An interview with #NIETHERSTELD for severe ME day.
It was a very special experience for me to be able to speak so extensively about severe ME. About what having severe M.E. means. How it’s affecting me on a daily basis. How I became severe. What people with severe M.E. need. What needs to be done better and how I cope with this awful disease.
I hope it may contribute to a better understanding of what ME means. That it can help others feel a little less alone. I want to thank my fellow people with ME for their contribution to this video by sharing their most vulnerable moments with this disease. Together we stand / lie stronger.
For those who can’t tolerate videos here’s a transcript although I hope people will watch the video too. The video has English and Dutch subtitles.
Many thanks to the people of #NietHersteld for trusting me and for giving me a platform.
What is it like for you to have severe M.E.? What exactly does that mean?
Severe ME means to me that I can do very little. That I always feel sick. Kind of a flu-like feeling. As if you have a big hangover and haven’t slept for a long time. My body feels kind of poisoned. As if yes there is a lot of lactic acid build up. The way you experience it during a mountain bike ride or in my case a ballet. Have danced a heavy ballet piece and you’re always kind of at that point where the muscle acidification is kicking in, but without really making an effort. So you’re always close to that threshold and with the slightest effort you surpass it.
The most recognizable symptom of this disease is that with little physical,
cognitive and to a lesser extent emotional effort you can become more ill. And that can last for days, weeks or even months or cause a relapse. This is often referred to as post-exertional malaise or PEM.
Often such a PEM crash is delayed by about 12 to 72 hours before you really feel the impact. It doesn’t really matter if it’s a fun or less fun activity. The crash always comes. Some people associate M.E. with fatigue, but for me that is not right. I see it as an energy impairment where my battery only charges for about 2%, but I have to get through my day with that, so if I exceed that limit, I can therefore become more ill for an extended period of time. As a dancer I got fatigued or tired after a day, a whole week of hard work of course, but that’s not something experience with M.E. this way. I don’t see M.E. as chronic fatigue.
The efforts that can make me more. Ill are for example the processing of light and sound. As a result, I always live in a darkened house and I always wear earplugs. Yes, if it is like very, very noisy, then this one (construction workers headphones) will go over it and if there is too much light, this one (sunglasses) will. So that’s slightly claustrophobic. Anyway, reading or writing pieces can also be problematic. And talking is also hard, because pushing the air out of my lungs that, in a few sentences, could crash me quite a bit. That’s going a bit better now, but I really have to take breaks in between so I don’t become more ill because of it. So I’m going to take a break now. I already notice that it’s getting too heavy otherwise.
Many people suffer from orthostatic intolerance. That is because of problems with the autonomic nervous system and the blood flow, the inability to sit or stand upright for a long time. This is also the reason why I always have to lie down and have a bed in the kitchen, so that I can easily grab and prepare my own food. Since a year I also have an electric wheelchair, which can also be completely horizontal. Basically everything happens horizontally. If I sit or stand upright for too long, I can also get a PEM crash, which makes me more ill for days.
If you don’t sleep what do you do?
I don’t sleep during the day, only at night, so I have to try to entertain myself as much as possible during the day, but yes, resting and trying to take care of myself is just really a day job. And I see that as heavier than my working days as a dancer. Yes, that was peanuts compared to this disease actually.
In the time when I could do nothing but lie in the dark, I just wrote a lot of blogs, had scientific discussions and made choreographies. Just always busy in my head trying to distract myself as much as possible from how I felt, because physically you feel really awful and that helps distract you a little bit. By the time things got better, very long blogs and the like were written as a result. And I’ve recently started photographing and filming again, so.
What about your personal hygiene?
Personal hygiene, what is that? No, personal hygiene has really been at the bottom of my list of things to do. Simply because it makes me too ill. Since 2015 I still haven’t been able to take a shower, for example, or take a bath. I try to keep myself clean with some baby wipes, but I can’t do that in one go, so I have to do it in parts. So carefully washing the armpits. Try to rub it clean and then do the rest a day later or a few days later. And don’t rub too hard either, because that can cause a PEM crash. So trying to do the body little by little.
Hair washing the same. I hadn’t been able to wash my hair since 2015. Once in a while I shave it off and then I use baby wipes to get my scalp clean. But yes, that only works temporarily until my hair is too long again and then it starts all over again. Since I now live in quieter home and I crash less because of noise from the neighbors and I have a wheelchair, an electric wheelchair, I can now drive to the bathroom and there we have made a platform that I can lie on and that’s how I can now wash my hair, and that happened for the first time a month ago. Of course it made me a lot sicker, but it was really nice to have a completely clean scalp for once. Simply a luxury.
Also going to the toilet, that has to be done lying down and that happened in bed. My faeces in garbage bags and urine in bottles, so of course that’s not ideal for cleaning either. Especially if you can only do that to a limited extent, but nowadays that also happens in the toilet. Lying down so that’s very nice too. Just mentally it is also very pleasant to be able to use the toilet. Again a huge luxury.
