According to the latest figures from Sciensano, there are currently 100,000 long Covid patients in Belgium. Although this is still an underestimate according to Van Looy. “There are no exact numbers, because they are not recorded. So the number is based on estimates. In other countries, such as the United Kingdom, these estimates are much higher.”
Van Looy, 43, has been suffering from the disease for three years. “I live alone with my 8-year-old daughter. This is difficult, because I am in a wheelchair and am homebound 99 percent of the time. For example, I cannot take her to school or play with her. This is also difficult for me.” “When we see pictures from before I got sick, she sometimes says she wants that mother back. I feel so bad that I can't do that.”
Recognition and treatment
The working group is asking for recognition of long Covid, but also of diseases like ME/CFS which have many similar symptoms. Because few people are aware of different diseases.
They are also striving for more research and appropriate treatment. Because there isn't one yet, Van Looy says. “Rehabilitation therapy is now being offered, but many patients become worse as a result. We want to establish outpatient clinics.”
Due to the lack of treatments, many patients are desperately searching for alternatives. “There are certain treatments circulating in many groups that can help,” says co-founder and longtime COVID patient Nancy Munns. “But they're not always recognized and therefore not reimbursed.”
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