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NICE have released an updated draft guideline for the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
Prof Simon Carding, Group Leader in gut microbes in health and disease, Quadram Institute Bioscience, said:
“Patients will welcome the acknowledgement from NICE that deleterious therapies that may harm patients, such as GET, are the wrong path to take and that high quality biomedical research is required to overcome the lack of treatments for this devastating disease. At Quadram Institute we are pursuing a strategy of gaining scientific evidence/data and trialling possible treatment for a subgroup of ME patients. Working with European UK and collaborators and patients we hope we can provide more evidence for the next NICE review.”
Prof Michael Sharpe, Professor of Psychological Medicine, University of Oxford, said:
“As the NICE report says, it is paramount that patients are listened to and their symptoms and concerns taken seriously. It is also essential that evidence-based rehabilitative treatments (graded activity/exercise and cognitive behaviour therapy) are given only to those patients who want them and then given in a personalized expert fashion in partnership with them. It is to be hoped that these new guidelines improve the quality of delivery of these treatments. It is also to be hoped that the strongly stated concerns about the effect of badly delivered treatments, do not make it even harder for patients to access the well delivered, evidence-based treatments.”
Prof Trudie Chalder, Professor of Cognitive Behavioural Psychotherapy, Institute of Psychiatry Psychology & Neuroscience (IoPPN), King’s College London, said:
“Cognitive behaviour therapy (CBT) and graded exercise therapy (GET ) are evidence-based treatments for chronic fatigue syndrome (CFS) in that they facilitate reductions in fatigue and improve people’s quality of life if delivered by a qualified therapist. Previous reviews of the science provide the evidence. Our clinics are full of patients who are very keen to receive these evidence-based treatments and our patient reported outcomes support their use. My concerns are a) that patients should be offered these treatments to avoid a situation in which their condition stays the same or worsens b) that health professionals will stop offering evidence-based treatments.”
Dr Alastair Miller, Deputy Medical Director at the Joint Royal Colleges of Physicians Training Board (JRCPTB), said:
“As a consultant physician in general medicine and infectious diseases who has been caring for patients with CFS since the early 90s I found the previous NICE guidelines extremely useful in confirming the role of cognitive behaviour therapy (CBT) and graded exercise therapy (GET) as evidence based useful therapies. We had previously followed their general principles in all the clinical settings where I had worked and it was very helpful to have the NICE guidelines available to support our approach. Not everyone improved with the advised approach but most did seem to have some benefit and in the absence of any other reasonable approach and no pharmacologic intervention, many of my patients seem to have benefitted over the years from CBT and GET. I am aware that there has been controversy over these approaches but there has never been any evidence of harm and they remain the only evidence based treatment approach in CFS. It is therefore extremely disappointing that NICE has chosen to exclude them from the updated guidelines and I certainly have concerns that this omission is based more on political pressure than good science. It will certainly deny many of our patients access to the therapies that offer their best chance of recovery.”
Prof Sir Simon Wessely, Regius Chair of Psychiatry, King’s College London, said:
“As someone who has been treating patients with ME/CFS for over 30 years, I am in no doubt of the importance of continuing to treat CFS patients with empathy and respect, and offering individualised patient centred care. This was in the previous NICE guidelines in 2007, and it is depressing that this still needs to be said today. If even one patient feels that they are not been taking seriously, there is more work to be done. 13 years ago there were only two treatments with clinical trial support, namely graded exercise therapy (GET) or cognitive behavioural therapy (CBT), and that has not changed over the years. In the new guidelines NICE has again emphasised that these approaches should not be fixed or set in stone, which is already the case for those few centres with proper supervision and expert leadership that do provide such services at present. Such services will agree that “unstructured exercise that is not part of a supervised programme” should be avoided. There is a lot of helpful detail as to how such programmes should be implemented, but still some odd inconsistencies. Finally, sufferers should rightly beware any claims of miracle cures from any quarter, but be reassured that existing programmes that take a cautious, collaborative, clinically supervised approach, backed by evidence from randomised controlled trials, the gold standard of assessing effectiveness, offer some hope of meaningful improvement in what remains a complex, little understood and still sometimes misunderstood condition.”
Prof Peter White, Emeritus Professor of Psychological Medicine, Queen Mary University of London, said:
“NICE is usually commended by being led by the science. It is therefore a great surprise that this guideline proscribes or qualifies treatments for CFS/ME for which there is the best evidence of efficacy, namely graded exercise therapy (GET) and cognitive behaviour therapy.
“It is also remarkable that the committee use the symptom of post-exertional fatigue as a reason for not providing GET, when the largest ever trial of GET showed that it significantly reduced this symptom more than staying within one’s energy envelope. Should this guideline be adopted as suggested, I fear that it will discourage healthcare professionals from offering the two treatments that give patients the best chance to safely improve their health.”
Draft guideline for ‘Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management’ was published by NICE at 00:01 UK time on Tuesday 10 November.
Declared interests
Prof Michael Sharpe: “Principal investigator on the PACE trial of treatment for CFS/ME.”
Prof Trudie Chalder: “Prof Chalder is a principal investigator on the PACE trial. Prof Chalder is an author of self-help books on CFS.”
Dr Alastair Miller: “Alastair Miller 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 Simon Wessely: “Professor Wessely was a Co Investigator in several trials of one of the therapies included in the NICE report, cognitive behaviour therapy (CBT), and has being seeing patients with ME/CFS in the NHS for over 30 years.”
Prof Peter White: “PDW has led or co-led several trials of behavioural interventions for patients with chronic fatigue syndrome, including the trial he has quoted. He is a member of the Independent Medical Experts Group, which advises the UK Ministry of Defence about its Armed Forces Compensation Scheme, and provides consultancy for the re-insurance company Swiss Re.”
None others received.