Northern Ireland
14.04.2025
Ahead of my trip to Northern Ireland to run Belfast Marathon, I interviewed Richard and Aileen who told me their stories of living with ME there.
I took ill end February 2023 with acute pneumonia – upright to paramedics in half an hour, no warning – which led to my left lung collapsing very quickly. It was this bacterial infection, that I never fully recovered from, that led to my diagnosis of ME in mid-2024, just after my 51st birthday.
Aileen:
I don’t know how I got ill or when it started. Looking back, I had symptoms of mild ME from a young age. I was diagnosed with chronic childhood migraines early. I was in a car crash at 8 and for years attributed pain and other issues to it or migraines. Growing up, I thought that the reason I was so fatigued at times was laziness - a teacher told me that I was lazy in primary school for resting my head on my arm on the desk. In my teenage years I dismissed many symptoms, or didn’t report at home I had went to the sick room and slept.
Hindsight is a great thing. Looking back, I had signs of hypermobility from a young age, fainting episodes that got worse with heat or standing – which was later diagnosed as POTS (Postural Orthostatic Tachycardia Syndrome). Pain and other issues were diagnosed as Fibromyalgia. I was living in a push crash cycle with ME long before a diagnosis was even made of it. It was a few years after diagnosis that I became aware that push crash cycles exist with ME and it was partly that which was worsening my health.
I have to say I’ve been lucky with my GP. I hadn’t been feeling well for months and was getting increasingly frustrated at not knowing why. I did my own research which led me towards chronic fatigue syndrome and my GP was thinking the same thing. She ran a series of tests and ultimately diagnosed ME by exclusion. Finding out it was ME was a massive relief, however that is also where the challenge began as I discovered how little most people know about the illness, so it feels like I am forever explaining to people what ME is and what it means to me.
On that, I have friends who understand better and can empathise with how I am and that is amazing – but the people that offer sympathy or a blithe “hope you get well soon” are of little interest to me.
Aileen:
It was very difficult to get diagnosed, many years living with symptoms dismissed or incorrectly attributed to something else. Tests come back normal and general practitioners haven’t been taught about ME within their medical degrees, so patients can spend years without answers. I was lucky to have a GP who did know enough about it to diagnose me in early 20’s.
Doctors haven’t been given an adequate picture of the disease to help with early and accurate diagnosis or assist in the management of health. Even with answers and a diagnosis in Northern Ireland, it’s hit or miss if you get a practitioner or professional with any awareness of how the disease impacts people and common co-morbidities. I have been lucky with some doctors, who have been often understanding and thorough despite a lack of awareness and education of the illness. Many medical professionals can be very dismissive of the disease with a poor, uninformed view that hasn’t evolved from perceptions in the 80’s.
Massively! Two days before I collapsed with pneumonia, I did my 13th marathon during training for two that I was planning in the spring – including Belfast. The following weekend, I could barely walk 2 lengths of the hospital ward before needing to rest. I very quickly accepted that pre-pneumonia Richard was no more.
I am now in a place where I can do 5-10K happily but going out to half marathon is a real challenge, and at a slower pace than before I was ill. My attitude is to try and see what I can do – I am always pushing to find my limits. This year, I am running one of the legs of the relay for the Belfast marathon with my running club, and I am totally OK with that. I would rather be able to do something and be happy at that, than do nothing at all because I can’t do what I used to – this is about mindset and choice. I know that some people would say that you should not exercise when you have ME, but for me it’s about balance about how much I do and how much I push myself. I know personally my mental health would suffer if I wasn’t able to exercise.
On a day-to-day basis, fatigue is forever present. I can sense fatigue from physical activities much better than from mental/cognitive, emotional and social activities, which seem to creep up on me. I am always looking out for the signs of PEM and live by the mantra “pace plan prioritise”. Everything I do needs to be planned for, and that includes dating – I am single and would ultimately like to meet someone, but that is not a priority just now.
