Occupational Therapy Care - Working Safely with People with Myalgic Encephalomyelitis (ME)
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Referral to an Occupational Therapist or Physiotherapist is recommended for safety & equipment needs.
Notes for Occupational Therapists (OTs)
This information provides occupational therapists (OTs) with an essential understanding of the pathophysiology of Myalgic Encephalomyelitis (ME) and practical strategies to support safe and effective patient care.
Myalgic Encephalomyelitis (ME) is a disabling, severe, life-altering neurological disease that affects multiple body systems, including the nervous, immune, cardiac, metabolic, and musculoskeletal systems.
Key feature:
Post-Exertional Neuroimmune Exhaustion (PENE) – also referred to as post-exertional malaise (PEM) – in which symptoms worsen following physical, cognitive, emotional, or sensory exertion. Symptom flare-ups may last days, weeks, or longer. The intensity and duration of PENE are often disproportionate and unpredictable relative to the trigger.
Other key features include profound exhaustion; pain; unrefreshing sleep and sleep dysfunction; joint stiffness; temperature dysregulation; neurological impairments; and endocrine, autonomic nervous system, and immune disturbances, including but not limited to orthostatic intolerance. These symptoms have a direct and significant impact on occupational performance, activity tolerance, sensory processing, and cognitive functioning.
Individuals with ME experience multiple concurrent symptoms, with symptom presentation and disease severity fluctuating unpredictably from day to day, week to week, month to month, year to year, and even decade to decade. Symptom patterns and functional capacity vary between individuals.
Functional severity ranges from mild limitations in daily activities to being housebound or bedbound. For individuals with mild ME, participation in daily activities may exceed energy limits and trigger PENE. For those who are more severely affected, even basic activities of daily living, attempts at communication, or minimal physical, cognitive, or sensory stimulation may be sufficient to trigger PENE, often resulting in a prolonged reduction in functional capacity.
NB: It is essential for professionals to familiarise themselves with Severe ME before working with patients at this level of severity.
Severe /Very Severe ME
The clinical presentation of severe or very severe ME includes the features seen in those with milder disease, but some features are more prevalent, and all are much more extreme. The severe or very severe patient is already in continuous PENE and cannot tolerate further stimulation. It is dangerous if the patient is forced to exceed their exhausted energy reserves.
- Profound weakness. May be unable to move or turn over in bed, eat, get to the toilet, etc.
- Reduced or lack of ability to speak or swallow.
- Severe and often almost constant, widespread pain, severe headaches, and hyperesthesia.
- Extreme intolerance to small amounts of physical, mental, emotional, or orthostatic stressors such as sitting, bathing, toileting, eating, speaking. These can immediately trigger post-exertional malaise and increased weakness.
- Hypersensitivities, sometimes extreme, to light, sound, touch, chemicals, or odours. Exposure can increase pain and other symptoms.
- Severe cognitive impairment that may impede the patient’s ability to communicate and understand spoken or written materials.
- Severe gastrointestinal disturbances (e.g., nausea, abdominal pain) and food intolerances which can impair adequate nutrition.
- Severe chewing and swallowing issues which can impair adequate nutrition.
- Orthostatic intolerance severe enough to prevent upright posture.
- Sleep dysfunction such as unrefreshing sleep, shifted sleep cycles, and fractured sleep.
- Increased prevalence of comorbidities common to ME (e.g., postural orthostatic tachycardia syndrome) and/or complications of being homebound or confined to bed (e.g., osteoporosis, constipation, pressure ulcers, aspiration pneumonia, and deconditioning). These can increase disease burden and complicate management.
Alongside profound physical impairment, be aware people with ME, especially individulals with severe or very severe ME, are frequently socially isolated, due to difficulty in accessing the community, at times even cut off from family and friends, They may have experienced previous trauma and stigma, misunderstanding and poor interactions with healthcare professionals.
ME and Severe ME patients include adults, and children or young adults.
ME and Severe ME affects both males and females, and people of all ages.
Key Principles for OT Practice with ME Patients
1. Respect Exertion Limits
People with ME experience Post-Exertional Neuroimmune Exhaustion (PENE) - any physical, cognitive, emotional, or sensory activity beyond their individual limits can trigger severe symptom worsening lasting days, weeks, or longer.
