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NICE withdraws landmark ME/CFS guidance

18 August 2021

The National Institute for Health and Care Excellence (NICE) has withdrawn long-awaited landmark guidance on ME at the last minute after it came under pressure from medical groups.

Myalgic Encephalomyelitis (ME) also known as Chronic Fatigue Syndrome (CFS) is a hidden disability thought to affect over a quarter of a million people in the UK. The condition results in pain, brain fog, sensory overwhelm, and a persistent loss of energy, frequently resulting in patients needing to take to bed to rest for long periods. It is poorly understood, with no recognised cure, and with very little offered to patients in the way of treatment.

The guidance had been welcomed by patient groups and charities representing people with the condition, as it set out that the condition is a medical illness, and not a psychological problem, as some people believe. The guidance also withdrew support for Graded Exercise Therapy (GET) – one of the few interventions offered as a form of treatment. GET is in essence incrementally increased exercise, which many patients feel makes their impairments and energy levels worse, not better; and  withdrew support for Cognitive Behavioural Therapy (CBT), the psychological talking therapy which has also been offered as a treatment.

Some doctors and medical groups have argued that these two treatments are the only evidence-based ones for the condition, but patients and support groups fiercely criticise their use, citing lived experience, and opposing evidence that says that there is a poor quality clinical evidence base underlying results for GET for ME.

NICE said: “It has become apparent that a number of professional groups are unwilling to support the guidelines.”

A spokesperson for the Royal College of Paediatrics and Child Health said it was “very pleased” about the pause. They said: “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, a consultant physician in infectious disease and internal medicine and a former principal medical adviser for Action for ME, said: “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… 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.”

DR UK’s Media and Communications Manager Anna Morell said: “This is a significant, and much overlooked condition. As with other hidden disabilities, people with ME struggle to be heard and effectively diagnosed, and are too often disbelieved. The publication of this guidance has been delayed before due to the huge amount of comments received in response to the consultation. Dr Miller is right – there is nothing beyond CBT and GET. But to rely on them as curative, when the groundswell of evidence from patients points to the contrary, is as effective as the old medieval catch-all of prescribing a course of leeches.

“As long as there is a reluctance to fund and undertake proper, robust research into this debilitating condition, there will be no hope of finding effective treatments. The establishment also needs to listen to those who endure the symptoms of this condition day in, day out. They know what works for them and what doesn’t.

“The further delaying of this guidance is a suckerpunch to people who are already, quite literally, flat on our backs.”

A new date for the release of the guidance has yet to be set.