Behind this is bad sleep, always waking tired, needing rest during the day, memory issues – brain fog can be horrific! Unless the cup of tea is in my sight, I am likely to forget to drink it. I have many minor symptoms that aren’t as impactful but can also be annoying, such as constant tinnitus.
My symptoms are mild to moderate, so I am in the 75% of the ME population. I say to people that there are 250,000 people in the UK with ME, each of whom has their own unique story about how the illness effects their life. Even though I am out and about, living as well as I can with ME, and look fit and healthy, it is an invisible illness that has a debilitating effect. I have good days, bad days, and both good and bad within the day.
Aileen:
I had an active childhood, enjoyed playing music, Irish dancing. There were signs of ME that I ignored or were incorrectly attributed to depression. In my very early 20’s I had been doing a degree, studying counselling and working within mental health. My health deteriorated after the birth of my first child and I became unable to work, socialise, study and became severely affected with ME. I’m bedbound and have been housebound for over 10 years.
I have found that this really depends on their experience either in training or in practice. I will always ask 3 questions – what do you know about ME, do you know anyone with ME, and can I tell you what living with ME means to me – to work out how best to talk to them.
Also have a north-south issue as I work in Dublin and must deal with medical teams there. Occupational health at work have been really good as they have helped me to understand how ME is perceived as well as diagnosed in the south, so that I can manage any difference in understanding accordingly.
Aileen:
Unfortunately many doctors in Northern Ireland still have no understanding of ME or common co-morbidities seen alongside it. Health authorities in Northern Ireland have no ME specialist, no ME clinics, no care pathway for severe ME. No multidisciplinary teams with an understanding of the complex nature of the disease and helping the 25% of patients who are housebound/bedbound.
In a post-Covid world where so many with long Covid now match diagnostic criteria for ME – that is terrifying.
With a disease having lower quality of life scores than many other serious illnesses – it is incomprehensible that so many patients are left without anything. There isn’t a multi disciplinary team involved. Professionals who are generally involved with severe ME; OT, district nursing, dietetics, physio – not all understand the illness or its limitations. Patients shouldn’t have to continually explain their illness. Care plans need to be made available for these patients with an educated and informed multidisciplinary approach to ensure illness is managed carefully and adequately without causing relapses or risking disease progression.
That’s a hard question. My GP after the diagnosis said it was down to me and self-management of symptoms.
Hence, I have had to work out what ME means to me, and have done a lot of research into the illness. I’ve also had to work out what fatigue vs tiredness means, also how to differentiate PEM from regular fatigue. For PEM I start using words like accumulated, overwhelming and disproportionate fatigue, and need to work out how to anticipate it. Again, this is my own interpretation of ME, knowing that it is unique.
Also, ME is also a cruel illness – every time I think I’ve learnt something about myself and living with ME, it proves that the symptoms are neither consistent nor predictable.
Early on, I was keen to meet people who looked and sounded like me, but that has been a struggle. Instead, I have met other people with ME through a local charity (Hope 4 ME) and also have realised that I have friends who have chronic illness and that has been a real support. Through these connections, I’ve realised I am not alone in how I feel. Saying that, I would like to meet more men with the illness.
Aileen:
I don’t receive adequate support, this has continually made the disease harder to manage and it’s decline harder to avoid. No professional involved with me has any training or knowledge of the illness.
I struggle with conversations and light, yet it’s expected I can manage visits and lengthy meetings, manage appointments and meet the needs of my sons alone. I can’t recover from one interaction to the next. With adequate support I could help manage my illness through careful pacing and have a better quality of life with my children.
The basics of Post Exertional Malaise and worsening of symptoms after minimal exertion aren’t understood amongst professionals. I lie in a darkened room and struggle with the light on for care calls and basic essential tasks. Interactions with professionals often leaves me unable to talk with my kids or function enough to eat. Like any ME patient- there is also then a delayed worsening of symptoms when PEM fully kicks in.
I need help with the most basic aspects of care; getting washed, bedding changed, being reminded to eat/drink and take medication.