·
Assess
the patient’s energy capacity before any activity.
·
Avoid
exceeding safe limits; overexertion can lead to prolonged or permanent
deterioration.
·
Encourage
frequent rest and pacing.
·
For
people with severe or very severe ME, there may be no safe threshold for additional
stimulation; even minimal sensory input may contribute to deterioration.
2. Individualised Assessment
Every patient’s ME presentation is unique. Symptoms vary in type, severity, and day-to-day fluctuation.·
Evaluate
exhaustion, cognition, mobility, pain, sensory sensitivities, and orthostatic
tolerance.
·
Support
activities of daily living (ADLs), e.g., dressing, cooking, personal care, with
adaptations as needed.
3. Environmental and Activity Adaptations
Modify the patient’s environment to reduce physical and cognitive strain
·
Reduce
sensory overload (dim lighting, minimize noise).
·
Break
tasks into short, manageable steps.
·
Provide
assistive devices where appropriate.
4. Energy Conservation & Pacing
·
Teach
energy envelope management: balancing activity with rest.
· Prioritise essential tasks and postpone non-urgent activities.
5. Cognitive Support
·
Simplify
instructions and use visual aids or written schedules where tolerated.
·
Provide
low-stimulation environments to support concentration.
6. Safety First
·
Monitor
orthostatic intolerance e.g., dizziness, fainting, tachycardia.
·
Avoid
activities that exceed safe physical, cognitive, or sensory limits.
7. Patient-Centred Goals
·
Focus
on maintaining function and quality of life, not on increasing activity.
·
Goals
should be realistic, flexible, and responsive to day-to-day fluctuations.
8. Collaboration and Education
·
Collaborate
with medical teams, physiotherapists, carers, and family members.
·
Educate
patients and carers about pacing, energy management, and safe activity limits.
·
Advocate
for appropriate workplace, educational, or home accommodations.
Essential Practice Considerations for Severe ME
· Risk-assess each interaction in advance to ensure potential benefits outweigh risks.
· Establish patient preferences regarding timing, format of assessment, communication methods, and the presence of carers or support people.
· Use short, clear instructions, and avoid prolonged conversation.
· Prioritise essential questions only.
· Allow the patient to communicate at their own pace.
· Validate symptoms and lived experiences.
· Work closely with carers and family members.
Please see more essential information for OTs re Severe ME:
o
https://www.oneagleswings.me.uk/wp-content/uploads/2026/01/JW-OT.pdf
Key Takeaways
-
ME is a multi-system neurological disease.
OT care must focus on energy preservation, safety, and basic functional support while strictly avoiding interventions that risk post-exertional deterioration.
-
OT care must prioritise patient safety, energy management, and symptom avoidance especially in cases of Severe/Very Severe ME.
-
Individualised, paced, and supported approaches help patients in the lower severity ranges maintain independence and quality of life.
Resources for People Living with ME
- Leaflet:Occupational Therapy guide for Myalgic Encephalomyelitis (ME) (Jenny Wilson) provides OTs with an essential understanding of the pathophysiology of Severe ME and practical strategies to support safe and effective patient care here
- Leaflet: Occupational Therapist Guide: Supporting People with Myalgic Encephalomyelitis (ME) (ME Advocates Ireland) provides OTs with care notes about preventing harm and supporting patients through careful adaptation here
You can give either of the leaflets above to an OT who is assessing you, or the person you care for, ahead of meeting the OT
- Occupational Therapy Guide for Myalgic Encephalomyelitis (ME) (Jenny Wilson) provides OTs with an essential understanding of the pathophysiology of Severe ME and practical strategies to support safe and effective patient care here
- Occupational Therapist Guide: Supporting People with Myalgic Encephalomyelitis (ME) (ME Advocates Ireland) provides OTs with care notes about preventing harm and supporting patients through careful adaptation here
Note: These quick-reference leaflets are for guidance only. Always consider the individual needs, limitations, and safety of each patient when planning interventions.
Disability & Functional Capacity Tools
Additional Resources
Film Dialogues for ME/CFS includes two short videos about PEM (15 mins, 6 mins), accompanied by links to educational materials and references here
Energy Managing Guide: Occupational therapy advice for managing energy by Royal College of Occupational Therapists (UK) includes an Energy Managing Guide here
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