Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis and Management.
NICE pauses publication of updated guideline on diagnosis and management of ME/CFS.
NICE has today (17 August 2021) taken the decision to pause publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
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.
Because of issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps. We will hold conversations with professional and patient stakeholder groups to do this. We need to do this so that the guideline is supported.
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
August 17, 2021
Statement on the delay to publication of the NICE Guidelines on diagnosis and management of ME - On Behalf of: Forward ME, Action for ME, ME Association, Doctors for ME, ME Research UK.
We are shocked and hugely disappointed to hear that the long-awaited NICE guidelines have been unexpectedly delayed at the last minute.
The new NICE guidelines bring clinical practice up to date with current scientific knowledge regarding ME**. Delays will hold-off still further the desperately needed improvements to patient care.
Many medical professionals, researchers and patient representatives have spent 3 years diligently reviewing and assessing the evidence.
The document has been approved by the committee and should be published.
The document removes support for therapies driven by outdated views regarding treatment for ME which are no longer supported by the science. We understand these new guidelines may take time to become accepted by elements of the medical community, but they should not be delayed.
No minority party should be able to undermine the careful scientific consensus established by the NICE committee and the rigorous work that has been undertaken in good faith.
We urge NICE to publish this important work without delay, so doctors can get on and support patients with this often devastating disease.
Ms Nina Muirhead, head of medical education, Doctors for ME said:
“Doctors are in desperate need of improved support in how to care for patients, delaying that prolongs unscientific approaches which have no place in our medical community”.
Sonya Chowdhury of Action for ME said:
“We are in the dark about this. The NICE committee has worked hard to produce balanced guidelines which reflect science and best medical practise. Nobody should be able to undermine that.”
**also known as Chronic fatigue syndrome
The above statement relates to this announcement from NICE this afternoon (17 August).
The new NICE guideline on ME/CFS was due to be published tomorrow (18th August 2021)
‘Expert reaction' issued by the Science Media Centre UK this evening:
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.”
"M.E. Charities baffled by delay to NICE Guideline" on Action for ME’s website.
"NICE Guideline - 11th hour delay" on ME Research UK’s website
"Fury as NICE cancels publication of finalised ME/CFS Guideline" on MEAction website.
• Action for ME • Forward ME • #MEAction
• M.E. Association • N.I.C.E.