Lack of adequate support and persistence in trying to do more than I can easily manage has left me confined to bed and unable to manage basic activities with my kids that we all used to enjoy eg playing uno, playing music or watching something together.
I can see the need for better education for Health Care Professionals, right the way from the universities through the GP surgeries and so on. Charities such as Hope 4 ME & Fibro can really help on this – not just to look at ME from a theoretical perspective, but also that we can use our lived experience to help their understanding of what it is like to live with the illness.
Stories are invaluable, not just from those patients with severe symptoms, but also from the 75% like me who are learning day by day how to live as well as we can with ME. I had the experience in hospital with the pneumonia that student doctors were being sent in to meet me and understand my case as it was unusual – that is something we could support to some degree, as a community of ME patients.
Aileen:
I would like to see compulsory training for ME and with in each Trust area for health and social care staff who deal with severe ME patients. There needs to be clear care pathway for severe ME patients in Northern Ireland with multi disciplinary teams who are fully trained and understand the complexities of this neurological disease and the common co morbidities they will undoubtedly see alongside it in their patients.
Northern Ireland needs to adopt and fully implement a clear framework for both the diagnositics and management of ME.
Within the last year I have again been advised that a neurorehabilitation unit and increased activity would be the only thing that would help me. This is against NICE guidance for good reason. Too many people have already suffered disastrous consequences from such harmful and outdated ‘advice’. Patients in the UK have died of malnutrition as a result of inadequate care and services.
In a disease where inaccurate, misleading advice or lack or understanding can cause catastrophic effects- something needs to change. I’m in a unique position where I have been involved with Hope 4 ME & Fibro N.I for over a decade and the wider severe ME community.
ME advocates in the past have been labelled as ‘militant patients groups’ merely for trying to prevent harm. Many of those advocates being housebound and bedbound ME patients who live daily with the harm which could have been prevented had they been told to learn about pacing and avoid over exertion rather than told and encouraged to push through.
Whilst there are no treatments for ME – that should never mean that ME isn’t treated with the knowledge we do have and compassion we should. When we know that knowledge is key, supporting patients to pace themselves & adapt activities according to the limitations of their illness is the only way currently to manage this illness. Any medical oaths to ‘first do no harm’ aren’t able to be upheld when the basics of the illness aren’t taught. Many professionals try to help, unaware their advice is counterproductive.
I am aware we don’t have an ME HCP specialist in Northern Ireland, and it will always be a challenge to have one being such a small nation of the UK, but there could be something done north-south across the island of Ireland to support the wider community. I am not sure if something is already being worked on there, but it does happen elsewhere in the healthcare system. I also think we continue to build awareness for our illness on the back of the increased number of people who have long covid induced ME, which gives us more of a voice and helps build awareness of the illness.
Aileen:
The future for ME sufferers is very uncertain in many ways and more complex than before with the addition of post viral complications. Not an outcome that anyone wanted but there are increasingly more who understand the illness, now unfortunately having long Covid induced ME themselves or having loved ones who do.
I have been fortunate enough to volunteer with Hope 4 ME & Fibro Northern Ireland for years. My son started his own ‘Help me to Help M.E’ campaign at 8 in primary school. He is now 18, planning for university and has seen no change within health authority provision for ME within that time. The charity has developed their own educational video and can offer CPD accredited training to professionals. Whilst the patients in Northern Ireland continue to wait for a consultant led service, the 8 year old has become an adult and now using the material to give ME presentations himself and help train my carers.
In the last decade the charity received the Queens Award for Voluntary Services. My colleague and friend Joan McParland also got an MBE for her contributions to ME patients in UK and Northern Ireland.
That is honestly where the majority of hope comes from for patients in Northern Ireland. A charity that is entirely run by volunteer patients and their families, has run yearly conferences with specialists from around the globe, now working with universities to provide training and awareness for medical students. If we could only see that effort matched by health authorities and statutory services the future for those with ME and long Covid induced ME would have a lot more hope.
- How did you get ill?
