Transportation - Attending Healthcare Appointments with Severe ME

  

We are very aware of the significant challenges people living with ME, and particularly Severe ME,  face when trying to attend healthcare appointments. 

For many, leaving their bedroom and home can trigger profound deterioration due to post-exertional malaise (PEM), sensory sensitivities, pain, orthostatic intolerance, and extreme mobility limitations. Even necessary medical care can come at a high physical cost.

At present, we are not aware of a dedicated or specialist transportation service in Ireland specifically for people living with Severe ME. However, we hope that the information below may offer some practical options that could help someone plan safely for a scheduled healthcare appointment. 

The suggestions below are simply based on the services we are aware of.

Speak with Your GP

For individuals who are bedbound or housebound due to Severe ME, we suggest clearly informing your GP that:

• You are bedbound due to Severe ME.

• You have significant mobility limitations.

• You experience immediate and severe post-exertional malaise (PEM) in response to exertion or stimuli.

• You have multiple sensitivities (light, sound, touch, movement).

• Attending appointments risks serious symptom worsening.

When arranging care or transport support, it can help to raise these questions directly:

• Can my appointment be done remotely (phone/video)?

• Can appointments be consolidated or rescheduled to minimise travel?

• Are there home‑visit options or outreach services?

• Can reasonable adjustments be made (e.g., quiet waiting areas, shorter visits)?

• Is specialist patient transport available (especially for severe cases)?

• Ask whether they can request non- emergency patient transport for your appointment (for example, for an MRI), including:

. Appropriate physical assistance
. Safe handling
. Support with stairs in your home
. Minimal waiting times where possible

 

Health Service Executive (HSE) Transport

The HSE provides non-emergency patient transport often free for people with a medical card or with a GP referral, to day hospitals, outpatient departments, and certain hospital services, depending on eligibility, criteria and location. Availability is not condition-specific.

You can:

• Contact the HSE directly: https://www2.hse.ie/contact/

• Ask your GP to contact them on your behalf.

Availability varies by area, so it is important to check locally.

Local Primary Care Office / Public Health Nurse

You can contact your local Primary Care Office by phone or email:
https://www2.hse.ie/services/primary-care-centres/

The local Public Health Nurse may be able to advise on or arrange support. You can contact them directly or ask your GP to assist.

 

Wheelchair Accessible Taxis

Some people may consider a wheelchair accessible vehicle (WAV), depending on their level of severity.

A county-by-county list of wheelchair accessible taxis is available through Transport for Ireland:

• Taxi Accessibility:
  https://www.transportforireland.ie/accessibility/taxi-accessibility/

• WAV Register:
  https://www.transportforireland.ie/getting-around/by-taxi/wheelchair-accessible-vehicle-wav-register/

• Taxi Information Line: 0818 064 000

For individuals who are less severely affected and able to sit upright for a journey, TFI Local Link may be an option:
https://www.transportforireland.ie/support/your-tfi-local-link-office/

 

Private Ambulance Services (Mayo Area)

Those living in Mayo may consider Murray Ambulance Service (private provider). They are based in Mayo and may serve surrounding counties.

Phone: 094 92 50 999
Website: https://www.murrayambulance.ie/

Private services may involve significant cost, so it is advisable to discuss requirements in detail beforehand.

Online/Over the Phone Appointments

Online or telephone-based appointments provide a vital alternative that improves access to care while minimizing physical strain.

Benefits:

Traveling to appointments can trigger symptom flare-ups. Online or telephone appointments remove the need for transport, long waits in busy environments, and physical exertion.

Patients can schedule appointments around their energy levels, choosing times when they are least symptomatic. This flexibility is particularly helpful for those with fluctuating symptoms and severities.

People who are housebound or bedbound can access medical care without leaving home. This is a significant improvement over traditional in-person consultations, which may otherwise be inaccessible.

Remote appointments ensure regular follow-ups and monitoring, which are crucial for managing chronic conditions like ME. This is especially valuable when travel or illness prevents in-person visits.

Practical Considerations

• Video appointments require a stable internet connection and a device with a camera and microphone. Telephone appointments need only a phone line. Some patients may need assistance setting up technology.

• Some examinations and diagnostic tests cannot be performed remotely. Clinicians may need to rely on patient-reported symptoms or schedule in-person tests selectively.

• Remote consultations can be more private, reducing stress from clinical environments.

• Patients can also remain in a comfortable setting, potentially improving communication and symptom reporting.

Tips for Patients

• Write down symptoms, medications, and questions beforehand to make the most of the time with the clinician.

• Minimize distractions and background noise during calls or video consultations to allow clear communication.

• If video calls are taxing, request telephone appointments. Some clinicians may provide shorter, staggered sessions if exhaustion, no energy and functional limitations are a barrier.

