ICELAND
Ahead of my trip to Iceland to run Reykjavik Marathon, I was lucky to interview 2 people from the country who were happy to share their experiences.
Lilja: I got COVID-19 in January 2024 (for the third time) and developed pneumonia. I almost always get pneumonia whenever I catch a cold. I was off work for about two weeks before returning to my job. I have worked as a preschool teacher for the past 30 years, caring for children between the ages of one and two. In March of that same year, I began to notice that something was seriously wrong. I felt dizzy every single day and became increasingly unsteady on my feet. I even started stumbling while carrying children, which made me realize it was no longer safe for me to continue working. I decided to take about two weeks off from work, hoping that rest would help me recover. Instead, my condition continued to deteriorate, and now more than two years have passed.
After that, my symptoms became progressively worse day by day. I experienced an intense pressure in my head, especially behind my eyes. My eyelids became swollen with fluid, and by around 4:00 p.m. each day I could no longer open my left eye. I also had severe pain and pressure around my left ear. I became extremely sensitive to all forms of sensory stimulation. I could no longer watch television, read, or listen to conversations. Even speaking became difficult because my own voice echoed painfully inside my head. I was unable to walk without holding onto something for support, and on my worst days I literally had to crawl to the bathroom. For nine months, I was unable to communicate or interact with my family. I also developed visual disturbances. Most of my time was spent lying in bed, listening to life continue around me while I was unable to participate in it. It was heartbreaking to feel completely disconnected from the world around me. At the same time, it felt as though all the strength was draining from my body. Even the smallest movement left me utterly exhausted. The hardest part was that there was no treatment available to help me, and no one seemed to understand what was happening. I felt completely alone with an illness that no one could explain. Along with the intense pressure I constantly have in my head, I also get what feels like electric shocks on the right side of my head, starting at the back of my head (the occipital area), which feels like nerve pain. I experience a sudden electric shock, then everything goes black, and I either collapse or lose consciousness.
In February 2024, I booked a doctor's appointment and went armed with all the reasons why I thought ME/CFS could be what was going on with me. I was lucky in that this doctor really listened to me and when I told her that I had heard of a recently opened clinic in Akureyri dedicated to long Covid/MECFS, she immediately got to work writing a long referral letter to Friðbjörn Sigurðsson, the Head of said clinic. Early April I met with Friðbjörn and he confirmed the double diagnosis of Fibromyalgia and long-Covid. He also said I should consider going on sick leave as I was currently driving myself straight into the ground. 2.5 months later, another doctor put me on sick leave and I haven't been able to work since.
Lilja: Yes, it was incredibly difficult to get a diagnosis. I spent nine months going from one doctor to another, desperately searching for answers. First, I made an appointment with an ear, nose, and throat (ENT) specialist because I suspected that loose crystals in my inner ear might be causing my symptoms. However, the specialist ruled that out. I then visited my dentist, but I had no cavities or signs of infection. He referred me to an oral and maxillofacial surgeon, who fitted me with a custom night guard to wear while sleeping. The aim was to reduce teeth grinding and jaw clenching, which might have been contributing to the inflammation around my temples and the severe pressure I was experiencing behind my eyes and throughout my head. I also saw an ophthalmologist, but the examination showed that my eyes were completely normal. I then consulted a gynecologist because I wondered whether my symptoms could be related to hormonal changes or a hormone deficiency. However, all my hormone levels were normal.
For four months, I visited a chiropractor every day, hoping it would relieve the pressure in my head, but it made no difference. Eventually, I saw a neurologist, who told me that there was nothing wrong with me. Hearing those words completely broke me. I became so hopeless that I no longer wanted to live. The only thing all the doctors seemed to agree on was that I had severe muscle tension and inflammation in my neck and shoulders, and they believed that this was the cause of all my symptoms. However, any activity involving my hands or arms made me feel twice as ill, so I gradually became unable to do even the simplest daily tasks. I also attended physiotherapy twice a week for eleven months. No matter what my physiotherapist tried, my condition continued to worsen. She treated me with massage therapy, electrical stimulation, acupuncture, a massage gun, heat therapy, cold therapy, and shortwave therapy, but nothing helped. In fact, I consistently felt worse after every treatment.