In addition, I also crash from having people around me or if they are around me for too long. When I was really at my sickest I had that if someone just walked in and left without saying anything. Very fast and then I could crash for days. That’s a bit better now. But I see someone once a year or so, and sometimes no one at all. Just nobody for a whole year. That also makes getting care at home very difficult because I just don’t tolerate people around me. As a result, I live in complete isolation and receive no further visitors. People sometimes ask if they can come and visit, but yes, it’s just often just not feasible. The decision to do nothing and remain reasonably stable versus having someone over to temporarily be a bit cleaner and potentially make you sicker for a long time or even permanently sicker is then made easy. So although it’s getting better with having people around, I’m still very hesitant about yes, care at home in that regard.
What do people with severe M.E. need?
I think there should be more education for healthcare professionals. For sure about M.E. in its entirety, but certainly what impact severe M.E. can have on someone and what can best be done. I recently made a documentary and a lot of healthcare professionals watched it and they were quite impressed by the seriousness of the disease. They just weren’t aware of it. Of course I was very happy that they had looked at it at all, but it also indicates that people simply do not know how serious the disease can be. And important in that is that me filming or recording myself like this now, I couldn’t have done that a while ago. I was even sicker. At that time I couldn’t really operate a telephone properly and there are people who are even sicker than I am. Those who lie in completely darkened rooms and cannot eat properly and are kept alive with tube feeding. Who can’t talk, who can’t stand sounds, no music, no videos and photos, no communication, nothing at all. They cannot turn over in bed themselves, they need help with everything. That really is pure hell, and unfortunately there is often simply no medical guidance at all. Because they don’t know what to do or simply do not believe in M.E..
I myself have not seen my doctors in the flesh for ten years. It was over the phone first. Interactive talking is for me and especially when I was more ill, at that point that was just out of the question. So after that it went by e-mail, but that also became increasingly difficult and heavier. So at some point there was just no longer any care at all. If we can already talk about care in that sense with my GP. Fortunately, I still have contact with a specialist who understands it. But yeah, there’s just not much else.
It gets really bad when it comes to young people. Children, who are seriously ill. Where the family or the parents are then threatened with child protection proceedings. I once needed help to find a temporary home. There was some renovation. And my GP then sent a psychiatric crisis service to me. Or so she ordered it, when there was no indication at all. That has led to a very stressful situation. She just didn’t know what else to do.
So the lack of care or the provision of the wrong care can be very traumatic for people who are so seriously ill. The number of suicides is then worldwide, also because of the hopelessness and the lack of care and knowledge, alarmingly high.
The literature on severe M.E. that is available, practically does not reach healthcare professionals in the Netherlands. And the guidelines are obsolete. They are still based on cognitive behavioral therapy and graded exercise therapy. And these in turn are aimed at building up your activity levels that can worsen you because of the PEM. Fortunately, we increasingly see a change of course on an international level, but not yet in the Netherlands.
Of course it is very important that healthcare professionals take M.E. take patients. But I think for people with M.E. it is much more useful that they are dealing with healthcare professionals, who have expertise and who therefore offer appropriate care. And iatrogenic harm can thus be prevented. In my opinion, there is enough information available to prevent these kinds of problems altogether. It’s just unnecessary.
We are also seeing it now with the influx of many Long-Covid patients that those with a severe form, they too are not properly taken care of. Many of the guidelines and advice are aimed at people who can still come to the practice and those who can’t, are just like M.E. patients medically neglected. It is often just a repetition of mistakes from the past and that must and can be done much better.
What can friends or family do to help?
I think the best thing people around you can do is just offer practical help. When I was very ill I would receive sweet messages from people saying they were thinking of me or that if I needed anything I could let them know. Both very sweet, but if you can’t operate your phone and, yes, writing and reading is too heavy, then it is very difficult to reach out to everyone to find someone who could help you with something. Of course, messages that someone is thinking of you are comforting. But yes, since many people just don’t get enough help and people who already help often are already overworked. I mean the carers, practical help is really always urgently needed. So if you have time, just tell them that you have time today or tomorrow or next week. Or ask them what you can do for them.
Were you instantly severe or did it happen more gradually? How did that develop?
My becoming seriously ill is a combination of getting the wrong advice, infections, medical neglect and lack of knowledge among healthcare professionals
At the beginning of my illness after my CMV infection, I was advised to try a form of graded exercise therapy or something similar in the hospital with a physiotherapist. Because of the PEM I became considerably more ill as a consequence. And yes, the question is always whether that also contributed to the fact that I am also much sicker now.
Years later I made some progress after a treatment for my intestines. I then started teaching twice a week at the University of the Arts and that went reasonably well. But, doctors were like telling me that I should slowly start doing more and a doctor at the U.W.V. (unemployment office) who attributed the fact that I did not recover to my partner’s death. Which had happened three years after I got sick. So yes, always that idea that everyone eventually will just recover. That is unfortunately not the case. But yes, I really wanted to recover as well, so I tried it again. but eventually hit a brick wall. First I got sick. A friend of mine got a stomach flu and I got that afterwards as well, and six months later another infection and that really made me, yes, housebound again. I also had to stop teaching immediately.
