Science Chronically fatigued by corona
Even months after corona still extremely tired: 'This is a new disease. And an exorbitant one'
Physically nothing seems to be wrong and yet some of the ex-covid patients still have serious complaints months later. These strongly resemble a misunderstood disorder, the chronic fatigue syndrome. Research into it is now underway.
Ellen de Visser - 14 August 2020, 14:08
Even a twenty-minute phone call is an energy-guzzling activity for journalist Wineke de Boer (44). "I knew you were going to call, I'll keep that in mind for the rest of the day," she says. "Because if I do too much, I am immediately punished for it." Two days earlier she went to the hospital for a blood test, she lives nearby, that's lucky; the rest of the day she was floored: cold, no appetite and so very tired.
"I'm still living like a mop," she said eight weeks ago
in de Volkskrant [in Dutch], and frighteningly little has changed since then. "I was sent
a video with light exercises and when I started I thought: these are exercises for someone who is almost dead. Lying on your back and lifting your head, I already had to recover from that. With the slightest effort I become cramped and my heartbeat rises rapidly." The fatigue can be so severe that she can't even read in the evening - then the words in her head are crushed into an incomprehensible mash.
Five months after contracting the corona virus, blood tests show that she is in perfect health. But where does this debilitating fatigue come from? "I'm beginning to doubt more and more whether this is going to be okay," she says. I try not to think about it too much, but I'm a lot bleaker than I was two months ago."
Tsunami
As more and more attention is gradually being paid to the long-term consequences of covid-19, there is growing concern about a range of unexplained complaints that are holding some of the patients in their grip. The most important: extreme fatigue. Over the past few months it has become clear that covid patients can retain
damage to their organs [in Dutch], which may explain part of the fatigue. However, these are patients in whom nothing physically seems to be wrong: no lung problems, no damaged heart muscle, no after-effects of a prolonged ICU, and yet exhausted after the slightest effort.
Doctors and scientists speak of post-covid syndrome, which remarkably enough seems to affect patients who have not been too ill from the virus itself. Their symptoms bear great resemblance to a misunderstood condition for which there is still no treatment, chronic fatigue syndrome (CFS).
Faced with the serious complaints of ex-patients, the American immunologist
Anthony Fauci felt compelled to warn last month: there is a group of ex-covid patients who, according to him, will develop CFS, he said at a press conference; a fear that is now shared by colleagues. '
A post-viral tsunami is flooding the health care system,' wrote British professor of infectious diseases Paul Garner recently on the site of the BMJ magazine, 'but the subject is not even on the agenda.' Garner himself was struck by a corona infection and has been writing in his blog for months about the after-effects ('three days of bed rest after a yoga class'), which gives him mountains of mail from fellow sufferers.
The Nijmegen emeritus professor Jos van der Meer, who specializes in CFS, also says that he expects 'a boom' in post-covid fatigue. After all, history teaches us that an infectious disease can leave patients like a rag: besides Pfeiffer's disease, also Q fever, Lyme disease and legionella are notorious examples. Patients sometimes retain complaints from these that Van der Meer calls 'impressive'. Where they come from remains a mystery.
Whether the corona virus also has such a bad prospect remains to be formally established: complaints must persist for more than six months in order to be able to speak of CFS. Earlier research into the consequences of SARS, that other corona virus, does provide a gloomy omen. The Canadian city of Toronto was hit by a SARS outbreak in 2003, especially among medical staff, and
a year later more than half of the patients still suffered from fatigue while their lungs were fine.
Three years later, it appeared that several dozen healthcare workers were still unable to work, with a pattern of symptoms similar to that of chronic fatigue syndrome: exhaustion, pain, muscle weakness, sleep problems.
Dutch patients have united in a Facebook group, which now has 14,000 members. The participants keep track of in which week, on which day they have arrived at, their stories are discouraging: about an elephant on the chest, need to recover from a few hundred steps, not being able to remember anything, and just being back to square one after 20 weeks.
Blood tests
Virologists and immunologists, intrigued by the flood of alarming reporting, are now setting up research all over the world to find out what happens to patients after the corona infection appears to be fought.
European researchers have already joined forces,
American scientists are searching the blood of cured patients for molecular changes, Dutch immunologists are considering doing the same.
In Amsterdam, professor of virology Menno de Jong and his colleagues have brought together a group of 150 ex-covid patients who they see every month. Some of them have been in the hospital, some even on the IC, some dozens have simply suffered a mild infection at home. Blood tests and questionnaires should provide the researchers with answers to numerous covid-19 puzzle pieces. Fatigue is one of the subjects, according to De Jong.
