The National Institute for Health and Care Excellence (NICE) have produced a long-awaited revision of their guidance: “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management”.
This guidance document was made public in November with the invitation to review and comment before 22 December 2020. The final publication date is estimated to be April 2021.
Physios for ME have spent a long time reviewing and discussing these guidelines and we have now submitted our response to NICE. Our comments are primarily focussed on our key area of interest in relation to ME; physiotherapy management. We therefore made the decision not to invite the wider ME community to contribute to our own response, but we were aware of several major ME charities providing opportunities for people with ME to contribute to this process, which we wholly supported.
Our views and recommendations are based on the current available evidence base, as well as the valuable insight we have gained from engaging with people with ME, and we’d like to once again extend our thanks to everyone who has worked with us and shared their story since we formed in June 2019.
Our review document can be read in full here:
As this is a long and detailed document, we also thought it would be helpful to summarise our key impressions and recommendations.
Overall, we are pleased with the tone and content of the Draft Guideline.
The headline from our perspective was that NICE are now advising against the use of structured exercise programmes (including graded exercise)and that exercise programmes should not be offered as a treatment or a cure.
We were not surprised to note that NICE found the quality of evidence of the clinical effectiveness of graded exercise therapy ranged from low to very low.
Other areas we were particularly pleased to see were:
· Emphasis on more regular monitoring of people with ME, and that someone should not be discharged due to missing an appointment (a practice we have heard many anecdotal examples of).
· The detail around severe ME including recommendations for practitioners to risk assess each interaction and to provide home visits (although we added that we think every person with ME should be offered home visits).
Areas of concern
Although the general reception of the guidelines was positive, we still felt there were many revisions required.
Progressing or incorporating physical activity
We were especially concerned with two bullet points, which were in relation to referring people with ME to specialist services if they;
• are ready to progress their physical activity beyond their current activities of daily living
• would like to incorporate a physical activity programme into the management of their ME/CFS
To suggest someone will be “ready to progress” their physical activity could provide impetus to instigate a progressive exercise programme. The terminology also suggests a person can achieve increased physical activity when “ready” and leaves open interpretation as to who can make this judgement, without any guidance on how or on what basis.
To suggest that a physical management programme could be part of the management of ME also contradicts the guideline’s recommendation not to offer any therapy based on physical activity or exercise.
Our suggested wording was to refer someone to a specialist service if they “require support with activity and energy management planning”.
Later on in the document there is an entire section about “physical activity”, including instructions on how to establish a physical activity baseline and use flexible increments while increasing activity. We felt this section was a close description of an exercise programme that is gradually increased, which could easily be misconstrued as graded exercise therapy.
“Physical activity”, as defined by the guidance document, is “any bodily movement produced by skeletal muscles that results in energy expenditure.” This therefore includes a wide range of activities, both general activities of daily living as well as any kind of physical activity that a person may wish to pursue within the confines of their energy envelope, without triggering Post Exertional Symptom Exacerbation (the terminology given to “Post Exertional Malaise” in the NICE guidance document).
We felt therefore that the management of physical activity should not be a distinct section in the guidelines, as it may lead to the assumption that “physical activity” is a suitable treatment approach. We suggested that physical activity should be included within the section on energy management planning.
We were also keen to highlight that practitioners needed to be able to measure a person’s tolerance of any activity, in order to avoid post exertional symptom exacerbation.
We made the recommended wording: “Only consider physical activity for people with ME/CFS as part of a maintenance plan for activity and energy management to support activities of daily living. The means to measure post exertional symptom exacerbation must be put in place prior to any new activity being introduced, and if progression is considered then monitoring is essential to avoid exceeding the anaerobic threshold and associated post exertional symptom exacerbation.”
The guideline makes reference to physical activity being overseen by a physiotherapist or occupational therapist “with training and expertise in ME/CFS.”
We already know that ME is included in less than half of undergraduate physiotherapy courses, and we are aware of existing training programmes that are based on the deconditioning model and include graded exercise therapy.
We therefore made the recommendation to be more specific in this regard:
“Any physical activity within an activity management plan should be overseen by a physiotherapist or occupational therapist who has undertaken current, evidence-based training in exercise physiology relating to ME/CFS and can evidence their continuing professional development within this speciality. An awareness of the abnormally lowered anaerobic threshold, lowered VO2 max, increased acidosis post-exercise and their implications are essential.
Training should reflect the low to very low quality of evidence relating to GET and the additional recent evidence related to adverse physiological responses to exertion and the implications for this on activity management planning.”
We feel that these revised guidelines will have a significant impact on the clinical practice of physiotherapists, with the move away from exercise-based treatments. Given the sparsity of training and education for undergraduate and post-graduate physiotherapists, it will be a challenge to effectively communicate these changes across the profession and make changes to established physiotherapy services.
We therefore finished our response with an offer to provide help and support in training physiotherapists and communicating the changes in clinical practice to our peers.
Our document has now been submitted to NICE and we will await the completed guidelines in Spring 2021. We will be updating our website information accordingly and planning a communication strategy to make sure the physiotherapy profession is widely aware of the upcoming changes.