I recently visited a good friend for the first time in a year and a half. I saw a demonstration at Amsterdam CS. It made me happy for a moment to think that people care enough about strangers to stand and sing in the cold on a Monday evening. I hadn't seen that friend for so long because I was too sick, and the protest reminded me of the lack of solidarity with long Covid patients. These people cannot demonstrate, while protest is necessary because healthcare is inadequate.
Long Covid is not a mysterious disease that appears out of the blue. It is a post-acute infectious disease that has much in common with other multisystem diseases such as ME/CFS, Lyme and Q fever. It was expected that a violent new virus would cause long-term complaints in many people. We know too little about these other diseases, but we do know something. There is also quite a bit of research into long covid itself.
As a patient in the Netherlands, you now have to learn to understand what long Covid is, where your symptoms come from and how to treat them. When reading medical literature and patient experiences, and developing your treatment plan, you also have handicaps, such as extreme fatigue (or paralysis – it feels like the dream where you want to move but can't) and brain fog (aka cement on your thoughts). .
A large proportion of patients (including me) improve through symptom control. Not everyone. So more research needs to be done and the speed has to be increased – developing a cure now takes far too long due to the bureaucracy of medical science and laxity of politics. But specialized clinics and good guidelines for doctors must also be established as quickly as possible.
In these clinics, medications and supplements can be prescribed that have proven their usefulness in trials. People also need to learn how their sick body works, such as how to deal with exercise intolerance (PEM). PEM is an exacerbation of symptoms that occurs 12 to 48 hours after physical, cognitive or emotional exertion – think of 'exercise' as showering, reading, or crying. PEM can also be caused by things like menstruation or heat. If someone continues to receive PEM, her resilience can permanently decrease. Some doctors and physiotherapists still recommend that people build up activity levels without taking this into account. Occupational and medical examiners and/or their protocols also sometimes cause PEM due to too many and too long appointments, and the stress this causes.
The term PEM was coined by people with ME/CFS. ME/CFS, like long Covid, mainly affects women (women are four times as likely to develop ME/CFS as men) and so little research has been done into it. ME/CFS has long been seen as a psychiatric condition (this is changing due to research into long Covid, which shows, for example, how exercise affects the muscles in sick people). How this destroys lives can be read in it report on the treatment of ME patients by the UWV, which was recently presented to the House of Representatives. Doctors and agencies such as the UWV naturally have little to fear: these patients do not have the energy to demand compensation or speak out in public.
People who have started recovery also benefit from other care. The more rest you give patients, the greater the chance that they will get better. That goes against neoliberal intuitions. But it's the only way. The long Covid patients I know share a specific kind of despair, partly caused by the disease itself and partly by the attitude of the outside world. Out of self-interest alone, those who are able to do so should commit themselves to better care, because with every corona infection you also run the risk of contracting long Covid. But I hope for your solidarity.
Eva Meijer is a writer and philosopher. She writes a column every other week.
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