Occupational Therapy Care – Working Safely with People with Myalgic Encephalomyelitis (ME)

  

  

Occupational Therapy Care - Working Safely with People with Myalgic Encephalomyelitis (ME)

Notes for People Living with ME

Referral to an Occupational Therapist or Physiotherapist is recommended for safety & equipment needs.

For individuals with Severe ME, care interactions require particular sensitivity due to the potential for significant health impacts. A collaborative approach is encouraged, in which individuals are supported to participate in decisions about their care, including discussions around a clinician’s experience and knowledge of Severe ME, and awareness of associated risks.

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 known as post-exertional malaise, PEM) is defined by exertion intolerance, in which symptoms worsen following physical, cognitive, emotional, or sensory exertion. In ME, exertion intolerance is qualitatively and quantitatively different from normal fatigue: the intensity and duration of PENE are disproportionate to, and unpredictable in relation to the energy expended.

Symptom flare-ups may last days, weeks, or longer. Symptoms are not relieved by rest or sleep and are accompanied by multi-system dysfunction, including neurological, cognitive, cardiac, respiratory, gastrointestinal, and sensory manifestations.

Other key features include profound exhaustion; pain; joint stiffness; temperature dysregulation; unrefreshing sleep and sleep dysfunction; 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. Symptom patterns and functional capacity vary between individuals.

Functional severity in ME spans a wide spectrum, from mild limitations in daily activities to individuals who are housebound or confined to bed. For those with mild to moderate ME, participation in everyday activities may exceed available energy reserves and precipitate post-exertional neuroimmune exhaustion (PENE). 

In more severely affected individuals, even minimal demands such as attempts at communication or low levels of physical, cognitive, or sensory stimulation can be sufficient to trigger PENE, frequently leading to a prolonged and significant reduction in functional capacity.

NB: It is essential for healthcare professionals to familiarise themselves with Severe ME before meeting patients at this level of severity.

Severe and Very Severe ME presents with the features seen in milder disease, but some are more prevalent and all are much more extreme. Patients at this level are already in continuous PENE and cannot tolerate further stimulation. It is dangerous if the patient is forced to exceed their exhausted energy reserves. 

The presentation may include the following:

• 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 including perfumes and deodorants. 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.

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Alongside profound physical impairment, be aware that people with ME, especially individuals 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.

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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.

ME varies across defined severity levels - Mild, Moderate, Severe, Very Severe, and Profound ME - with increasing vulnerability and support needs at higher levels of severity. 

ME is a heterogeneous, fluctuating condition in which symptom type and severity may change daily or over longer periods, and functional capacity varies markedly between individuals.

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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.

·        Avoid wearing perfumed or fragranced products 

         (exposure can harm those with hypersensitivities)

4. Energy Conservation & Pacing

·        Teach energy envelope management: balancing activity with rest.

·        Prioritise essential tasks and postpone non-urgent activities.

·        Defer non-essential tasks.

5. Cognitive Support

·        Simplify instructions and use visual aids

·        Provide written or visual supports 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.

    ·  Avoid sensory overload. 

Environmental Precautions

Patients are already using their limited energy constantly, so please avoid unnecessary stimulation that could push them beyond their energy limits, as this can be harmful.

• Even minor noises can be harmful, so care should be taken to keep the environment as quiet as possible; avoid rustling or other sounds including those caused by personal protective equipment (PPE) or disposable protective coveralls.

• As lighting can be harmful if altered abruptly, it should remain at the level chosen by the patient or carer to prevent symptom triggers.

• An essential aspect of safe practice is avoiding perfumed or fragranced products, as fragrance exposure can be harmful and can act as a significant sensory trigger for people with ME, particularly those with complex hypersensitivities.

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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.

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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 Advocates Ireland-MEAI) provides OTs with care notes about safely supporting patients through careful adaptation here

• Leaflet: Visiting The Very Severe ME Patient: (Jenny Wilson) provides essential information about the impact on the functional status of the Severe ME patient  here

 

You can give any or all of the leaflets above to an OT who is going to assess you or the person you care for, ahead of meeting the OT. Email links to leaflets or print, and give to your OT.

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Resources for Occupational Therapists (OTs)

• Occupational Therapy Guide for Myalgic Encephalomyelitis (Jenny Wilson) provides OTs with an essential understanding of the pathophysiology of Severe ME and practical strategies to support safe and effective patient care.

• Occupational Therapist Guide: Supporting People with Myalgic Encephalomyelitis (ME Advocates Ireland-MEAI) provides OTs with care notes about safely supporting patients through careful adaptation.

• Visiting the Very Severe ME Patient (Jenny Wilson) provides essential information about the impact on the functional status of the Severe ME patient.
  

 

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

Bells Disability Scale (1994) - David S. Bell, M.D. here

Functional Ability Questionnaires: FUNCAP, 2025 - Kristian Sommerfelt & Trude Schei

A questionnaire about functional capacity - tools assessing functional consequences of activity rather than ability alone. Available in 55-item and 27-item versions here

Post-Exertional Malaise Questionnaire: (DSQ-PEM-2) - De Paul A questionnaire to assess and track exertion intolerance here

Functional Capacity Assessment for People with ME: a Guide for OTs - ME Group Australia (includes preparation, information gathering, report writing, and follow-up, webinar recording, and OT guides): here

Additional Resources

Film: Activity and Energy Management-Pacing (15 mins) - Dialogues for ME/CFS here

Films: Understanding Post-Exertional Malaise PEM  (15 mins), A Brief Guide to PEM (6 mins), accompanied by links to educational materials and references - Dialogues for ME/CFS here

