NICE announce new publication date for the ME/CFS clinical guideline

March 30, 2021

Russell Fleming, Content Manager, ME Association 

Dear Stakeholder,  Because of the large number of comments received during consultation on the ME/CFS guideline, and the additional work needed to respond to them fully, the publication date has changed. The guideline will now publish on 18th August 2021.  

29 March 2021 

The ME Association was expecting NICE (The National Institute for Health and Care Excellence) to push back the publication date for the new ME/CFS clinical guideline.  

Updated leaflet summarising the main changes proposed in the new clinical guideline for ME/CFS

The announcement we received yesterday comes as no surprise but we had hoped the new guideline might have been published in early May so that we could have highlighted it during ME Awareness Week. 

Publication was originally expected by 21 April and this decision reflects the massive workload that the voluntary clinical guideline committee has had to tackle following the stakeholder consultation at the end of last year.  

There are over 230 stakeholders in the consultation process and while not all of them will have submitted feedback, a significant number have, and each response must be reviewed by the committee before final recommendations are made to NICE. 

The April publication date was always optimistic. The committee is comprised of clinical experts and patient representatives who contribute their time on a voluntary basis and the deadline was restrictive. This new deadline will allow the committee to properly review and to consider the feedback and make informed recommendations to NICE. 

The ME Association submission alone contained 171 comments relating to the main aspects of the draft. We highlighted 13 specific areas of concern or that were in need of improving, which included: 

  • Healthcare professional involvement 
  • Covid-19 and ME/CFS Clinical Vulnerability 
  • Guideline implementation 
  • Including an introduction and overview of ME/CFS 
  • Improving Box 1 – the symptoms suggestive of ME/CFS 
  • Including specifics relating to exclusionary testing and co-morbidities 
  • ME/CFS Specialist Services 
  • Home visits and appointments 
  • Hospital care 
  • Illness management 
  • Symptom management 
  • Psychological support 
  • Medical reviews 

For ME Awareness Week in May, the ME Association will still feature your stories of current health and social care, and we’ll be highlighting the draft NICE clinical guideline. 

It remains our hope that NHS and social care provision will be improved for everyone with the condition following publication of the guideline and the adoption of best practice in the years ahead. 

We will keep you informed of all developments that affect publication of this essential framework for health and social care.

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