Physiotherapy and ME/CFS: towards a consensus?

Physiotherapists have a key role to play in supporting people with ME/CFS and implementing the most recent guidance from NICE. Peter Gladwell explains

Dr Peter Gladwell
Dr Peter Gladwell is a clinical specialist physiotherapist and service lead at the Bristol M.E. Service and a BACME board member

The British Association for Clinicians in ME/CFS (BACME) currently has 44 physiotherapy members out of over 200 members including medics, nurses, OTs, and psychologists. I have been a member for many years, and I’m currently the only BACME board member who is a physiotherapist: it has been an interesting role. 

Shortly after joining, I was involved in drafting the BACME position paper which clarified that BACME no longer supported Graded Exercise Therapy (GET) which was based on a deconditioning model of ME/CFS. BACME then contributed significantly to the revision process of the 2021 NICE Guideline for ME/CFS, welcomed its publication and are supporting its implementation. The arguments about GET have been divisive over many years, and it is refreshing to be moving forward with a broad consensus about the content of the new guideline. However, opinions take time to change and there are still a small number of vocal proponents of GET. 

It is refreshing to be moving forward with a broad consensus.

Where does this leave physio, and the role of exercise and physical activity? The 2021 Guideline identifies a strong role for physios with training and expertise to support people with ME/CFS to maintain mobility and to prevent deterioration. It suggests we think about including strategies to maintain joint mobility, muscle flexibility, balance, postural and positional support, muscle function, bone health and cardiovascular health in a care and support plan. This needs to be appropriate to the level of severity and may need to be carried out in small amounts, spread throughout the day. It also needs to respect the impact of post exertional malaise (PEM), to ensure that the levels of physical activity do not provoke a delayed increase in symptoms.

The guideline also includes advice that a physical activity or exercise program can be offered, if it is overseen by a physiotherapist in an ME/CFS specialist team. This includes a flexible approach, which establishes a baseline which does not provoke PEM. 

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