The decision to delay publication has been backed by two royal colleges – but was condemned by an ME charity.
NICE said it had decided to delay publication of updated advice on ME/CFS ‘because of issues raised during the pre-publication period with the final guideline’.
The institute said the update ‘recognises that ME/CFS is a complex, multi-system, chronic medical condition where there is no one-size-fits-all approach to managing symptoms’, but acknowledged that because ‘the causes of ME/CFS are still poorly understood’ there were ‘strong views around the management of this debilitating condition’.
NICE advice delayed
A statement from NICE 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.
‘We want to thank everyone who has contributed to this guideline and particularly the committee and the patient groups who have worked so diligently. However, unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need.
‘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.’
Charity ME Action said there was ‘widespread anger in the ME community’ following the decision to delay publication of the updated advice.
ME Action spokesperson Sian Leary said: ‘At a time when NICE needs to show strength and 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.’
The charity said that NICE advice to date has recommended graded exercise therapy, but that ‘people with ME have consistently reported they deteriorate following this approach’. The charity said draft advice published in November 2020 ‘found significant evidence demonstrating that people with ME were being harmed by graded exercise therapy, and therefore recommended against this therapy’.
The Royal College of Physicians (RCP) welcomed the delay. RCP president Dr Andrew Goddard said: ‘We were extremely concerned that the final guidelines proposed by NICE may not have taken into consideration the extensive comments we made to the draft version, particularly in relation to treatments we know to have significantly benefited many patients.
‘There is reasonable evidence, for example, that graded exercise therapy helps a group of patients with ME/CFS and, while not without risk, our experts strongly support its ongoing use as an option in this condition.
‘Similarly, our experts would strongly recommend specialist individualised rehabilitation for patients with complex rehabilitation needs. We hope that in delaying the final publication of these guidelines, NICE will re-consider our evidence submitted and incorporate it into their final publication.’
A Royal College of Paediatrics and Child Health spokesperson 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.’