Lilja: This illness has had a profound impact on my life and has changed everything for me. I have been unable to work for more than two years. For the first nine months, I was unable to do anything at home except lie in bed and listen to life passing me by. I have not been able to take care of or spend quality time with my children or my grandchildren. I have four children and four grandchildren, and not being able to be there for them has been one of the most heartbreaking consequences of this illness. For over two years, I have not been able to do anything that I enjoy. I couldn’t even go shopping because the sensory stimulation was simply too overwhelming.
I have been unable to exercise or take part in any physical activity because I suffered from severe dizziness and poor balance. I have watched my friends gradually drift away, and at times I feel as though I have been forgotten. One of the most difficult aspects of living with this illness is that it is invisible. Because there are no obvious outward signs that I am ill, many people struggle to understand just how profoundly it has affected my life.
Fanný: It differs wildly from one person to the next. There is slowly more understanding, but there's still a long way to go. I have been lucky in that I was taken seriously by the doctor who referred me to Akureyrarklínikin and again taken seriously by Friðbjörn. When I met him, the clinic was just beginning and there wasn't a long waiting list. In that I also have been lucky. Now there is a 4-6 months wait before getting an appointment with them. Most doctors I have met since getting diagnosed seem to have a defeatist approach. They don't know what can be done so they prescribe pain meds and anything they can think of to ease our struggles, but all they know is that the only thing that works is rest.
Lilja: Unfortunately, only a small number of doctors and other healthcare professionals seem to have a good understanding of ME. At least, that has been my experience. It is still a relatively new and poorly understood illness, and the lack of knowledge about it makes it extremely difficult for patients. I also believe that when doctors are unable to determine what is causing a patient’s symptoms, they should refer that person to a more specialized physician or consult with colleagues who have greater expertise, rather than leaving patients to struggle through the healthcare system while seriously ill. No one should have to spend months searching for answers while living with severe symptoms and pain that cannot be adequately relieved. In some cases, those delays may even shorten a person’s life because they are left without the diagnosis, treatment, or support they desperately need.
It turns out that a programme adapted to ME/CFS had been tested twice, but never implemented as a permanent option. I was sent home from the trial week, exhausted, overwhelmed and very disappointed to have been told they couldn't do anything for me. A few months later a documentary was released on Icelandic TV, in which Víðir Reynisson, former Chief of Police and fellow Covid long hauler, talked about all the good that came out of his stay in Reykjalundur with no mention that this was a one of (two of to be precise) opportunity and not a permanent option. Social support is again very hit or miss across the country and again I count myself as one of the lucky ones. The local Heilsugæsla (medical centre) has a wonderful social worker who took it upon herself to put in contact those of us in the community who are struggling with ME/CFS or long Covid. She organised the first few meetings, and then left us to keep the ball rolling. And we have. At least once a month, sometimes more, we meet for coffee and chat. It's priceless to share a space with people who truly understand.
Lilja: At first, I received very little understanding or support because no one knew what was causing my illness. I was repeatedly sent home from the hospital without any treatment or clear answers. My physiotherapist was the one person who truly recognized how seriously ill I was. She understood what I was going through, supported me during my worst periods, and consistently advocated for me when I was unable to advocate for myself. Over the past three months, however, I have finally felt that my doctor has been willing to explore every possible way to help me.
I was assigned a new primary care physician in February 2026, and he has been committed to finding ways to improve my condition—or at the very least, to make my symptoms and pain more manageable. For example, I was recently admitted to the hospital for three weeks, where the medical team focused on treating the inflammation throughout my body while also adjusting my medications to find the most effective combination. So now, for the first time since I became ill, I feel that I am receiving both understanding and support.
Lilja: I would like it to be easier for patients to access doctors and healthcare professionals who are knowledgeable about ME. It would also be valuable to be able to connect with other people living with ME. It would be helpful to know whether anyone else has the same symptoms, or whether there are treatments, medications, supplements, or strategies that others have found helpful and that might also help me. I would also be interested in sharing my own experience over the past three months, during which my condition has improved. I believe that new medications have been a major factor in that improvement, although it may also be the result of several things working together.
Lilja: I sincerely hope the future will be brighter for people living with ME. I also hope that more doctors will join Friðbjörn Sigurðsson’s team, as more and more people are being diagnosed with ME and Long COVID, and the waiting time for assessment has become very long. Because so few doctors specialize in this field or have it as a particular area of interest, there is unfortunately very limited follow-up care available for those who have been diagnosed.
July 2026
- How did you get ill?
