The scientific uncertainty about chronic fatigue syndrome (CFS) offers patients little prospect of a better future. ‘The medical world must adjust its vision,’ they believe.
“I will have to pay for this conversation for a week,” Michiel Tack (31) says at the start of our video call. ‘But I am happy to sacrifice myself to give this misunderstood disease the attention it deserves.’
Michiel lies with his laptop on his lap in his sick bed in a crisp white care apartment. After every household task, he goes to that familiar bed to regain his strength.
Next to him is his Dutch girlfriend, Evelien van den Brink (39). Both wear striking sunglasses. Their condition makes it difficult for them to tolerate daylight. Evelien is also seriously limited in her functioning, it is a miracle that she is still alive. Early in her illness, she could no longer even talk or get out of bed. She survived, but that’s not the case for everyone.
“Sometimes it just stops,” Michiel sighs. ‘A week ago we had to say goodbye to a fellow patient from the Netherlands. After After a debilitating ordeal, she opted for euthanasia. She has always continued to fight courageously in the hope of recovery, but after seven years of unbearable suffering and almost continuous bedtime, a person reaches the limit of what he can bear.’
The disease in question is chronic fatigue syndrome (CFS), an invisible multisystem illness whose cause is still unknown. Michael prefers the name ‘myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)’, the term commonly used in the scientific literature.
“The label chronic fatigue syndrome is far too inclusive and misleading because the disease goes far beyond the symptoms of fatigue and involves serious physical complaints,” he said. ‘ME literally means “inflammation of the spinal cord”.’
‘A Living Death’
The symptoms of ME/CFS include abnormal and total exhaustion that does not go away with sleep or rest, exercise intolerance, muscle pain, migraine attacks, balance and sleep disorders, sensitivity to light and noise and mental fatigue, the so-called brain fog. The difference with burnout is that the complaints cannot be traced back to (work-related) stress. Infections and inflammation are probably the cause. Many viruses, such as the Epstein Barr virus, which causes glandular fever, and the coronavirus are harmless for most people, but for others they cause a lot of misery.
Such an infection, contracted during a school trip to Sicily, forced Michiel fifteen years ago to shelve his future plans. What seemed like a banal cold turned into hell: studying, working, traveling and going out were no longer an option for him and his social life also disappeared. Doctors could not tell him what he was suffering from. For There is no diagnostic test for ME/CFS, let alone an effective treatment. Michiel has tried everything. From exercise therapy to nutrition to – out of sheer desperation – experimental treatments. Like the 30,000 other ME/CFS patients in our country, he was referred to a psychologist for cognitive behavioral therapy, because it could well be ‘all in the mind’. Ultimately, he discontinued all therapies.
Yet Michiel and Evelien do not belong to the extreme cases. Some ME patients become completely bedridden and dependent over time. Michiel tells about a fellow patient who spends her life in bed, completely in the dark, with a camping toilet next to her. She is too ill to stand upright for long periods of time, can barely see her son and cannot tolerate touches, light or sounds. ‘A living death’, they call it.
Dignified existence
‘Is it still a dignified existence if you can no longer shower, eat or go to the toilet?’ Michael wonders. ‘This isn’t living. This is survival. Some patients are even too sick to seek help. The noise and the many questions that come with care devastate them. Moreover, in Belgium there are no specialized hospitals that offer tailor-made care. Very severe ME/CFS patients cannot even reach a hospital due to an extreme lack of energy, meaning doctors are no longer in contact with them. (see box) The severity of their limitations makes them disappear from public life, they form a hidden community.’
Patients are also often traumatized by healthcare providers who push them beyond their limits, Michiel knows. ‘I hear horror stories from patients who are not believed or understood. Or they are put on training programswhile science shows that this does not help and they can’t handle it. It is extremely frustrating for patients when doctors give advice such as “get more exercise” or “don’t focus too hard on the symptoms”. It’s like they’re talking about a completely different disease. A from my doctors I didn’t know that light sensitivity is one of the symptoms of ME and I thought I was being embarrassed with those sunglasses on my nose. It is anyway the world upside down that patients should explain to doctors what exactly their disease entails?’
