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.
