The National Institute for Health and Care Excellence (NICE) have announced today that they have decided to pause publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
Dr Alastair Miller, Consultant Physician in Infectious Disease and Internal Medicine, said:
“The draft guidelines were predicted to stop the use of GET and limit the use of CBT which have served most CFS/ME clinicians and patients well for many years and were endorsed by the NICE guidelines in 2007. Most NHS clinicians use GET and CBT and have done so for a long time.
“Since the NICE guidelines of 2007 further trials have supported the use of CBT and GET and the National Outcomes Database that collects data from most NHS CFS/ME clinics has shown generally good outcomes from this approach.
“The three NHS clinicians who resigned from the guidelines group all lead or have led major NHS CFS services and if they were not prepared to sign up to the new proposed guidelines it is difficult to imagine that any NHS clinician would be.
“Importantly, without CBT and GET, there is nothing. No new therapies or approaches have emerged since 2007 (so in practice one needs to question whether there was ever a requirement to have a new guideline).
“If the professional bodies that represent those who care for these individuals were not prepared to support the guideline, this may have made NICE think again.
“It is difficult to say where we go from here. There are some amongst the charities and patient groups that are utterly opposed to CBT and GET and so compromise and consensus may be difficult to achieve.”
Prof Chris Ponting, Principal Investigator at the MRC Human Genetics Unit, Institute of Genetics and Cancer, University of Edinburgh, said:
“The new guidelines should receive support from both professionals and patients alike. NICE took due care and attention developing these guidelines in a process lasting 4 years. It applied rigorous methodology, for which it is world-renowned, and recruited highly regarded professionals and lay people to the review panel. Consensus decisions were taken by the panel for a much improved set of guidelines. It would be understandable if implementation of the completed guidelines takes additional time to put new practice in place.”
Prof Trudie Chalder, Professor of Cognitive Behavioural Psychotherapy, Institute of Psychiatry Psychology & Neuroscience (IoPPN), King’s College London, said:
“NICE making the decision to pause the release of the guidelines for chronic fatigue syndrome was the right thing to do. The messages were confused and clinicians would not have had clarity on evidence based best practice.”
The Royal College of Paediatrics and Child Health (RCPCH), said:
“We are very pleased that this process has been paused and we look forward to working with NICE to ensure that future guidance is of benefit to children, young people and those who manage their care.”
Dr Alastair Miller: “Alastair Miller is an Infectious Disease Consultant Physician who was Clinical Lead at the Royal Liverpool University Hospital CFS service from 2006-2014. He was Principal Medical Adviser for Action for ME from 2010 till 2016 and chaired the British Association for CFS and ME (BACME) 2013 till 2016 (having previously been deputy chair from 2010). He acted as a reviewer of serious adverse events on the PACE trial and was a member of the trial steering committee for the GETSET trial.”
Prof Chris Ponting: Investigator, DecodeME study in which people with ME/CFS and their carers are involved.
Prof Trudie Chalder: “Prof Chalder is a principal investigator on the PACE trial. Prof Chalder is an author of self-help books on CFS. Prof Chalder has conducted workshops on CBT for CFS for which she has received payment. I am the director of the persistent physical symptom service at South London and Maudsley NHS trust. I recently published papers on patient reported outcomes related to CBT and GET.