I took ill end February 2023 with acute pneumonia – upright to paramedics in half an hour, no warning – which led to my left lung collapsing very quickly. It was this bacterial infection, that I never fully recovered from, that led to my diagnosis of ME in mid-2024, just after my 51st birthday.
Aileen:
I don’t know how I got ill or when it started. Looking back, I had symptoms of mild ME from a young age. I was diagnosed with chronic childhood migraines early. I was in a car crash at 8 and for years attributed pain and other issues to it or migraines. Growing up, I thought that the reason I was so fatigued at times was laziness - a teacher told me that I was lazy in primary school for resting my head on my arm on the desk. In my teenage years I dismissed many symptoms, or didn’t report at home I had went to the sick room and slept.
Hindsight is a great thing. Looking back, I had signs of hypermobility from a young age, fainting episodes that got worse with heat or standing – which was later diagnosed as POTS (Postural Orthostatic Tachycardia Syndrome). Pain and other issues were diagnosed as Fibromyalgia. I was living in a push crash cycle with ME long before a diagnosis was even made of it. It was a few years after diagnosis that I became aware that push crash cycles exist with ME and it was partly that which was worsening my health.
- Has it been difficult to get diagnosed?
I have to say I’ve been lucky with my GP. I hadn’t been feeling well for months and was getting increasingly frustrated at not knowing why. I did my own research which led me towards chronic fatigue syndrome and my GP was thinking the same thing. She ran a series of tests and ultimately diagnosed ME by exclusion. Finding out it was ME was a massive relief, however that is also where the challenge began as I discovered how little most people know about the illness, so it feels like I am forever explaining to people what ME is and what it means to me.
On that, I have friends who understand better and can empathise with how I am and that is amazing – but the people that offer sympathy or a blithe “hope you get well soon” are of little interest to me.
Aileen:
It was very difficult to get diagnosed, many years living with symptoms dismissed or incorrectly attributed to something else. Tests come back normal and general practitioners haven’t been taught about ME within their medical degrees, so patients can spend years without answers. I was lucky to have a GP who did know enough about it to diagnose me in early 20’s.
Doctors haven’t been given an adequate picture of the disease to help with early and accurate diagnosis or assist in the management of health. Even with answers and a diagnosis in Northern Ireland, it’s hit or miss if you get a practitioner or professional with any awareness of how the disease impacts people and common co-morbidities. I have been lucky with some doctors, who have been often understanding and thorough despite a lack of awareness and education of the illness. Many medical professionals can be very dismissive of the disease with a poor, uninformed view that hasn’t evolved from perceptions in the 80’s.
- How does this disease affect you compared to your life previously?
Massively! Two days before I collapsed with pneumonia, I did my 13th marathon during training for two that I was planning in the spring – including Belfast. The following weekend, I could barely walk 2 lengths of the hospital ward before needing to rest. I very quickly accepted that pre-pneumonia Richard was no more.
I am now in a place where I can do 5-10K happily but going out to half marathon is a real challenge, and at a slower pace than before I was ill. My attitude is to try and see what I can do – I am always pushing to find my limits. This year, I am running one of the legs of the relay for the Belfast marathon with my running club, and I am totally OK with that. I would rather be able to do something and be happy at that, than do nothing at all because I can’t do what I used to – this is about mindset and choice. I know that some people would say that you should not exercise when you have ME, but for me it’s about balance about how much I do and how much I push myself. I know personally my mental health would suffer if I wasn’t able to exercise.
On a day-to-day basis, fatigue is forever present. I can sense fatigue from physical activities much better than from mental/cognitive, emotional and social activities, which seem to creep up on me. I am always looking out for the signs of PEM and live by the mantra “pace plan prioritise”. Everything I do needs to be planned for, and that includes dating – I am single and would ultimately like to meet someone, but that is not a priority just now.
Behind this is bad sleep, always waking tired, needing rest during the day, memory issues – brain fog can be horrific! Unless the cup of tea is in my sight, I am likely to forget to drink it. I have many minor symptoms that aren’t as impactful but can also be annoying, such as constant tinnitus.
