Emerge Australia is very disappointed to learn that the UK’s National Institute of Health and Care Excellence (NICE) has announced that it has paused the publication of its new ME/CFS clinical guidelines, which had been due to be released on August 18. This is a devastating development for ME/CFS patients around the world, especially those in the UK who have waited years for these new guidelines 

The draft of the new guidelines, released late last year, represented a significant shift in the medical treatment of ME/CFS in the UK, with graded exercise therapy (GET) and cognitive behaviour therapy (CBT) no longer recommended as primary treatments for the condition. The draft guidelines stated that patients should not be offered “any therapy based on physical activity or exercise as a treatment or cure for ME/CFS” and that treatment should “not assume people have ‘abnormal’ illness beliefs and behaviours as an underlying cause of their ME/CFS”. These recommendations were based on an extensive review of ME/CFS clinical trial evidence. 

In its statement, NICE indicated that, 

NICE has used its usual rigorous methodology and process in developing this guideline but despite the best efforts of the committee, that followed these to the letter to bring together the available evidence and the real, lived experience and testimony of people with ME/CFS, we have not been able to produce a guideline that is supported by all … However, unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need.” 

It is disappointing that, despite the rigour of NICE’s process, including a thorough evidence review and public consultation process, some UK medical groups appear to have refused to support these evidence-based guidelines. It is imperative that medical care is based on scientific evidence, to ensure that patients receive effective treatments and the risk of harm is minimised.  

Dr Alastair Miller, a UK physician, noted that “without CBT and GET, there is nothing”. We agree. Removing GET and CBT as primary treatments for ME/CFS reveals the reality of what patients with this condition face: a lack of effective treatments.  

However, this is not justification for continuing to recommend ineffective treatments, especially treatments which pose a risk of harm to patients. Rather, this highlights the need for greater research funding into both the pathophysiology of ME/CFS and clinical trials to identify effective treatments. Emerge Australia continues to strongly advocate for increased investment into ME/CFS research, as we believe this is essential for improved medical care for those living with the condition.  

We 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. We are hopeful that this is merely a delay, and that these much needed guidelines will be published in due course.