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Patient stories

ME/CFS has a huge impact on patient’s lives. Read some experiences in the patient stories below.

Experience of Marieke

Visited by: Sara en Sophie (Utrecht) 

‘I realise how important research into PAIS is for developing better treatments and providing appropriate care. Despite my severe post-exertional malaise (PEM)-symptoms (a worsening of symptoms after exertion), I would really like to contribute. That is why I have signed up for several research studies recently

I received a phone call asking whether I wanted to participate in a study investigating, among other things PEM. I was keen to take part, but I also explained honestly that it had taken me months to recover after a visit to the doctor. Fortunately, I could participate from home and decide for myself what was manageable

Beforehand, I received clear information about exactly what I was giving my consent to. They also asked what worked best for me, for example whether I was able to talk, whether I preferred lying down to sitting up, and how I responded to various sensory stimuli. This immediately gave me a sense of control.

The way the visit was conducted was excellent. Healthcare professionals could learn a lot from this approach! Everything happened at my own pace, and I was able to remain lying down while my blood was being drawn.

They continually checked what would make me most comfortable, and I could stop at any time. The researchers even took off their shoes to make less noise.

I am curious about the results, although I know it will take some time before they are available. Above all, I hope this research will improve our understanding of the illness and contribute to better treatments. In any case, I am glad I was able to contribute in a way that worked for me.

For anyone who is unsure about participating: the researchers really do take your individual needs into account. You can work together to explore what is manageable for you and under what conditions. That is precisely what made the difference for me.

Note: Also read the article on national media coverage of the mobile laboratory, featured in De Volkskrant. The article highlights the mobile laboratory used by Sara, Fleur and Sophie to visit bedbound and/or housebound patients with ME/CFS and PAIS.

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Experience of Evelyn

Visited by: Sara en Sophie (Utrecht) 

I received an email with information saying that I had registered for research into post-COVID and ME/CFS. I have never had COVID, so this was very confusing.

During the telephone intake with NMCB, things became clear. There are two separate studies. The DOMINO study needs control participants with ME/CFS, and I am one of them. The combined research visit was carried out by Sara and Sophie from the DOMINO study team, and all further communication went through them.

Before the home visit, I was able to fill in a form indicating what they needed to take into account during the visit. For example, keeping the room dark, speaking softly, and whether or not I wanted to chat, among many other things. The 11 a.m. appointment was quite early for me, but a later time was not possible because the blood samples had to arrive at the laboratory in Amsterdam before 1.30 p.m.

During the visit, they spoke softly and kept their energy levels low. They continually checked how I was doing, whether I needed a break, and whether I still wanted to continue with the next part of the assessment. That was really reassuring. At the end, they even got some food for me from the kitchen.

Later, I completed the cognitive test online. That was tough! The instructions are provided through videos, and even though everything is presented calmly, this can still be overstimulating. The test consists of two parts, both of which have to be completed in one sitting, so it requires quite a long period of concentration. I actually found the test itself manageable, but about fifteen minutes after finishing, I experienced a huge crash. It was clear that I had used up all my energy on it.

I had a really positive experience. It was so refreshing to be treated with such consideration for me and my ME. And it feels good to be able to contribute to research. So, if you can, do it!”

Note: Also read the article onnational media coverage of the mobile laboratory, featured in De Volkskrant. The article highlights the mobile laboratory used by Sara, Fleur and Sophie to visit bedbound and/or housebound patients with ME/CFS and PAIS.

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Etty’s story

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Now, at the age of 72, I find it difficult to accept that serious biomedical research into ME/CFS is finally being carried out. This should have happened much earlier.

Diana’s story

When I caught COVID in March 2020, it came as a complete shock. I simply hadn’t considered that I might get it. I was very sporty and went spinning several times a week. The news mainly focused on older people, people who were overweight or people who already had health problems. So I thought: how could this happen to me? I was very ill for two weeks and extremely short of breath. After that, I never really recovered. I remained exhausted, had lost all my muscle strength and sometimes even fell asleep while eating.