My symptoms are mild to moderate, so I am in the 75% of the ME population. I say to people that there are 250,000 people in the UK with ME, each of whom has their own unique story about how the illness effects their life. Even though I am out and about, living as well as I can with ME, and look fit and healthy, it is an invisible illness that has a debilitating effect. I have good days, bad days, and both good and bad within the day.
Aileen:
I had an active childhood, enjoyed playing music, Irish dancing. There were signs of ME that I ignored or were incorrectly attributed to depression. In my very early 20’s I had been doing a degree, studying counselling and working within mental health. My health deteriorated after the birth of my first child and I became unable to work, socialise, study and became severely affected with ME. I’m bedbound and have been housebound for over 10 years.
- How do doctors and health authorities perceive ME/CFS in Northern Ireland?
I have found that this really depends on their experience either in training or in practice. I will always ask 3 questions – what do you know about ME, do you know anyone with ME, and can I tell you what living with ME means to me – to work out how best to talk to them.
Also have a north-south issue as I work in Dublin and must deal with medical teams there. Occupational health at work have been really good as they have helped me to understand how ME is perceived as well as diagnosed in the south, so that I can manage any difference in understanding accordingly.
Aileen:
Unfortunately many doctors in Northern Ireland still have no understanding of ME or common co-morbidities seen alongside it. Health authorities in Northern Ireland have no ME specialist, no ME clinics, no care pathway for severe ME. No multidisciplinary teams with an understanding of the complex nature of the disease and helping the 25% of patients who are housebound/bedbound.
In a post-Covid world where so many with long Covid now match diagnostic criteria for ME – that is terrifying.
With a disease having lower quality of life scores than many other serious illnesses – it is incomprehensible that so many patients are left without anything. There isn’t a multi disciplinary team involved. Professionals who are generally involved with severe ME; OT, district nursing, dietetics, physio – not all understand the illness or its limitations. Patients shouldn’t have to continually explain their illness. Care plans need to be made available for these patients with an educated and informed multidisciplinary approach to ensure illness is managed carefully and adequately without causing relapses or risking disease progression.
- Do you receive adequate support?
That’s a hard question. My GP after the diagnosis said it was down to me and self-management of symptoms.
Hence, I have had to work out what ME means to me, and have done a lot of research into the illness. I’ve also had to work out what fatigue vs tiredness means, also how to differentiate PEM from regular fatigue. For PEM I start using words like accumulated, overwhelming and disproportionate fatigue, and need to work out how to anticipate it. Again, this is my own interpretation of ME, knowing that it is unique.
Also, ME is also a cruel illness – every time I think I’ve learnt something about myself and living with ME, it proves that the symptoms are neither consistent nor predictable.
Early on, I was keen to meet people who looked and sounded like me, but that has been a struggle. Instead, I have met other people with ME through a local charity (Hope 4 ME) and also have realised that I have friends who have chronic illness and that has been a real support. Through these connections, I’ve realised I am not alone in how I feel. Saying that, I would like to meet more men with the illness.
Aileen:
I don’t receive adequate support, this has continually made the disease harder to manage and it’s decline harder to avoid. No professional involved with me has any training or knowledge of the illness.
I struggle with conversations and light, yet it’s expected I can manage visits and lengthy meetings, manage appointments and meet the needs of my sons alone. I can’t recover from one interaction to the next. With adequate support I could help manage my illness through careful pacing and have a better quality of life with my children.
The basics of Post Exertional Malaise and worsening of symptoms after minimal exertion aren’t understood amongst professionals. I lie in a darkened room and struggle with the light on for care calls and basic essential tasks. Interactions with professionals often leaves me unable to talk with my kids or function enough to eat. Like any ME patient- there is also then a delayed worsening of symptoms when PEM fully kicks in.
I need help with the most basic aspects of care; getting washed, bedding changed, being reminded to eat/drink and take medication.
Lack of adequate support and persistence in trying to do more than I can easily manage has left me confined to bed and unable to manage basic activities with my kids that we all used to enjoy eg playing uno, playing music or watching something together.
