My name is Naomi and I have been ill for 5.5 years. It all started during my final internship in Ostend in 2018, when I was 19 years old. After an infection, I developed flu-like/cold symptoms, from which I never fully recovered. The exhaustion, loss of strength, dizziness, etc., persisted.
Besides my internship, I had no energy left to eat, shower, or tidy up; all my energy was depleted. Resting more and reducing hours did not help. At this point in my life, I was also quite active and went to the gym every week.
There was no improvement after my internship; I lacked energy for my own self-care, school, work, friends, and sports. Because I had many plans for the future after receiving my diploma and something was clearly wrong, I went to the doctor.
A diagnosis and clarity only came in 2021. Before that, I followed the Graded Exercise therapy (GET) with suspicion of chronic fatigue syndrome, which only worsened my symptoms and led to more muscle weakness. The therapist responsible for the GET said my condition didn’t fit into ‘ordinary’ chronic fatigue, she didn’t recognize it and she was also not familiar with Post Exertational Malaise (PEM). However, the doctor still didn’t give me a diagnosis or treatment.
Once I received the diagnosis from a specialist in Amsterdam, I underwent medical treatment (which unfortunately had no effect) and received support from an occupational therapist to help stay within my energy limits and prevent PEM. Unfortunately, my health has continued to deteriorate since then, making working no longer an option.
I don’t go outside much, except for medical appointments; I have several aids including an electric wheelchair due to my decreased mobility, and I’m lucky to see my friends four times a year. Since I still live at home, it’s mainly my parents and partner who take care of me and the household. In particular, my parents often struggle that my life has turned out completely different than we had envisioned.
Thanks to my best friend, I was able to go to London for one last time in 2023. Due to Covid and my health, this seemed impossible before
Fortunately, I have many supportive people around me. In healthcare, I’ve heard many unpleasant comments from doctors who didn’t want to help me, saying I’m keeping myself sick, it’s all in my head, and it’s not as bad as my current caregivers and I say it is.
If everything is as written on paper, then my life is not worth anything. Unfortunately, I’m not the only ME/CFS patient who has had these kinds of experiences with caregivers or doctors, due to the lack of knowledge, care, and support. There are even patients who receive less help and understanding than I do and who are seriously ill and not seen. That’s why I want to contribute and hope to make a difference.
In April 2022, I volunteered for the ME/CFS association, after which I (together with Michelle van der Heijden at the time) could start as coordinator for patient representation, and since October 2023, I have also been secretary (general board member).
Coordination mainly took place with Ieke van Doorn (former board member of the ME/CFS association), and afterward, I also worked with Lou Corsius, Markus Sjouke, and Betsy Oortmarssen (from the Steungroep ME & Arbeidsongeschiktheid).
We organize meetings and PGO courses (courses that prepares the experts for their role as patient representatives in research) for patient representatives from both the support group and the ME/CFS association, who participate together in the subprojects of the NMCB. They make a valuable contribution to each study, making researchers aware of the importance of research, diagnosis, and treatment.
The project leaders will also attend a PGO course themselves, so they can gain more experience/knowledge about involving patients in research.
I hope to continue contributing to the NMCB project for a long time and that something will soon change in the care for ME/CFS patients. A diagnosis and possible treatment are worth a lot, but recognition and empathy from doctors are equally important.