Films: Severe & Very Severe ME/CFS (15 mins), Symptoms and Management of Severe/Very Severe ME/CFS (19 mins) -  Dialogues for ME/CFS here

Full set of films - Dialogues for ME/CFS here

Harms of Exercise:  Exercise and ME - Physios for ME (UK) here

Safe Practice Guidance for Physiotherapists: How to Work Safely with People who Have ME - Physios for ME (UK) here

Harms of GET Letter to Healthcare Providers: Opposition to Graded Exercise Therapy (GET) for ME/CFS, 2018 - Workwell Foundation here

Energy Managing Guide: Occupational Therapy advice for managing energy - Royal College of Occupational Therapists (UK) here

Notes on Severe ME: Severe ME Resources Modifications and Adaptions - Manitoba ME Support Group, an essential resource to truly understand the severities and debilities in Severe ME here

Guidelines

International Consensus Criteria for ME (adult & paediatric), 2011 - Carruthers et al here

International Consensus Primer for Medical Practitioners, (adult & paediatric), 2012 - Carruthers et al here

NICE Guideline NG206, 2021: Myalgic encephalomyelitis/chronic fatigue syndrome: diagnosis and management here

Research 

The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS); PLos One, 2015 - Hvidberg et al here

Medically Documenting Disability in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Cases, 2019 - Comerford and Podell here

Documenting Disability in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 2020 - Podell et al here

Living with myalgic encephalomyelitis/chronic fatigue syndrome: Experiences of occupational disruption for adults in Australia, 2021 - Bartlett et al here

Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome, 2011 - Goudsmit et al here

Assessing Functional Capacity in Myalgic Encephalopathy/Chronic Fatigue Syndrome: A Patient-Informed Questionnaire, 2024 (FUNCAP) - Sommerfelt et al here

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk.The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance. 

Welcome to New Followers - please see important information and resources

 

We have noticed that we have many new followers in the last few months; you are all very welcome.

Some followers may 

• be newly diagnosed
• have a diagnosis for some time
• suspect ME and haven’t received a diagnosis yet
• not have ruled out another condition

No matter what your background is we hope that we can help you in some way.

1. We are based in Ireland (Republic of Ireland). Please see the information and resources available via the link to our website. Information about PEM/PENE is particularly important, as it is the cardinal feature of ME.

Our website also provides detailed information on diagnosis and management, as well as extensive resources on severe ME, including guidance on caring for someone with severe, very severe, or profound ME. There are materials designed to help educate GPs and other healthcare professionals, practical tools for hospital or other care-setting admissions, information for carers regarding benefits, and guidance for individuals applying for welfare payments.

Many additional resources are available on our website, which is linked here:

http://meadvocatesireland.blogspot.com

2. Educational series of films, 'Dialogues' (UK), by Natalie Boulton and Josh Biggs, about ME and Severe ME via the link below. Films in the series which could be used alongside our own resources for self/others educational purposes include:

• Introduction to ME
• Understanding the atypical Post Exertional Response in ME (PEM/PENE)
• Activity & Energy Management - Pacing
• Severe & Very Severe ME
• Symptoms & Management of Very Severe ME
• Hospital Admission - issues & alternatives for severelyt ill patients
• Understanding the Harms of Graded Exercise (part 1 & 2)
• Patients Accounts of Key Symptoms

Other educational films in the series (re history, controversy & politics) 

• Prologue: A dangerous model abandoned as NICE seeks to reform care for ME patients in 2021
• The Tangled Story of ME

https://www.dialogues-mecfs.co.uk/videos/

3. Links to other informative pages

• The 'Stonebird' blog (Northern Ireland) by Greg Crowhurst is particularly focused on Severe/Very Severe ME and Caring for someone with Severe/Very Severe ME

https://www.stonebird.co.uk/ 

• The Nightingale Continuum (Canada) is an excellent facebook page by Wendy Boutillier that provides a lot of information about ME, Severe ME as well as posts about the history, controversy and politics behind ME

https://www.facebook.com/groups/1063785371126868

• ME International (US) is another voluntary group that provides many resources for patients and carers.  

 

https://me-international.org/ 

International Day of Persons with Disabilities December 3rd 2025

On this International Day of Persons with Disabilities, we highlight an often overlooked but profoundly disabling disease: Myalgic Encephalomyelitis (ME).

Recognising Myalgic Encephalomyelitis (ME) as a Disease With Serious Disabilities

ME is not a minor condition. It is a serious, complex neuroimmune disease that can cause substantial and severe disability.

Many people living with ME in Ireland experience:

• Reduced mobility or being house-bound/bed-bound

• Cognitive impairment (“brain fog”) that affects daily functioning

• Post-Exertional Response (PENE/PEM) where even minimal activity can trigger a worsening of symptoms

• Sensory sensitivities, pain, sleep dysfunction, and significant energy impairment

• Loss of independence and reduced ability to work, study, or participate in community life

Despite its disabling impact, people with ME often remain unrecognised and underserved within Ireland’s healthcare and disability support systems. This can result in inadequate care, delayed diagnosis, lack of accommodations, and barriers to essential services and social protection supports.

Today, we call for:

- Recognition of ME as a disease with serious associated disabilities

- Timely, accurate diagnosis and evidence-based management

- Improved access to disability supports and accommodations

- Greater awareness among healthcare professionals, policymakers, and the public

People with ME deserve the same respect, rights, and supports as all individuals living with disability in Ireland. On this International Day of Persons with Disabilities, we stand with the ME community.

#IDPWD