- What changes would you like to see to treatment or understanding of ME in Northern Ireland?
I can see the need for better education for Health Care Professionals, right the way from the universities through the GP surgeries and so on. Charities such as Hope 4 ME & Fibro can really help on this – not just to look at ME from a theoretical perspective, but also that we can use our lived experience to help their understanding of what it is like to live with the illness.
Stories are invaluable, not just from those patients with severe symptoms, but also from the 75% like me who are learning day by day how to live as well as we can with ME. I had the experience in hospital with the pneumonia that student doctors were being sent in to meet me and understand my case as it was unusual – that is something we could support to some degree, as a community of ME patients.
Aileen:
I would like to see compulsory training for ME and with in each Trust area for health and social care staff who deal with severe ME patients. There needs to be clear care pathway for severe ME patients in Northern Ireland with multi disciplinary teams who are fully trained and understand the complexities of this neurological disease and the common co morbidities they will undoubtedly see alongside it in their patients.
Northern Ireland needs to adopt and fully implement a clear framework for both the diagnositics and management of ME.
Within the last year I have again been advised that a neurorehabilitation unit and increased activity would be the only thing that would help me. This is against NICE guidance for good reason. Too many people have already suffered disastrous consequences from such harmful and outdated ‘advice’. Patients in the UK have died of malnutrition as a result of inadequate care and services.
In a disease where inaccurate, misleading advice or lack or understanding can cause catastrophic effects- something needs to change. I’m in a unique position where I have been involved with Hope 4 ME & Fibro N.I for over a decade and the wider severe ME community.
ME advocates in the past have been labelled as ‘militant patients groups’ merely for trying to prevent harm. Many of those advocates being housebound and bedbound ME patients who live daily with the harm which could have been prevented had they been told to learn about pacing and avoid over exertion rather than told and encouraged to push through.
Whilst there are no treatments for ME – that should never mean that ME isn’t treated with the knowledge we do have and compassion we should. When we know that knowledge is key, supporting patients to pace themselves & adapt activities according to the limitations of their illness is the only way currently to manage this illness. Any medical oaths to ‘first do no harm’ aren’t able to be upheld when the basics of the illness aren’t taught. Many professionals try to help, unaware their advice is counterproductive.
- What does the future look like for ME/CFS sufferers in Northern Ireland? Are there reasons to be positive?
I am aware we don’t have an ME HCP specialist in Northern Ireland, and it will always be a challenge to have one being such a small nation of the UK, but there could be something done north-south across the island of Ireland to support the wider community. I am not sure if something is already being worked on there, but it does happen elsewhere in the healthcare system. I also think we continue to build awareness for our illness on the back of the increased number of people who have long covid induced ME, which gives us more of a voice and helps build awareness of the illness.
Aileen:
The future for ME sufferers is very uncertain in many ways and more complex than before with the addition of post viral complications. Not an outcome that anyone wanted but there are increasingly more who understand the illness, now unfortunately having long Covid induced ME themselves or having loved ones who do.
I have been fortunate enough to volunteer with Hope 4 ME & Fibro Northern Ireland for years. My son started his own ‘Help me to Help M.E’ campaign at 8 in primary school. He is now 18, planning for university and has seen no change within health authority provision for ME within that time. The charity has developed their own educational video and can offer CPD accredited training to professionals. Whilst the patients in Northern Ireland continue to wait for a consultant led service, the 8 year old has become an adult and now using the material to give ME presentations himself and help train my carers.
In the last decade the charity received the Queens Award for Voluntary Services. My colleague and friend Joan McParland also got an MBE for her contributions to ME patients in UK and Northern Ireland.
That is honestly where the majority of hope comes from for patients in Northern Ireland. A charity that is entirely run by volunteer patients and their families, has run yearly conferences with specialists from around the globe, now working with universities to provide training and awareness for medical students. If we could only see that effort matched by health authorities and statutory services the future for those with ME and long Covid induced ME would have a lot more hope.