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.
