This site is intended for health professionals only


NICE pauses publication of ‘unsupported’ chronic fatigue guideline


chronic fatigue syndrome


NICE has paused the publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS), it has announced.

It said there were ‘strong views’ around the management of the condition and that it had halted publication of the guideline because it was not ‘supported by all’.

In a press statement published yesterday, NICE said it had decided to ‘take time to consider next steps’ due to ‘issues raised’ with the final guideline during the pre-publication period.

It said: ‘The guideline recognises that ME/CFS is a complex, multi-system, chronic medical condition where there is no “one size fits all” approach to managing symptoms. 

‘The causes of ME/CFS are still poorly understood and because of this there are strong views around the management of this debilitating condition.’

The statement added: ‘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.’

It has been reported that several members of the guideline committee left the group last month, while various patient groups and charities have criticised the delay.

Sian Leary, spokesperson for #MEAction UK, said: ‘At a time when NICE needs to show strength, and to back their own independent processes, they have instead shown a depressing level of weakness. They are capitulating to the vested interests of those who support graded exercise therapy, instead of standing up for the thousands of people being harmed.’

NICE thanked those who had contributed ‘diligently’ to the halted chronic fatigue guideline and pledged to hold ‘conversations’ with professional and patient stakeholder groups to rally support.

However, it added that ‘in order to have the desired impact, the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved’.

The Royal College of Paediatrics and Child Health (RCPCH), said it was ‘very pleased’ that the process had been paused. 

It added: ‘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.’

It comes as long Covid is still affecting about a million people in the UK, with the number of patients living with symptoms – of which the most common is fatigue – for many months on the rise.

NHS England announced in June that GPs will soon be able to refer children and young people to new long Covid clinics as the specialist services are expanded.

READERS' COMMENTS [6]

Patrufini Duffy 18 August, 2021 2:45 pm

Like the ME spokesperson says : “depressing level of weakness”. I wonder what the insurance premium levy will (inevitably), yes, will be on a coded history of ME? We’ll soon find out.

David Jarvis 18 August, 2021 5:50 pm

Do other disease groups have a say on treatment. Some discussion on hypertension levels to treat. Set it higher because of travel insurance premiums. Seems daft to me.

Reply moderated
Paul Cundy 18 August, 2021 8:38 pm

Dear All,
Err so NICE that would appear to be the nub “to bring together the -available evidence- and the -real, lived experience and testimony of people- “. Have you not yet discovered that there is a difference between real objective evidence and lived experiences? Lived experiences are subjective, non objective and often lies. “No doctor i don’t eat anything my BMI just happens to be 45”, “I’ve been forced to come to A/E because my GP had no appointments”, “the dog ate my prescription”. Understand this, there is evidence and there is perception. Guidelines where subjective perception are allowed in the mix will always be worthless; as have 75% of your guidelines aimed at general practice. CFS is as much a state of mind as any other condition and allowing those with that altered state of mind to define best treatment is nothing short of allowing an altered state of mind to enter the decision making arena.
Regards
Paul Cundy
GMC 2582641

Reply moderated
James Weems 18 August, 2021 8:45 pm

What harms does graded exercise therapy cause? Genuinely interested. I recognise it’s a difficult condition to treat and is often something we find hard to manage in primary care in the long term.

David Mummery 19 August, 2021 1:05 pm

There are a lot of parallels with Long Covid – the culprit is the immune system ( as well a fibromyalgia and PTSD). Massive over-reaction of the immune system causes neuro-inflammation, dysregulation of the HPA axis and dysautonomia, as well as chronic pain. The symptoms are often relapsing/remitting. The concept of ‘central sensitisation’ is key. As there is no ‘test’ for it ( although there are brain changes on PET scans) , it relies on subjective experience and symptoms to guide management strategies which inevitably makes it complex

Monica Stevens 25 August, 2021 8:52 am

A lot of the symptoms of Long Covid seem to be due to overactivation of the sympathetic nervous system so there are known strategies that might help.