• Keep a written record of advice, prescriptions, or next steps discussed during the appointment, since remote interactions may feel less formal than in-person visits.

Healthcare systems should provide flexible options for consultations.

HSE Online Appointments

• The HSE supports the use of online health appointments across many hospital and community services, including follow‑ups, results reviews, and chronic disease management.

• These are conducted by your existing healthcare providers using video (and sometimes phone) calls so you don’t need to travel.

• Not all specialist services may offer telehealth, especially where physical examinations or tests are needed, so it’s worth asking your clinician whether an online appointment is suitable before booking

More here

Whether with the HSE or private providers:

• You book a time slot online or by phone with your GP/doctor.

• The GP/doctor contacts you via video or telephone at the agreed time.

• After consultation, you may receive prescriptions, sick certs, or referral letters digitally or by email. 

Further Information

 

Free Travel Scheme 

A Free Travel Pass has been expanded to include people who:

• Have never been able to drive due to a disability,

• Or are medically certified as unfit to drive for 12 months or longer.

• This means eligible individuals can travel free on state public transport (bus, rail, Local Link, Luas, and some private services).

• A doctor’s certification is required as part of the application process. 

 

More details here

Nice Guidelines NG206, 2021

The UK National Institute for Health and Care Excellence (NICE) guideline on ME/CFS (NG206, 2021) includes specific recommendations about access to care, which explicitly mention transport and physical accessibility. 

Key points from the guideline:

• Healthcare providers should take into account how far a person with ME/CFS has to travel, including transport and parking, when arranging and planning appointments.

• Timing, length, and frequency of appointments should be adapted to a person’s needs - this is to reduce the burden of travel and waiting.

• Alternative formats such as online consultations, telephone reviews, or home visits should be offered where appropriate to avoid unnecessary travel.

• People with ME/CFS should not be discharged from services if they cannot attend due to symptom flare‑ups, including travel‑related barriers. 

1.8 Access to care and support

1.8.1 Ensuring services are accessible

Health and social care organisations should make sure people with ME/CFS can use their services by:

• Adapting timing, length and frequency of all appointments to match the individual’s abilities and energy levels.

• Considering physical accessibility, including travel distance, transport options, parking and the exact location of appointment rooms.

• Taking into account sensitivities to light, sound, touch, pain, temperature extremes or smells.

• Providing care flexibly, such as through online or phone consultations, or by offering home visits where appropriate.

 

1.8.2 Managing missed appointments

 If a person with ME/CFS misses an appointment:

• Do not discharge them for non‑attendance; it may be due to symptom worsening. 

• Discuss the reason for the missed appointment and how the multidisciplinary team (MDT) can better support attendance in future. 

 

 

1.8.3 Recognising barriers to attendance 

Clinicians and service providers should be aware that people with ME/CFS are unlikely to be seen at their worst because:

•  debilitating symptoms or risk of worsening may prevent them from leaving home. 

• Cognitive difficulties may delay contact with services until the person feels able to explain their needs. 

1.8.4 Hospital Care

To improve access to inpatient and outpatient care for people with ME/CFS:

• Discuss with the person who needs inpatient care whether any environmental factors could cause problems during hospital care. 

• Consider room placement (e.g., a single room if possible), accessibility of toilets and washrooms, and environmental triggers such as lighting, sound, heating or smells. 

NICE Guidelines 2021

Reasonable Adjustments Information Pack

Information Pack: Supporting People with Severe ME in Hospital or Other Healthcare Setting by ME Advocates Ireland (MEAI) here

Further Resources

Hospital Transfer Notes 

Providing written Hospital Transfer Notes can help ambulance staff and hospital teams understand Severe ME and the risks involved. Clear written instructions may help reduce harm and prevent deterioration.

A template is available (this must be edited and completed by you or someone caring for you before use). See the template here

  

Hospital Transfer/Hospital Stay Notes Sample document here

Accessible Setting

It may be useful to explain the challenges you will face because of Severe ME before an appointment; please see link to Create an ME Accessible Healthcare Setting

The Gurney Guide for Severe ME Transportation 

This guide by Galen Warden, mum to person with severe ME is a US piece but has relevant sections here

 

 

We Would Appreciate Your Feedback

If you, or someone you care for, has specific experiences with transport services in Ireland for chronic illness/disability that safely supported attendance at a healthcare appointment while living with Severe ME, we would greatly appreciate hearing about it. 

Sharing lived experience may help others in similar situations.

We invite you to reach out to us privately, either by email at info@meadvocatesireland.com or via direct message (DM) on any of our social media pages. Your privacy is very important to us: all information you share will be handled with complete confidentiality, and anything we share will be fully anonymised.

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.