Please refer to the recent debate that followed criticism of the NICE Guideline recommendations by those in favour of graded exercise and cognitive behaviour therapies and Dr Shepherd’s recent response to the British Medical Journal on this subject:
- The ME Association and NICE robustly defend clinical recommendations for ME/CFS | 12 July 2023
- BMJ Rapid Response: ME/CFS: Researchers question credibility of NICE Guideline | 17 July 2023
By Lincoln Tracy, The Medical Republic
Controversial guidelines have dropped support for graded exercise therapy and CBT, and some experts worry patients will miss out
A group of Australian and international clinicians have been met with backlash after they critiqued the latest NICE advice against exercise and cognitive-behavioural therapy for patients with chronic fatigue syndrome.
Professor Paul Glasziou, GP and director of the Institute for Evidence Based Healthcare at Bond University co-authored a review highlighting concerns with the development of the guideline and the harms it may have on patients.
The latest 2021 NICE guidelines now say graded exercise therapy should not be provided to patients with mild to moderately severe chronic fatigue syndrome, also known as myalgic encephalomyelitis. It also says cognitive-behavioural therapy is only beneficial for managing symptoms rather than being “a treatment of the core illness…”
Professor Glasziou was met with resistance on X (formerly known as Twitter) when he posted about the paper, with one user arguing it put “millions of people’s lives in danger”.
“These discussions are so irritating for patients because the starting assumption is that patients are unreliable witnesses to their own condition and that it’s unclear whether exercise aggravates the illness. It’s crystal clear that it does,” another posted…
Professor Glasziou told TMR that while there were a small number of legitimate and constructive responses on social media that used facts or data, many more were simply disagreements at face value.
“A lot of the replies related to things we had explicitly supported in the paper, that [the commentators] just ignored. I assume it’s because people didn’t read the paper,” he said.
A NICE spokesperson defended the updated guidelines in a report published by The Guardian.
“We reject entirely the conclusions drawn by the authors of this analysis, and in particular their conclusion that NICE has not followed international standards for guideline development which has led to guidance that could harm rather than help patients,” the spokesperson said.
“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.”