Another infection at the end of the year, and then, yes, I really became bedridden and spent three months in the dark for the first time. I recovered a bit after that, but I’ve always remained housebound. So that was really…that was really the switch. At least the beginning of it.
In 2015 I lived in a house with a child upstairs. It was a very noisy house and it ran back and forth a lot, and I couldn’t bear the noise at all. So I quickly became bed bound. Within a few months and then, out of necessity, I tried to hide in…on the floor of the toilet. It was the least noisy. And then in a walk-in closet and then in a soundproof booth.
I then applied for a declaration of urgency. That doctor who came by did not know at all what PEM or orthostatic intolerance was. He thought I was chronically fatigued and he saw no medical grounds for a new home. So yes…
I then lived there for another half a year and deteriorated even further. We then found another house, but it was not suitable either. Also upstairs neighbors, those people also had a child. A major renovation too, so I spent six months in the bathroom there again. That was really horrible too. I ended up getting a serious infection and a bad flu. Something like a fever of forty degrees Celsius and then I became so hypersensitive to food. To everything actually. I then lost a lot of weight and after my friends helped me to get a W.M.O. (social support act) declaration we found a new home. That’s where I live now. An upstairs apartment with no upstairs neighbors, and I can drive around here in a wheelchair, and things have improved a bit since then. That’s why I can do things like this now. But yes, I have not recovered and physically I am in much worse shape than when. And yes, in my opinion that could have been prevented with adequate and quick action.
How do you hold on? How do you manage to cope?
That is a good question. First, I have surrounded myself with friends who support me. That hasn’t always been the case. But yeah, I think that makes a huge difference. The disease is already heavy enough, and if you are also fighting with your environment all the time, it is even more and unnecessarily burdensome.
After my first three months in that dark, and that I’ve noticed that there’s just very little help. I decided to share more about my experience with the disease and certainly also as a professional ballet dancer. Especially because with this disease it was often claimed that we people with M.E. were mainly deconditioned or suffered from kinesiophobia and that kind of nonsense. Yes. So since then I’ve been trying to share as many articles as possible and, if my health allows, to engage in scientific discussions and create as much awareness as possible. Apart from finding it necessary and useful, it also keeps me going. Figuratively then.
I also can’t stand injustice. I think this disease has long been misrepresented, where potentially mentally and physically harmful behavioral interventions that have been seen as preferred treatments, an have been presented as curative, and that has frustrated biomedical research, or at least its progression. It is a great motivation for me to contribute to change that narrative. So I won’t really be able to rest until that is resolved. If not for myself, then at least for future generations.
I also have my cat Grigor who provides a lot of regularity. I have a certain schedule that I have to stick to, so that also makes a difference. It gives regularity and it is good for my mental well-being.
I’m lucky that despite the illness that I’m mentally quite stable, and that makes it just a lot easier to keep my head up. I think that if I also had a depression on top of it, it would just be a lot harder and more unbearable. But I also think that your environment plays an important role in that if you get enough support, that it is also easier to persevere mentally.
What would you like people to know about severe m.e.? What would you like to say as a patient?
I think that some people still think that M.E. means someone is fatigued or tired and someone who has severe M.E. is extremely tired and that people with severe M.E. are mainly deconditioned. That they have a fear of moving and that by adjusting behavioral factors this can be solved and that people with M.E. are depressed. There are many misconceptions about M.E. in that regard. People with M.E. are not tired, they are just ill. And if you have severe M.E. then you are seriously ill.
For example, I myself am not lying in bed because I am primarily deconditioned, but because I simply cannot sit or stand upright, or at least not for long, because of my orthostatic intolerance. Not because I’m tired. If I’d been tired, I’d be walking down the street right now, I might even have a job. Part time. But that, yes, that’s not the big problem.
There are plenty of studies showing that M.E. is not a depression or an anxiety disorder. Unfortunately, we still hear that people think that it is the case. And even if people do have depression or an anxiety disorder, we only see it in a minority of people with M.E. and that says little about the disease itself. I do not mean to say that one is more or less than the other, but that it should be treated and approached differently.
What do you want to say to patients?
Hold on!! Progress is slow, but we are moving forward and faster than ever before. We have already achieved a lot together. You can also see this in the situation with Long-Covid. I think we saved a lot of people from getting a lot more ill, and the knowledge, and science, and the efforts of patients have certainly contributed to that. Patients have also ensured that biomedical research can now finally start in the Netherlands. There will be new guidelines in 2026 and old views are increasingly seen as untenable. Our commitment and our voices make a clear difference. Your voice makes a difference! Hopefully we will find a solution for ourselves and if not our voices will contribute to better opportunities for the next generations to come. Together we stand or lie stronger. We need you, so hold on!
I’m glad I can finally take a real break and turn off the lights again. Goodbye.
Follow #NIETHERTSELD here: https://linktr.ee/niethersteld
Literature about severe M.E.: https://docs.google.com/document/d/1vz38Vhl2qwIzA675ILoLN8MOAbVTQSgmvKasZUaAdkw/edit?usp=sharing