All this extra research could lead to the fact that after decades of uncertainty and controversy, the fog is finally lifting around chronic fatigue syndrome. A large proportion of CFS patients indicate that they have got complaints after an infection. But how such an infection leads to fatigue is unclear; no good explanation has yet been found for CFS, which affects some 40,000 people in the Netherlands. The disease is by no means taken seriously by all doctors. Because we are all tired at times, and if neither blood tests nor a scan reveal anything,
tired soon becomes associated with
lazy. CFS patients
often have to prove [in Dutch] to the outside world that they do not have an imaginary disease.
Recognition
But now that so many ex-covid patients seem to be developing CFS complaints, imagination could just turn into recognition and insight. Emeritus Professor Van der Meer, who devoted part of his career to the syndrome, expects new knowledge about the biological causes of the disease. The corona pandemic suddenly offers the opportunity for extensive research: the number of patients is large, they can be followed, groups with and without complaints can be compared.
Scientific attention is mainly focused on the immune system. American researchers suspect that the extreme fatigue of ex-covid patients is caused by an autoimmune disease, in which their disrupted immune system attacks their own body. It is a theory that could also explain chronic fatigue syndrome, the
Health Council of the Netherlands concluded [in Dutch] two years ago, after weighing all the studies. However, there is still no hard evidence. Van der Meer suspects that CFS patients suffer from a simmering inflammation of the brain, whereby the immune cells of the nervous system continue to produce more inflammatory substances than necessary. "Everything indicates that something is going wrong in the brain, but that is so difficult to substantiate, the abnormalities are subtle and it is impossible to biopsy the brain."
"Until now, scientists have mainly focused on the question: why does one patient become sicker from a corona infection than another, and what does that have to do with the immune system," says Professor of Medical Immunology Ton Langerak (Erasmus MC). "But in the aftermath of the disease, much more appears to be going on than we had previously thought." He too wants to research fatigue by making a profile of the complete immune system of patients.
Virologist De Jong does have a problem: let's not automatically attribute all complaints to the corona virus, he warns. "It's not strange that the body needs time to recover after a serious infection. After a strong flu you don't immediately feel well either." Don't forget that the fatigue after a covid-19 infection can also have a psychological cause, he says. "The frenzy was so great in recent months, there was fear, there was no treatment, we should not underestimate the effect of that." The questions he and his colleagues have been asking already cured patients since a few months are therefore also in part about psychosocial aspects.
Vicious circle
Jeanine Verbunt, rehabilitation doctor at
Adelante Zorggroep, talks about the patients with Q fever or Pfeiffer who only come to her after 'years of muddling on'. "They've been to the lung doctor, to the internist, they've had numerous examinations, without results; there's no underlying medical problem and yet they just keep getting so tired. If such a search continues for a long time, a vicious circle is created, because nothing is found. That's when people get depressed, and that makes their fatigue even worse."
Verbunt, professor at the Maastricht UMC, wants to spare the group of ex-covid patients exactly this despondent trajectory. Together with general practitioner and professor Jean Muris, she is now trying to create a risk profile so that general practitioners in the region can intervene quickly and patients don't keep going on too long with their complaints.
Muris has already had a number of patients at his surgery who indicate that they are so weak that they can no longer climb the stairs. There is that cyclist, a healthy forty-something, who always made trips of 150 kilometers and is now exhausted after 5 minutes on the exercise bike. Preventing it from getting worse, that's what they aim for; which doesn't mean yet, Muris says, that they can also eliminate the fatigue in patients.
What certainly doesn't help, Verbunt knows, is to encourage high-risk patients to exercise intensively. "Our knowledge of chronic fatigue syndrome teaches us that in such cases many patients then actually get more symptoms." Her advice: where possible, pick up the daily activities step by step and learn how to deal with fatigue. The British NICE, which draws up guidelines for doctors, has recently advised that patients recovering from covid-19 should
not be given exercise therapy.
Disbelief and skepticism, from doctors, from employers, from family: that's what ex-covid patients sometimes get, according to
British professor Paul Garner, himself for almost 150 days struggling with the consequences of a mild corona infection in mid-March. "This is a new disease. And an exorbitant one. There are no textbooks written for that, yet."
Wineke de Boer by now knows exactly how much she can move to keep herself physically and mentally in shape, and that's not much. She talks about the very small steps forward. That she no longer feels like her limbs are made of lead all the time. That she doesn't have to think at each step, whether she can take the next one. That she can now do that one exercise where she has to lift her head lying on her back, six times for a few seconds. "I cling to little things like that. But it progresses so slowly that sometimes it makes me desperate."
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