'It was pretty intense and absurd. From an active, top-fit full-time student who also played sports at a high level, within two weeks I turned into a patient who just lay in bed and couldn't even walk around the garden. The whole life I had and the future I saw ahead of me collapsed all at once.' Inge, 27, tells it tidily and energetically, but her story outlines a long ordeal and search since she faced long covid in 2020. 'Oh, and after this interview I'll be out for the rest of the week too, you know, I won't get off the couch,' she adds.
It sounds as bizarre as it is terrifying. And Inge is certainly not the only one; in the Netherlands, there are an estimated 450,000 long covid patients who still experience limitations due to the disease. Of these, about 100,000 are severely limited in their daily lives - like Inge.
'We all just didn't know any better, so little was still known about covid and the damage it could do to some'
'The point is that there was still very little knowledge about long covid in the field, and that was certainly the case in the early days,' explains Inge. 'For example, in 2020, after a month of muddling through, I was sent to a physical therapist and a sports doctor to do an exercise test, among other things. Totally wrong, in retrospect; I was totally overexerted and was bed-bound for six months afterwards - which I don't remember much about, by the way, because my head was one big fog cloud.' Not that Inge blames anyone: 'We all just didn't know any better, so little was known about covid and the damage it could do to some people. Moreover, those exercise studies did provide many valuable insights.'
We are now 6 years on and much more is already known about long covid. Rob Wüst's research, which could be set up partly thanks to donors from VUfonds, has played an important role in this. His research showed that underlying biological mechanisms in long covid cause patients' symptoms to actually worsen after exercise. Building up fitness through sports and exercise thus has the opposite effect. 'That research made the news at the time, and that helped enormously to bring more social awareness and recognition,' explains Inge. 'Because still we as patients are not always taken seriously or understood - not even by the medical world. This research contributes enormously to patient credibility.'
'The grieving process of saying goodbye to the daily life you were used to is hard enough'
Research and especially dissemination of that knowledge remain important, Inge argues: 'Of the 44 social workers - from medical specialists to psychologists - I've had to deal with over the past six years, only a few were really able to mean anything. They saw what was going on, had updated their knowledge and could see past protocols. More knowledge and understanding could save a lot of suffering among long covid patients. Because the grieving process of saying goodbye to the daily life you were used to is hard enough, I know from experience.'