Battle between visions
While in other countries the approach to ME/CFS focuses, among other things, on the search for physical markers for the condition, the dominant view in Belgium is the biopsychosocial model. Michiel: ‘Experts juggle with holistic words, but in practice ME patients are still referred to psychiatry. It is significant that CFS centers in university hospitals mainly employ psychologists and psychiatrists. Initially, doctors are friendly and understanding, but as all kinds of tests turn out to be negative, they bring up the well-known line that it “might be imaginary.” All so that they don’t have to admit that they don’t know either. While there are diseases that we do not yet know about and about which we will only have a definitive answer in the future.’
The fact that medical science is constantly evolving is evident from the past corona pandemic. Long Covid, which occurs in one in 20 patients, shows striking similarities to ME/CFS. A large proportion of long Covid patients recover, but some develop a similar clinical picture as Michiel and Evelien. The question arises: Would we have had an answer to long Covid today if ME/CFS had not been overlooked in science?
Sickbed in Parliament
Suddenly, Evelien turns Michiel’s laptop towards him and speaks slowly and serenely: ‘It has been clear for years that the current psychosomatic approach does not work. We’re not getting better. Why doesn’t the medical world adjust its view? I have been ill for 25 years. Generation after generation hears the same song. If one really wants to tackle ME/CFS in a multidisciplinary manner, one must take the biomedical aspect into account.’
To strengthen her claim, Evelien showed up in 2019 on her sickbed enter the European Parliament. She made a plea for fundamental biomedical research into the causes of ME, just as research is done into the causes of cancer. ‘It was once thought that cancer was caused by repressed dark thoughts, MS was called “hysterical paralysis” and AIDS was said to be caused by the stress of being gay. Fortunately, those times are over. Thanks to science.’
Parliament calls on Member States to release funds for research into unexplained diseases that have been under-researched in the past. ‘I sincerely hope that something will come of it,’ says Michiel, ‘first of all for the people with long Covid, because those patients are also having a hard time. Although I am also realistic. It is a long-term job and requires a huge amount of money. In Belgium there is the additional problem of the federal state structure. Scientific research is a Flemish competence, public health is at the federal level. Then it is easy for those responsible to point fingers at each other.’
Never lonely again
Despite the current attention to long covid, Michiel and Evelien are waiting for the big change. ‘Apart from some recognition here and there, we see few concrete steps on the ground. The majority of research consists of observation. Treatments still involve diet and behavioral therapy. The most important question remains unanswered: why do some patients not physically recover from an infection and even become sicker?’
“I have put away the hope of a breakthrough during my lifetime,” Michiel concludes soberly. ‘My goal in life is to ensure that the next generations who contract the disease do not have to endure the same thing as we did. I wouldn’t wish such loneliness on any future patient.’
More information on the patient association website: 12ME
What does science say?
A rapport of the Supreme Health Council (SHC) from 2020 states that ME/CFS is a controversial subject, ‘but there is no question of a purely psychological etiology (‘between the ears’)’. The SHC does not recommend systematic use of cognitive behavioral therapy and graded exercise therapy as treatment, given their questionable effectiveness. He also points out the risk of possible harmful effects of exercise therapy. The SHC emphasizes the importance of exercise within the patient’s capabilities.
The Multidisciplinary Diagnostic Center for CFS of the UZ Leuven, the only ME/CFS center in the country, provides a evaluation report that it does not reach the group of patients with the most severe degree of CFS/ME, who are confined to a chair or bed and have a very low level of functioning. ‘When these patients present themselves, it almost always turns out to be much too difficult for them (they need a wheelchair, dark glasses, headphones, a supervisor, etc.). We are forced to refer these people to a residential setting, but due to the seriousness of the problems and the fear of misunderstanding (and often after bad experiences in the past), these patients almost never respond to this.’
Although it is not clear exactly how many people are involved, the report speaks of a significant number of patients who do not have sufficient access to adequate and necessary care.
2023-10-22 08:00:37
#Michiel #Evelien #testify #chronic #fatigue #syndrome #life #survival
 "Antwerp’s Loss to Charleroi Puts Them Eight Points Behind Leader in the Belgian Championship")