “The decision to change the guideline has had a direct effect on doctors’ and therapists’ ability to treat patients. Services are no longer able to provide a full range of evidence-based therapeutic interventions.

“This could have a devastating impact on people’s lives in that they will no longer be able to access the treatment that could help them the most.”

The NICE guidance was designed to update a recommendation from 2007 that had argued in favour of graded exercise therapy and CBT for managing chronic fatigue syndrome.

The new guideline recommensd energy management, providing advice on how to live with the illness and make the best use of energy.

Co-author on the review Paul Garner, a professor at Liverpool School of Tropical Medicine, also told the newspaper: “NICE has not followed international standards for guideline development, which has led to guidance that could harm rather than help patients.”

However, NICE has robustly defended its guidance, with a spokesperson saying it rejected “entirely” the conclusions drawn.

“In developing our guideline, as well as bringing together the best available scientific evidence, we 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,” the spokesperson said.