Since reading Jan Derksen’s opinion article about lung covid, my fingers have been itching to respond. I was trained as a general practitioner in Nijmegen. The Nijmegen Knowledge Center for Chronic Fatigue was located there. Their treatment for Chronic Fatigue Syndrome (CFS) consisted of cognitive behavioral therapy in combination with graded activity†
Graded activity This means that you resume your daily activities according to a personalized accrual schedule. Ignoring your fatigue. The idea is that you break the vicious circle of inactivity. This often has a positive effect in patients with only chronic fatigue. This treatment strategy is also successfully applied to people with chronic pain complaints.
Backfire
However, there are patients where this approach is counterproductive. I myself have three (female) patients in my practice who came out of this process worse than they went in. Two women have been diagnosed with CFS, the third with QVS (Q fever fatigue syndrome). The similarity between these women is that they get sick after physical activity, they have a longer recovery time than usual. We call this post-external malaise.
The woman who experienced Q fever in 2010 was incapacitated for work for a number of years as a result of QVS. She is now partly back to work. Happy.
QVS has remarkable similarities with the post-viral syndrome that can develop after covid-19, better known as lung covid1. Some symptoms are fatigue with post-exertional malaise, difficulty concentrating (brain fog), chest pain and fainting when standing still.
The latter phenomenon has been investigated by a Dutch research group2. It was found that in healthy people the blood flow to the brain decreases by 6 percent when they move from a lying to a standing position. In people with lung covid, the decrease is 25 percent.
Disabling
Both in my office and in my personal environment I see how disabling lung covid can be. A friend contracted covid-19 in March 2020. She worked as a teacher four days a week. The covid infection started with a fever for five weeks. Since then, she has suffered from a tendency to faint when standing still, irritable bowel complaints and an excessive sensitivity to stimuli. This sensitivity to stimuli means that she cannot tolerate her three children around her for long. She was recently declared unfit for work. Which in the light of last week’s coverage of the UWV can almost be called a miracle.
General practitioners are trained to work according to the biopsychosocial model, which we do not only do with lung covid. We know that stress and negative thoughts are perpetuating factors. I do not recognize the suggestion that the label long covid stands in the way of psychological help. Of course my girlfriend gets psychological help. She doesn’t heal from it. Occupational therapy helps her distribute her energy throughout the day. Psychological support helps her cope with the fact that life as she knew it abruptly ended in March 2020. I can imagine it being as traumatic as a serious motorcycle accident where you break both legs. The difference: it is visible.
Incomprehension
People with lung covid are not only bothered by their symptoms, but also by the imaging, the misunderstanding with which they are confronted in our society. For example, a UWV doctor who tells a patient that she ‘can work again for 36 hours. We don’t see a concentration problem, because you can tell your complaints so well’. She had needed a few days of preparation to put her complaints on paper. Yes, she had enough concentration to read the paper.
Why are these patients not taken seriously? Is it because 80 percent of this group is women?
In short, psychological help is needed, but does not solve long covid. Nor does it resolve other somatically unexplained complaints (Solk). That does not mean that there is no somatic basis, but that we do not know what it is. It’s a shyness diagnosis.
Hopefully, thanks to research into lung covid syndromes such as fibromyalgia and irritable bowel, we will gain a better understanding. Our knowledge is currently lacking. That is why I am calling for more research. Towards the neurological consequences of covid-19. Towards the role of mast cells. To factors that make the female immune system react differently than that of men. Who picks up the glove?
In the absence of knowledge, modesty befits us.
Suzanne Marcelis is a general practitioner.