Occupational therapy and M.E.
This page offers guidance and resources for Occupational Therapists working with people with debilitating fatigue and post-exertional malaise as part of M.E./CFS and Long Covid.
For a diagnosis of M.E./CFS to be made, NICE guideline NG206 (section 1.2.2) states that four key symptoms must be present:
- Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
- Post-exertional malaise after activity in which the worsening of symptoms is often delayed in onset by hours or days; is disproportionate to the activity; and has a prolonged recovery time that may last hours, days, weeks or longer.
- Unrefreshing sleep or sleep disturbance (or both),
- Cognitive difficulties (sometimes described as "brain fog")
Post-exertional malaise is also experienced by an estimated half of people with Long Covid. This calls for healthcare professionals to take a different approach than offered to those with other health conditions.
Managing activity
For many types of health conditions, increasing activity and doing more can be beneficial but for those with post-exertional malaise this advice can be harmful. People with M.E. and Long Covid do not have the ability to recover from exertion so pushing through results in a loss of functionality, and an increase in other symptoms.
NICE guideline NG206 (section 1.11.10) advises: “Only consider a personalised physical activity or exercise programme for people with M.E./CFS who feel ready to progress their physical activity beyond their current activities of daily living.
It also says (section 1.11.11): “Tell people about the risks and benefits of physical activity and exercise programmes. Explain that some people with M.E./CFS have found that they can make their symptoms worse, for some people it makes no difference and others find them helpful.”
Learn about ME podcast and webinar
For our Learn About ME project, funded by the Scottish Government to inform professional practice in Scotland, Action for M.E., #MEAction Scotland and ME Association are working together to promote Dr Nina Muirhead’s free Learna module (worth one CPD point), and produce complementary podcasts and webinars.
Our Learn about ME and occupational therapy podcast features Katie Davies, Occupational Therapy Team Lead, NHS Grampian; and Corrine, a patient with Long Covid. They discuss how occupational therapy can support people living with Long Covid and M.E./CFS to pace their energy, taking a person-centred approach.
Our Learn about ME and occupational therapy webinar features Dr Jenny Preston, Consultant Occupational Therapist and Clinical Lead Neurological Rehabilitation, NHS Ayrshire & Arran; Katie Davies, Occupational Therapy Team Lead, NHS Grampian; Lisa Morton, Long Covid Practitioner, NHS Grampian; and Jill Stott, Occupational Therapist, NHS Grampian.
Jenny explains: “While this webinar focuses primarily on fatigue associated with long Covid and M.E./CFS, the information will be applicable to all types of fatigue, including neurological fatigue.”
Jenny and her colleagues discuss the misunderstanding around debilitating fatigue, how it can present, its true impact on people’s functionality and quality of life, and how occupational therapists can support people with ME/CFS and Long Covid. This includes tailoring their approach, making reasonable adjustments, and ensure that strategies are flexible with no set time scale. They also highlight how pacing and planning are extra activities and take energy on top of daily living activities; and the importance of ensuring time and space for good-quality rest.
Other useful resources for Occupational Therapists
Click on the links for:
- our functional ability scale, a tool to explore a person’s current level of ability and the level of severity of their symptoms
- our guide to pacing for people with M.E.
- Emily Collingridge’s valuable guide, Severe M.E. A Guide to Living
- #MEAction Scotland’s directory of resources for health professionals supporting people with M.E./CFS
- Long Covid Scotland’s directory of support groups, charities and other resources for people with Long Covid.
Looking for resources not listed here? Our Information & Support team may be able to help with signposting and support, including for your patients.