It went on like that for at least a year and a half. After that, I slowly began to feel a little better, but I never fully returned to my former self. I could no longer exercise the way I used to. Nevertheless, I found a new balance. Until I caught COVID for the second time, in 2023. I immediately knew things were going wrong again. This time, the symptoms were different. I was less short of breath but struggled much more with brain fog. I couldn’t find the right words, could no longer speak in normal sentences, and developed severe muscle and nerve pain. Sensory overload made me feel ill.

Fortunately, more help was available by then than at the beginning. I tried several types of therapy, which did help. Over time, the sensory overload also became less severe. But when I’m tired, my head still feels as though it’s too full. I simply can’t think clearly any more. The fatigue remains the hardest part. It comes and goes. Sometimes I feel better for a week; at other times, I suddenly find myself in a slump that lasts two or three weeks. It always catches me off guard.


I still try to keep working, for a few hours a day. It helps me mentally. Fortunately, I have a lovely workplace where people are very understanding. I can rest whenever I need to, and no one puts pressure on me. That makes a huge difference. At the same time, post-COVID has made my world smaller. I used to have a rich social life, was always active and spent a lot of time with other people. Now I constantly have to plan, cancel and make choices. That isn’t always easy for others to understand, especially when they hear that I can work but don’t have the energy to meet someone for a coffee. It has also cost me some friendships, and that hurts.

Perhaps what I find hardest of all is not knowing how long this will last. I don’t know whether I will ever fully recover. There is no clear milestone to work towards. At the same time, I can see that I’m making progress, step by step. I can manage stairs better again, and I’m cautiously working on rebuilding my muscle strength at the gym. These are small glimmers of hope that mean a great deal. They give me something to hold on to.

I made a conscious decision to participate in the NMCB study. Not because I expect it to directly improve my own health, but because this research is necessary. I hope it will provide greater insight into post-COVID, its symptoms and what happens in the body. As part of the study, I also underwent the NASA Lean Test. For this test, you first lie down and then stand leaning against a wall for ten minutes while your heart rate, blood pressure and symptoms are monitored to see how your body responds to being upright. I found the test very confronting, and I continued to experience its effects for a long time afterwards.
Nevertheless, I’m glad I took part. I hope that, ultimately, a treatment will become available that is safe, affordable and accessible to everyone. As for myself, my main hope is that I can continue to make progress, one step at a time.”

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Linda’s story

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When I finally got the diagnose, that was sad AND a relief.

Martin’s story

Martin (34) worked as a researcher at TNO and led an active, sporty life. That changed when he contracted COVID for the second time in 2023 and failed to recover. Since then, he has been living with post-COVID and POTS, carefully dividing his days into small, manageable chunks.

““It started off quite mildly. I thought: a week of rest and I’ll be back to normal. But I never recovered. I developed brain fog, headaches and, later, POTS. As soon as I stand up, my heart rate shoots up. I can still go for a walk, but I can no longer do things like cook. My body feels as though it’s about to give way. I found that really frightening at first.

“Since then, I’ve had to structure my life in one-hour blocks. One hour up and about, followed by half an hour resting in the dark. That’s how I manage. Over the past two years, I’ve never been able to work for more than one hour a day. This week, my employment ends because I’ve been on sick leave for two years. That’s difficult. But I believe this is temporary and that I’ll eventually recover. That helps me avoid falling into despair.

“In the meantime, I’m mainly trying to focus on what I can still do. For example, I’ve started crocheting. It gives me a sense of achievement. Fortunately, the people around me have been very understanding. People have a better awareness of post-COVID these days, and that helps. I also receive good care for my POTS: medication, compression stockings and plenty of salt. It doesn’t cure me, but it makes the condition more manageable.

“Recently, I took part in the NMCB study in Amsterdam. Travelling takes a lot of energy, but I received excellent support there. During the Lean Test, I had to stand still again, which is difficult for me because of my POTS. But I felt safe. I was completely exhausted afterwards, but also proud that I could contribute to research.

“My days are simple now: getting up slowly, going for a short walk and making sure I rest in time. It’s not the life I had imagined, but step by step, I’m learning to cope with it. And I continue to hope that treatments will be developed that can help people like me truly recover.”

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