Lilja: I got COVID-19 in January 2024 (for the third time) and developed pneumonia. I almost always get pneumonia whenever I catch a cold. I was off work for about two weeks before returning to my job. I have worked as a preschool teacher for the past 30 years, caring for children between the ages of one and two. In March of that same year, I began to notice that something was seriously wrong. I felt dizzy every single day and became increasingly unsteady on my feet. I even started stumbling while carrying children, which made me realize it was no longer safe for me to continue working. I decided to take about two weeks off from work, hoping that rest would help me recover. Instead, my condition continued to deteriorate, and now more than two years have passed.
After that, my symptoms became progressively worse day by day. I experienced an intense pressure in my head, especially behind my eyes. My eyelids became swollen with fluid, and by around 4:00 p.m. each day I could no longer open my left eye. I also had severe pain and pressure around my left ear. I became extremely sensitive to all forms of sensory stimulation. I could no longer watch television, read, or listen to conversations. Even speaking became difficult because my own voice echoed painfully inside my head. I was unable to walk without holding onto something for support, and on my worst days I literally had to crawl to the bathroom. For nine months, I was unable to communicate or interact with my family. I also developed visual disturbances. Most of my time was spent lying in bed, listening to life continue around me while I was unable to participate in it. It was heartbreaking to feel completely disconnected from the world around me. At the same time, it felt as though all the strength was draining from my body. Even the smallest movement left me utterly exhausted. The hardest part was that there was no treatment available to help me, and no one seemed to understand what was happening. I felt completely alone with an illness that no one could explain. Along with the intense pressure I constantly have in my head, I also get what feels like electric shocks on the right side of my head, starting at the back of my head (the occipital area), which feels like nerve pain. I experience a sudden electric shock, then everything goes black, and I either collapse or lose consciousness.
- Has it been difficult to get diagnosed?
In February 2024, I booked a doctor's appointment and went armed with all the reasons why I thought ME/CFS could be what was going on with me. I was lucky in that this doctor really listened to me and when I told her that I had heard of a recently opened clinic in Akureyri dedicated to long Covid/MECFS, she immediately got to work writing a long referral letter to Friðbjörn Sigurðsson, the Head of said clinic. Early April I met with Friðbjörn and he confirmed the double diagnosis of Fibromyalgia and long-Covid. He also said I should consider going on sick leave as I was currently driving myself straight into the ground. 2.5 months later, another doctor put me on sick leave and I haven't been able to work since.
Lilja: Yes, it was incredibly difficult to get a diagnosis. I spent nine months going from one doctor to another, desperately searching for answers. First, I made an appointment with an ear, nose, and throat (ENT) specialist because I suspected that loose crystals in my inner ear might be causing my symptoms. However, the specialist ruled that out. I then visited my dentist, but I had no cavities or signs of infection. He referred me to an oral and maxillofacial surgeon, who fitted me with a custom night guard to wear while sleeping. The aim was to reduce teeth grinding and jaw clenching, which might have been contributing to the inflammation around my temples and the severe pressure I was experiencing behind my eyes and throughout my head. I also saw an ophthalmologist, but the examination showed that my eyes were completely normal. I then consulted a gynecologist because I wondered whether my symptoms could be related to hormonal changes or a hormone deficiency. However, all my hormone levels were normal.
For four months, I visited a chiropractor every day, hoping it would relieve the pressure in my head, but it made no difference. Eventually, I saw a neurologist, who told me that there was nothing wrong with me. Hearing those words completely broke me. I became so hopeless that I no longer wanted to live. The only thing all the doctors seemed to agree on was that I had severe muscle tension and inflammation in my neck and shoulders, and they believed that this was the cause of all my symptoms. However, any activity involving my hands or arms made me feel twice as ill, so I gradually became unable to do even the simplest daily tasks. I also attended physiotherapy twice a week for eleven months. No matter what my physiotherapist tried, my condition continued to worsen. She treated me with massage therapy, electrical stimulation, acupuncture, a massage gun, heat therapy, cold therapy, and shortwave therapy, but nothing helped. In fact, I consistently felt worse after every treatment.
- How does this disease affect you compared to your life previously?
Lilja: This illness has had a profound impact on my life and has changed everything for me. I have been unable to work for more than two years. For the first nine months, I was unable to do anything at home except lie in bed and listen to life passing me by. I have not been able to take care of or spend quality time with my children or my grandchildren. I have four children and four grandchildren, and not being able to be there for them has been one of the most heartbreaking consequences of this illness. For over two years, I have not been able to do anything that I enjoy. I couldn’t even go shopping because the sensory stimulation was simply too overwhelming.
