Dialogues for a Neglected Illness - ME Film Series & Voices from the Shadows’
Resources for Clinicians & Others
Creators:
Natalie Boulton & Josh Biggs
Films
'Dialogues for a Neglected Illness' Film
Series
Purpose
These Wellcome-funded educational videos
explain ME, including Severe and Very Severe ME, using patient, carer, and
expert perspectives. They are widely used in medical education and carer
training.
Directed and produced by Natalie Boulton
and Josh Biggs.
A powerful 30-minute documentary that tells
the lived experience of people with severe ME, focusing particularly on
children and families. One of the first films to highlight the
reality of severe ME from patient and carer perspectives.
Screened internationally and remains a
significant educational and advocacy resource.
Two world renowned ME paediatricians, Prof
Peter Rowe and Dr Nigel Speight, discuss paediatric ME diagnosis, symptoms and management
in two short videos for medical professionals,
Carers of People with ME: 'Lost Voices
from a Hidden Illness'
Compiled by Natalie Boulton, ‘Lost Voices’
(2008) is a collection that highlights lived experiences of people with ME,
especially those severely affected. The book offers rare and powerful insight
into Severe ME through the voices of those living with Severe ME and the
parents who care for them.
An in-depth study of the book by Leonard
Jason identified key themes and along with quotes from parents of individuals
with Severe ME, reveal the complex and demanding role of carers supporting
people with Severe ME.
Together, these themes provide an honest
overview of the challenges, responsibilities, and emotional toll experienced by
carers.
We extend our sincere thanks to filmmakers Natalie Boulton, Josh Biggs, and all others who have contributed to the resources listed above. We are equally grateful to those who have shared insights from lived experience, including patients, carers, family members, friends, researchers, doctors, healthcare professionals, and scientists. Your generosity, time, and invaluable energy have made a profound difference, and we are deeply indebted to you.
If you have a medical card, you can get certain health services free of charge. Usually, your dependent spouse or partner and your children can also get the same range of health services for free.
A medical card is issued by the HSE.
Who can apply for a Medical Card?
An application for a medical card is means tested so it shouldn’t matter about the diagnosis. Many people with ME have had success in their application for a card.
Normally, your total household income is considered in the means test for the medical card.
To qualify for a medical card, your weekly income must be below a certain figure for your family size. Cash income, savings, investments, and property (except for your own home) are considered in the means test. Your household income after tax, PRSI (pay-related social insurance) will be assessed and the USC (Universal Social Charge) that has been deducted.
They will also look at expenses like:
• rent
• mortgage protection
• childcare
• mortgage • maintenance costs • house insurance • nursing home
• travel costs
If the figure obtained after your household income expenses are taken away is less than the qualifying income limits, you and your
family dependants will be sent a card. Qualifying income limits are financial
guidelines you would need to meet to qualify for a Medical Card or a GP Visit
Card.
You can find further details on qualifying income limits here
This is the quickest method of getting the card. But working on a hard copy may be easier. Alternatively, you can download a medical card application form, i.e., Medical Card MC1 Form here
Notes
It’s a slow process gathering all the information on expenses etc. Take your time!
You can include all medical expenses (GP & Consultants receipts) as well as prescription costs.
Get onto your healthcare professionals for receipts, or an account of your costs for attending appointments for the last few years if you don’t have them.
Your chemist can also give you a list of all your expenses for the last few years if you get onto them, if you’ve had regular prescription expenses. This can be much easier than gathering receipts you have kept and covers ones you haven’t kept.
This part of the work towards the application can be made easier by just making a few calls requesting those receipts or accounts of your consultations & prescriptions from GP, Consultants and Chemist. Most are helpful.
You could also include other expenses that are related to your ill health including costs of supplements and other tests/treatments/therapies.
Next, you photocopy all and send the copies with your med card application. Keep your originals in case you are asked for them later on. If you are asked for original documents at any stage remember to photocopy all for your own records.
Discretionary Medical Card
If your income is above the limit, you may still be able to get a medical card if your circumstances would result in financial hardship without one.
The application process for the discretionary medical card is the same as for the means tested medical card, but you should also include information about your family’s medical expenses in your application. These include:
attending your GP
medications or appliances
hospital treatment
Medical Report
Include a medical report if you want to be assessed for a discretionary medical card.
The HSE might write to ask you for a medical report if you have included medical bills in your application.
The medical report can include information from:
GP
Hospital consultant
Public health nurse
Social worker
Therapist
You, your carer or family members
A discretionary medical card gives you the same services as a means-tested medical card.
Discretionary medical cards are issued for a specific time
frame. The time frame will depend on your circumstances.
It may be helpful to include a personal letter with your supporting documents when applying for, or appealing a decision regarding, a Discretionary Medical Card.
In your letter, clearly outline your financial circumstances and provide as much relevant detail as possible, including:
Rent or mortgage repayments
General cost of living expenses
Disability-related costs (for example, mobility aids or home adaptation expenses)
Medical expenses, such as GP visits, private consultant fees, and other healthcare professionals
Travel costs (to medical appointments or other essential travel)
Prescription charges
Any additional financial commitments, such as loan repayments
Be sure to highlight your disposable income after rent/mortgage and essential expenses have been paid, as this will help demonstrate your overall financial position.
Emergency Medical Cards
An emergency medical card is a medical card you can get without a means test if you are in certain emergency situations.
You can get an emergency medical card if you:
Have a terminal illness and have been told you have 24 months or less to live or
Are receiving end-of-life treatment, or
Need urgent ongoing care and urgently need a medical card
Only a healthcare professional (for example, a doctor, consultant or social worker) can apply for an emergency medical card for you.
More details here (Citizens Information) and here (HSE)
GP Visit Card
If you do not qualify for a medical card on income grounds, you may qualify for a GP visit card.
You can apply online for a GP Visit Card hereThis is the quickest method of getting the card. But working on a hard copy may be easier; you can download a GP Visit Card application, i.e., MC1 Form here
Please see more information via this link including what documents you need to apply for a GP Visit Card.
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.
We are very aware of the significant challenges people living with ME, and particularly SevereME, 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).
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 transportfor 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.
Vantastic is a Not for Profit Irish Charity that offers accessible transport services to people with disabilities, citizens (65+) with mobility impairments and not for profit groups.
The Vantastic services originated from the total lack of accessible transport in the early 1990’s and the efforts made by the Centre for Independent Living Dublin to establish a transport division (called Vantastic) with the twin aims of providing an accessible transport service for people with disabilities and also to act as a policy lobby group on government.
To be eligible for the Vantastic Accessible Minibus Transport services you must become a member of Vantastic Minibus Service before using the service.
Membership is open to all people with permanent or temporary mobility difficulties, people with physical & sensory disabilities.
If you think you may be eligible for Vantastic Minibus membership complete the Online Membership
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 HSEsupports 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
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.
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
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.
Thanks to the individuals who have already contacted us with their feedback; your information is much appreciated.
Feedback
"For decades, I used the ‘Vantastic’ bus service from the Centre of Independent Living. It is an excellent safe wheelchair bus. It is by ‘travel-club’ payment, if you are able to pay, €30 a month, no matter how many trips.Even from Waterford to Cork, and back I only paid €40. I am not sure how many counties they operate in. They need a week or more advance notice. They have dropped me off or collected me from hospital, always making sure I was safe."
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.
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