WAMES response to draft NICE ME/CFS guideline

This week WAMES sent in our response to the ME/CFS guideline consultation. Thanks to all who sent us their comments on the guideline and to those who have shared their stories and experiences with us over the last few years. They were a big help in shaping our response.

There was much in the guideline to be pleased about and we are grateful to those on the guideline committee, and to those who supplied evidence to the committee. The guideline included annexes and was accompanied by 13 other documents, so there was a lot to read and absorb in the 6 week consultation period! Inevitably we will not have picked up all the issues that needed to be addressed, but hopefully, in combination with other patient groups’ responses, our comments will have represented people in Wales and will make a difference.

Here are some of the key strengths and weaknesses we found in the draft guideline:

Strengths

the description of ME/CFS is recognisable to people with the condition!
acknowledges the significant impact ME/CFS has on quality of life of families affected
describes the additional symptoms and experiences of severe ME/CFS and the adjustments needed to provide appropriate care
acknowledges that more than 1 member of a family can have ME/CFS (though this could be highlighted better)
makes many recommendations based on experience and consensus, when research evidence is unavailable
includes recommendations for key areas of research
acknowledges the widespread misunderstanding about the illness, and the prejudice, disbelief and stigmatisation many with ME/CFS have experienced
focuses on management of the condition and acknowledges there is no cure yet
acknowledges the potential harm of inflexible exercise therapy
recommends the ‘energy envelope’ approach to energy management (but doesn’t mention pacing!)
uses the term ‘Post-exertional symptom exacerbation’ (not post-exertional malaise) to illustrate the impact of activity on all symptoms
uses the term fatigability instead of tiredness and chronic fatigue (though we have questioned the spelling) which we believe is less likely to be viewed as everyday tiredness, though still doesn’t emphasis the degree of weakness people experience
recommends each person with ME/CFS is given help to develop a management plan
highlights the need for advice to be given to support people in employment and education
recommends each ME/CFS person has a named person to coordinate care and management plan
highlights the need to include sufficient appropriate physical movement in the management plan to avoid developing other serious health issues
acknowledges that some people with ME/CFS will need aids and adjustments (though more information should be given and clarification that it is not just the severely affected whose health would benefit
highlights the need to have a plan to manage flares and relapses (flares might be a new concept for many)
highlights the need for regular monitoring and reviews
highlights the need for training of health and social care professionals

Weaknesses

the reasons for the changes in definitions and treatment recommendations is not clarified, so the anti-biomedical bias of the BioPsychoSocial theory of ME/CFS is not made apparent
there is not enough guidance given to doctors to make a diagnosis, exclude other conditions and be made aware of common co-existing conditions
acknowledges the sensitivity of many people with ME/CFS to drugs, but gives no guidance on which might be helpful
no mention has been made of the links to the post viral experience
there is not enough additional information about ME/CFS in children and young people
it is not clear which of the legal documents mentioned are for England only. No Welsh legislation is included which could make implementation of some aspects of the guideline harder in Wales
talks about unrefreshing sleep, instead of the broader term of sleep disturbance, and the importance of not restricting the amount time spent sleeping, particularly in the early days, is not highlighted
the guidance on safeguarding is not clear enough to avoid all cases of inappropriate abuse investigations
acknowledges the need for social care which understands ME/CFS, but gives little guidance about how this can be achieved
the recommendation for a diagnosis to be given in primary care, then a referral to be made to a specialist team for a fuller assessment and management advice has a number of problems and would be particularly difficult to implement in Wales
no guidance is given about the inappropriateness of placing ME/CFS teams in mental health or pain services
the section on psychological support is unhelpful. Only CBT is mentioned and the version described aims to help people manage ME/CFS symptoms, not emotional distress and anxiety, which we do not believe is the role of the psychologist

You can read the draft guideline here

Read excerpts in this blog, starting with NICE says no to Graded Exercise Therapy!

The final guideline should be published in April 2021