I have been unable to exercise or take part in any physical activity because I suffered from severe dizziness and poor balance. I have watched my friends gradually drift away, and at times I feel as though I have been forgotten. One of the most difficult aspects of living with this illness is that it is invisible. Because there are no obvious outward signs that I am ill, many people struggle to understand just how profoundly it has affected my life.
- How do doctors and health authorities perceive ME/CFS in Iceland?
Fanný: It differs wildly from one person to the next. There is slowly more understanding, but there's still a long way to go. I have been lucky in that I was taken seriously by the doctor who referred me to Akureyrarklínikin and again taken seriously by Friðbjörn. When I met him, the clinic was just beginning and there wasn't a long waiting list. In that I also have been lucky. Now there is a 4-6 months wait before getting an appointment with them. Most doctors I have met since getting diagnosed seem to have a defeatist approach. They don't know what can be done so they prescribe pain meds and anything they can think of to ease our struggles, but all they know is that the only thing that works is rest.
Lilja: Unfortunately, only a small number of doctors and other healthcare professionals seem to have a good understanding of ME. At least, that has been my experience. It is still a relatively new and poorly understood illness, and the lack of knowledge about it makes it extremely difficult for patients. I also believe that when doctors are unable to determine what is causing a patient’s symptoms, they should refer that person to a more specialized physician or consult with colleagues who have greater expertise, rather than leaving patients to struggle through the healthcare system while seriously ill. No one should have to spend months searching for answers while living with severe symptoms and pain that cannot be adequately relieved. In some cases, those delays may even shorten a person’s life because they are left without the diagnosis, treatment, or support they desperately need.
- Do you receive adequate support?
It turns out that a programme adapted to ME/CFS had been tested twice, but never implemented as a permanent option. I was sent home from the trial week, exhausted, overwhelmed and very disappointed to have been told they couldn't do anything for me. A few months later a documentary was released on Icelandic TV, in which Víðir Reynisson, former Chief of Police and fellow Covid long hauler, talked about all the good that came out of his stay in Reykjalundur with no mention that this was a one of (two of to be precise) opportunity and not a permanent option. Social support is again very hit or miss across the country and again I count myself as one of the lucky ones. The local Heilsugæsla (medical centre) has a wonderful social worker who took it upon herself to put in contact those of us in the community who are struggling with ME/CFS or long Covid. She organised the first few meetings, and then left us to keep the ball rolling. And we have. At least once a month, sometimes more, we meet for coffee and chat. It's priceless to share a space with people who truly understand.
Lilja: At first, I received very little understanding or support because no one knew what was causing my illness. I was repeatedly sent home from the hospital without any treatment or clear answers. My physiotherapist was the one person who truly recognized how seriously ill I was. She understood what I was going through, supported me during my worst periods, and consistently advocated for me when I was unable to advocate for myself. Over the past three months, however, I have finally felt that my doctor has been willing to explore every possible way to help me.
I was assigned a new primary care physician in February 2026, and he has been committed to finding ways to improve my condition—or at the very least, to make my symptoms and pain more manageable. For example, I was recently admitted to the hospital for three weeks, where the medical team focused on treating the inflammation throughout my body while also adjusting my medications to find the most effective combination. So now, for the first time since I became ill, I feel that I am receiving both understanding and support.
- What changes would you like to see to treatment or understanding of ME in Iceland?
Lilja: I would like it to be easier for patients to access doctors and healthcare professionals who are knowledgeable about ME. It would also be valuable to be able to connect with other people living with ME. It would be helpful to know whether anyone else has the same symptoms, or whether there are treatments, medications, supplements, or strategies that others have found helpful and that might also help me. I would also be interested in sharing my own experience over the past three months, during which my condition has improved. I believe that new medications have been a major factor in that improvement, although it may also be the result of several things working together.
- What does the future look like for ME/CFS sufferers in Iceland? Are there reasons to be positive?
Lilja: I sincerely hope the future will be brighter for people living with ME. I also hope that more doctors will join Friðbjörn Sigurðsson’s team, as more and more people are being diagnosed with ME and Long COVID, and the waiting time for assessment has become very long. Because so few doctors specialize in this field or have it as a particular area of interest, there is unfortunately very limited follow-up care available for those who have been diagnosed.
July 2026