20 November 2020
Last week, the UK’s National Institute for Health and Care Excellence (NICE) published its long-awaited draft of the new ME/CFS clinical guidelines.
The process of developing these guidelines began in 2017 and the guidelines committee has been thorough in its work, undertaking public consultation and completing an extensive evidence review (more than 1000 pages of documents).
We think the draft guidelines represent a significant improvement in the care of ME/CFS patients in the UK and reflect a shift in attitude towards ME/CFS that is increasingly evident in many countries around the world.
Key takeaways from the draft NICE guidelines
No evidence-based treatments and rejection of pseudo-scientific treatments
The guidelines clearly state that there is no current treatment or cure for ME/CFS. This means that, under these guidelines, graded exercise therapy (GET) and cognitive behaviour therapy (CBT) are not considered treatments for the underlying condition or a cure for ME/CFS.
The guidelines also state that pseudo-scientific treatments such as the Lightning Process or Perrin Technique are not recommended for people with ME/CFS.
We believe that ME/CFS patients deserve effective treatments with a strong evidence base that demonstrates their efficacy. After reviewing the evidence, we’re pleased the committee rejected the pseudo-scientific treatments and acknowledged the unfortunate reality that there is currently no evidence-based treatment or cure for ME/CFS.
Stigma and disbelief acknowledged
The guidelines acknowledge that ME/CFS patients “may have experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness” and recommend that healthcare professionals take this into account when working with ME/CFS patients.
A clear move away from deconditioning as the cause of ME/CFS, and from GET and CBT as treatments
The guidelines state that exercise programs which assume that deconditioning is the cause of ME/CFS are not recommended. While the guidelines still contain recommendations for exercise, they specifically indicate that ME/CFS patients should not be offered “any therapy based on physical activity or exercise as a treatment or cure for ME/CFS”.
Similarly, CBT is recommended as a supportive therapy, not a treatment or cure for ME/CFS. The guidelines say that the form of CBT recommended “does not assume people have ‘abnormal’ illness beliefs and behaviours as an underlying cause of their ME/CFS”.
This represents a strong and welcome move away from the long-standing ‘psychosocial model’ of ME/CFS which assumed that patients feel fatigued because of an irrational fear of exercise exacerbated by muscle de-conditioning through inactivity. We know from biomedical research that this old fashioned model or explanation for the disease is clearly incorrect.
Energy management and remaining within the energy envelope
Although exercise is still recommended in the guidelines, the emphasis is on patients remaining within their energy envelope in whatever activity they undertake. This is important and will help to ensure that patients are safe.
The guidelines use the phrase “energy management” to describe pacing. We think this new phrase makes it clear that the purpose of pacing is to manage and conserve energy rather than to eventually lead to increased activity.
Leaving behind “malaise” and “fatigue”
The guidelines have dropped the phrases “post-exertional malaise” and “post-exertional fatigue”, and use “post-exertional symptom exacerbation” to describe this key symptom of ME/CFS.
The words “malaise” and “fatigue” have been problematic because they’re vague and don’t convey the complexity of what happens to patients after exertion. We think the new phrase is a clear improvement.
Specific recommendations for young people and people with severe illness
We’re pleased to see that these two often overlooked patient groups have specific recommendations in the guidelines to address their needs.
What does this mean for Australia?
While Australia has its own ME/CFS guidelines and doesn’t officially use the NICE guidelines, the combination of our guidelines being out of date (published in 2002) and NICE guidelines generally being well-regarded in Australia means that organisations like the National Disability Insurance Agency and National Health and Medical Research Council have been turning to the NICE ME/CFS guidelines.
If these changes are adopted in the final version of the NICE guidelines they will enable patients applying for the National Disability Insurance Scheme to argue that GET and CBT are inappropriate treatments for ME/CFS. They will also help us lobby the Royal Australian College of General Practitioners to move away from the deconditioning model in its ME/CFS guidelines, and make it easier for the new Australian guidelines (when they are developed) to drop the psychosocial model of ME/CFS.
Read the draft guidelines here: https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline
Have your say
The draft guidelines are open for public consultation until 22 December. UK’s Action for ME has set up an online survey for anyone who would like to have their say on the new guidelines here: https://www.surveymonkey.co.uk/r/NICE-MECFS