Do no harm: supporting people with ME/CFS

There are over 400,000 people in the UK with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) who physiotherapists could work with in areas including acute care, MSK and paediatrics. All require specialist advice and support that does not cause harm. 

The Department of Health’s Delivery Plan for ME/CFS, published last year, had a clear aim that people with this condition ‘feel safe and supported by services and professionals in line with other long-term health conditions.’ 

‘Feeling safe’ is an unusual statement in a delivery plan, yet in a 2019 survey of people with ME/CFS, conducted by Physios for ME with the ME Association, over 50 per cent of respondents stated physiotherapy made their symptoms worse. How and why could this be the case?

The Workwell Foundation in the USA developed a two-day cardiopulmonary exercise test which showed that by the second day people with ME/CFS demonstrated significant deterioration in their oxygen consumption and a reduced anaerobic threshold compared to healthy people. 

We have found that some people appear to be pushing their metabolism to the limit even in everyday activity.

This helps to explain the main symptom of ME/CFS, post-exertional malaise (PEM). Any activity that uses energy can cause PEM. There can be over 30 symptoms of PEM and people with ME/CFS usually experience PEM up to 24 to 48 hours after the activity. Called a crash, they can last days, weeks or months; some people never recover. 

Physiotherapists must understand ME/CFS so they can provide support that is safe and does not produce PEM. Application of graded exercise therapy (GET), for example, is contraindicated in ME/CFS and could cause significant harm. Recently, the Department of Health produced a comprehensive e-learning module, based on the revised NICE guideline, which:
 

• highlights the variability in patient experiences and the impact on individuals and their families.
• emphasises the importance of listening to the patient and taking an individualised approach.
• encourages the adoption of a multidisciplinary approach to patient care.
• highlights the importance of pacing, symptom management, and supportive networks.

The module provides a comprehensive introduction to ME/CFS and offers specific guidance for all healthcare practitioners, including those working in the community, who might have to support people with severe or very severe ME/CFS.

For example, a person with ME/CFS, attending rehabilitation for anterior knee pain, is a complex clinical picture. The overarching goal is functional recovery from the anterior knee pain without destabilising the person’s ME/CFS. That may mean a longer timeline, and physiotherapists need to:

• Listen to the person with ME/CFS to determine what they can and can’t do.
• Gather information ahead of the appointment so that cognitive challenges are reduced.
• Consider shorter and less frequent sessions, with adequate recovery days built in.
• Consider the impact of noise and light on the person with ME/CFS during the appointment.
• Consider allowing them to lie down during the session to avoid any orthostatic intolerances, which are very common with people with ME/CFS.
• Monitor the person’s response to your treatment: did they crash afterwards?
• Use symptom-contingent pacing over progression.
• Use the 3Ps – pacing, prioritisation and planning.
• Use heart rate monitoring to monitor their symptoms and avoid triggering PEM.
• Use energy envelope management.
• Ensure that rest is a significant part of the programme.

Physiotherapists require confidence in both musculoskeletal practice and an understanding of ME/CFS as a complex, fluctuating, neurological condition. We all have a duty of care to educate ourselves to provide safe physiotherapy that does no harm.