On Sunday, 28-year-old Lauren said in an interview with RTL News that she has chosen euthanasia; this past New Year’s Eve was her last. The chronic disease ME (myalgic encephalomyelitis, officially called ME/CFS) is so restrictive that Lauren spends most of her time in bed and treatment is no longer possible. Lauren literally gets sick from exertion. Sometimes she is so exhausted that she can’t even lift her arm to drink water. Sleeping does not reduce exhaustion.
Thousands of comments
The widely read interview generated thousands of reactions on social media. People said they were impressed by her story and wished Lauren strength. But there are also comments like ‘I get tired sometimes’ and ‘you should just talk to someone’.
These are reactions that fellow sufferers of Lauren know all too well, say Lotta (21) and Judith (55). And patient organization MECVS Netherlands also ‘absolutely’ recognizes this, says chairman Theo Kuiphof. “The Health Council issued an advisory report in 2018 stating that ME/CFS is a physical disease and not a psychological one, but many people, including doctors, still have difficulty accepting that.”
180,000 people in the Netherlands
According to research from 2020, about 1 percent of Dutch people have ME/CFS, says Kuiphof. That’s 180,000 people. One in four patients is house or bed bound. “It is a disease that must be taken seriously.”
Judith is forced to tell her story via Facebook Messenger: calling would give her a PEM, a severe physical reaction that can last for days if something has taken too much energy. “When I want to walk out of the street, I experience worsening vision, extreme dizziness, painful tremors all over my body and a migraine-like headache,” she says.
Six times outside in 2023
The 55-year-old woman is largely housebound. Last year she went outside six times (“Twice for appointments that I couldn’t avoid”). Such an excursion – in a wheelchair – is not possible without taking it into account days in advance and being sick for days afterwards. She has to lie down for 18 to 20 hours every day, she says, at least half of which is in silence and darkness.
And yet there are many people who do not take her complaints seriously. “People I didn’t expect, even family members, have dropped me. Obviously because they think it’s nonsense. They don’t understand that I can have one or two people visit and then have to recover for days. And they I think it’s lazy that I can’t keep up with my housework. And what is completely nonsense in the eyes of many is that I quickly become overstimulated by light or sound.”
Very painful
Lotta also often hears unpleasant reactions. “They are not necessarily intended in a bad way, but they are very painful. For example, friends ask if I shouldn’t just go to bed a little earlier, or they say: ‘Why don’t you exercise? Because you don’t exercise much.’ If it would have been easy to get rid of my complaints, then I really would have done that.”
Lotta was 16 when she was diagnosed. Her GP referred her to a pediatrician, who did blood tests that turned up nothing. She was then sent to a psychologist. “He kept saying I wasn’t sick.”
“I still suffer from that. If I have fewer complaints for a day, I start to doubt myself: is it just me? But I know that is not the case. I am sick for days and sometimes even longer if I I once met up with a friend, completed my grammar school by taking exams over two years, but now I can’t study or work. What 21-year-old would want that?”
Acceptance even more difficult
This misunderstanding makes being ill extra difficult, says chairman Kuiphof of MECVS Netherlands. Accepting a chronic illness that is so limiting is already difficult. If others also give you the idea that you are showing off, it will only become more difficult.
According to lead researcher Jos Bosch of the AMC and the University of Amsterdam, the cause of such misunderstanding is a combination of unfamiliarity with the disease and a lack of modesty among the people who make such a comment. He and his team recently started preparing a large national study comparing medical data from people with ME/CFS (where CFS stands for chronic fatigue syndrome), but also Lyme, Q fever, mononucleosis and post-covid. In addition, a comparison is made with data from healthy people.
Neglected disease
“ME/CFS is a neglected disease,” he says. “There are more people in the Netherlands with this disease than with MS. But we still don’t really know how the disease arises and how it can be treated. For years, scientists also thought that it was psychological, but that depends on the insights that we have now is unbelievable and stigmatizing – although psychological support can of course help with the psychological suffering that is the result of the physical problems.”
“In ME/CFS patients, physical processes are disturbed. The difficult thing is: the same symptoms can also occur with other diseases. ME/CFS is therefore now a diagnosis that is made when other diseases have been excluded. But that does not mean that these people do not being ill.”
According to him, the fact that people do think this also has to do with the fact that there is too little knowledge about it, and people then start looking for an explanation themselves. “People, and sometimes doctors too, think they have knowledge that they do not have. In that regard, there should be more modesty. Science indeed does not know much about this disease, and as humans we do not know the whole science.”
More research needed
“In the past we thought that stomach ulcers were psychological, while we now know that they are caused by bacteria. People can even develop a very fatal form of stomach cancer from them. The complaints of people with ME/CFS are very consistent. That we Not yet understanding it scientifically doesn’t mean it doesn’t exist. Just that more research is needed.”
The fact that this research is now being conducted is partly thanks to the patient organizations that have lobbied for it, says Bosch. But what has also increased attention to the disease is the rise of post-covid. “The complaints of some post-covid patients are very similar to ME/CFS. And this also applies to patients who do not recover well from Lyme, glandular fever and Q fever. Due to post-covid, everyone suddenly knows someone with these complaints, and everyone sees how limiting they can be: someone who used to be very active and sporty suddenly can’t do anything anymore. That’s the same with ME/CFS.”
Possibly the same cause as post-covid
The cause of the different diseases may also be the same, says Bosch. “In America they mention post-covid and ME/CFS in the same breath. In Europe we are a little more cautious. But an important theory is that all these diseases arise after infection with a virus or bacteria. If that theory is correct, it is a autoimmune response: the body responds to the pathogen, but then also attacks parts of the body itself.”
The hope is that the new research, in addition to providing insights that can help find a treatment, will also lead to greater understanding. Kuiphof: “That would make many things easier. When applying for benefits, you are no longer dependent on the beliefs of an insurance doctor. You also no longer have to fight to get treatment reimbursed. And hopefully patients will then receive less to hear unpleasant comments, because the disease is annoying enough.”
2024-01-04 10:43:07
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