The following is an updated version of an article written for the autumn 2017 issue of Breakthrough magazine. As you will see, recent developments mean that the story now has a potentially happier ending.

The National Institute for Health and Care Excellence (NICE) announced on 20th September 2017 that it is planning a full update of its guideline on the diagnosis and management of CFS/ME. ME Research UK is delighted with this news because we (and many other ME organisations) have real concerns about the usefulness of the guideline in its current form.

NICE first published Clinical Guideline CG53 on the diagnosis and management of CFS/ME in August 2007, prompting an energetic critical response from patient support groups and ME/CFS charities, including ME Research UK. NICE’s clinical guidelines are important because they influence national care and government policy in the UK. Ten years later, the controversy shows no signs of fading, and those same groups were in action once again when NICE recently considered updating the guideline to reflect new evidence.

You can read the content of CG53 for yourself and make up your own mind, but we and many others involved in ME/CFS have long questioned its value to patients. This is largely due to the fact that the guideline’s main treatment recommendations are for psychosocial management and coping strategies such as cognitive behavioural therapy (CBT) and graded exercise therapy (GET), which surveys show are either ineffective or inappropriate for most ME patients.

These recommendations are based on evidence from only a few randomized controlled trials, which included relatively small numbers of patients, and reported only mild to moderately positive results in many cases, and negative results in others. This is an insufficient evidence base on which to build a clinical recommendation, and contrasts particularly with the NICE guideline on multiple sclerosis which is based on evidence from many hundreds of trials. Several articles on our website discuss these concerns in more detail .

In the summer of 2017, NICE considered updating the clinical guideline on CFS/ME based on the publication of three reports in 2014 and 2015 that were thought to have potential implications to the recommendations. These were from the Agency for Healthcare Research and Quality, the Institute of Medicine, and the Department of Health & Human Services CFS Advisory Committee, all based in the USA.

Broadly speaking, the three reports discussed the current diagnostic criteria for ME/CFS, the strength of evidence for some available therapies, and the need for further research in a number of key areas. NICE concluded that, while these reports may have implications for the CFS/ME Guideline, the proposals were still at a preliminary stage and required validation, and it would therefore be ‘premature to update the guidance until there is a consensus in the UK and preferably internationally about the adoption of the proposed changes’.

As a stakeholder, ME Research UK was given the opportunity to comment on NICE’s decision not to update the guideline, and we did so, along with many other patient groups and ME/CFS charities. We restated our position that the main treatment recommendations of the 2007 NICE guideline are ineffective for most people with ME/CFS (in the case of CBT) or may be causing actual harm (in the case of GET), and reviews and surveys published in subsequent years have only reinforced this view.

According to NICE, of the 39 stakeholders that responded, most also did not agree with the decision not to update the guideline: ‘broader issues with the guideline were highlighted that called into question the guideline scope and its current relevance’. As well as new evidence concerning the efficacy of CBT and GET, other concerns raised included the fact that ‘severe ME is not well covered in the guideline’, diagnostic criteria are currently too broad and there is overlap with other conditions, and there are ‘issues around service delivery’.

Consequently, NICE made the following statement: ‘After further consideration of information from stakeholders including new evidence alongside the evidence identified through the surveillance review, NICE has decided to fully update the guideline with a modified scope.’

Welcome news indeed.