Trial By Error: Celine Corsius–In Memoriam

By David Tuller, DrPH

Céline Corsius, a 32-year-old from the Netherlands, died through euthanasia on September 18th after suffering with ME for 22 years. For the last seven years, she was confined to her bed, lying in the dark. Even so, her health situation continued to deteriorate. She was cared for by her parents, Iselle and Lou Corsius. Below I am posting translations of the eulogies given by Iselle, Lou and Celine’s brother Philip at a memorial service held yesterday—September 30th. A recording of the event will be viewable for a month at this link, with this viewer code: A3AA4367.

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Iselle Corsius

Dear friends and family,

We would like to welcome you to this funeral, including all online participants.

First of all, we would like to express our gratitude for the overwhelming support that Céline and we have received in recent months. We had many messages, cards, letters, flowers and gifts: heart-warming and very valuable to us.

The fact that people acknowledged her health situation and her euthanasia decision was very important to Céline.

In a moment I will tell Céline’s life story.

Lou will discuss how the disease ME is viewed in the Netherlands and what the consequences have been for Céline.

Philip will bring back fond memories of Céline.

Céline has selected all the music for this occasion. We will introduce the songs briefly and 4 recordings of Céline’s own music performances will be presented.

The music we have just heard is Comptine, music from the film Amelie.  Céline thought this sad music matched her life in recent years.

Céline was born 32 years ago as a Sunday child. Cheerful, frisky, enterprising, creative, musical, eager to learn.  She had a fantastic future ahead of her.

On holiday in France in 2001, when she was 10 years old, Céline became very ill, with high fever and a sore throat. We called it getting rid of a virus. But she did not recover well, she did not become as energetic as before.

That winter she contracted pneumonia and subsequently she remained tired. The doctor discovered that she had suffered from Pfeiffer disease.

Because she was not getting better, we ended up seeing a paediatrician in Utrecht in 2005. She found that Céline had CFS, chronic fatigue syndrome. The appropriate treatment would be rehabilitation: gradual increase in activities in combination with cognitive behavioural therapy. This therapy assumes that it is not an event itself that determines what you feel or do, but the way you think about it.

At the rehabilitation center in Tilburg they promised Céline that she would make a good recovery within a few months. We were so relieved and optimistic.

But already in the first week it became apparent that outpatient treatment was too much of a burden for Céline. She was admitted to the clinic and to begin with, a search was made for the so-called Zero Point, a level of activity at which she could function without problems. However, this point was not found and it was decided to simply build up activity.

Céline was taught not to listen to her body’s signals and to do her best to think differently about her situation. She had been ill, but not anymore.

She wanted to get better so badly that she went to great lengths to meet all expectations.

When Céline was diagnosed with ME, myalgic encephalomyelitis, after many years, it turned out that the main characteristic of this condition is exercise intolerance, which means a very limited ability to exertion, followed by slow or non-existent recovery or even deterioration.

Céline, meanwhile, came to the conclusion that she was just imagining herself exhausted and overloaded: she was therefore a poser, an impostor. No wonder she felt abandoned by everyone – including her parents. She felt completely alone.

Over the course of more than 3 months, Céline continued to deteriorate, until the rehabilitation doctor said that it was her her puberty that was out of control; we might as well go to the butcher. He wrote a referral for the child psychiatrist.

The psychiatrist diagnosed her with depression and prescribed medication and therapy.

Because school work had come to a standstill, Céline had to repeat the third year. The school made it possible for her to follow an adjusted schedule, and in 2010 she obtained her pre-university education diploma.

In the meantime, Céline had increasingly battled with her body, which resulted in an eating disorder, a desperate attempt to control her physical condition with the benefit of revealing that she was not doing well at all.

In the summer of 2010, Céline was admitted to a clinic in Leidschendam. There she was treated as a regular anorexia patient. The starting point was: you feel tired because you are underweight and because you are malnourished, you can no longer think and feel properly. So we are going to work towards a healthy weight. Stomach pain and digestive problems are part of it, serve yourself well and finish your plate.

It was only much later that we discovered that Céline had gastric paresis, a seriously delayed stomach emptying, so that she could only process small portions of food at large intervals. Her food intolerances and severe intestinal complaints also turned out to be characteristic of ME.

After 7 months back home, Céline did everything she could to make her big dream come true: pursuing a music education.

In the summer of 2011 she was admitted to the conservatory, Pop and Jazz Singing Department, in Utrecht. How very happy she was!

She found a room in the centre of the city and she received permission from the department to study with half a program.

Right from the start it became apparent that even 50% of the study load was asking far too much of her. Actually, the short bike ride to the conservatory building was already too much. After taking a class, she had to go to bed for the rest of the day.

Despite all the help from Philip and us, to her immense sadness she had to give up at the beginning of 2012 and returned home completely devastated.

Later that year, the diagnosis of ME was made in the CFS/ME centre in Amsterdam.

ME was recognized as a neurological disease by the World Health Organization in 1969. Céline’s many and varied complaints fit exactly within the criteria. ME turned out to be something completely different from chronic fatigue.

Céline now spent a large part of the day on the couch or in bed.

The eating disorder became increasingly prevalent, so that in July 2013 she was admitted to the clinic for eating disorders in Goes.

And although the diagnosis of ME had already been established, Céline was treated here also with a total ignorance of ME. Care providers used the psychosomatic view and unquestioningly equated ME with Chronic Fatigue.

Her primary care provider assured her that she did not want to take ME away from her and made comments (without our consent) that would resonate with Céline for years to come:

Your parents just think you’re pathetic.

It’s time for you to stand on your own two feet, so that your parents can be together again.

The treatment failed and in April 2014 Céline returned home seriously depressed.

Three more psychological processes followed, the last of which was at home. Finally Céline could no longer have these kinds of conversations. Sitting upright for half an hour, concentrating, listening and speaking became too strenuous.

To her surprise, ending psychological treatment turned out to be very positive. No longer anyone  would put her ME diagnosis aside nor would encourage her to think positively and build up activity.

In combination with the increasing knowledge about the ME, Céline very gradually began to realize that she was not a poser or a cheat after all. She was indeed ill, suffering with a serious disease.

In this way, Céline improved psychologically, while she continued to deteriorate physically.

At the end of 2015, she became mainly bed-bound and dependent on our intensive care.

To distribute her efforts and digestion as best as possible throughout the day, we stuck to a strict daily schedule.

Céline was optimistic about the progress of science for a long time, as all kinds of biomedical abnormalities were found in ME patients. She bore her lack of autonomy, independence, her suffering and burden with an unimaginably positive attitude to life and a great sense of humor.

She cherished her dreams of the time that would undoubtedly come and for which she had modest wishes. Then I can meet people again, I can go outside again, I can shower myself. She was working on her guest list for a grand comeback party.

Her physical strength continued to decline, she experienced increasing pain and discomfort.

The slightest physical, cognitive or emotional effort became too taxing.

Her life stood still, took place in bed, in a darkened house, with hardly any social contacts, without any prospects because due to a severe lack of financing, a diagnostic test and treatment options for ME failed to be found.

Céline increasingly wondered whether and how long she could continue this life. And one day in February 2023, she asked us whether euthanasia could be an option for her. From her perspective we could completely understand her wish. This was a huge relief for Céline. She immediately created a Playlist Funeral in Spotify.

It was Céline’s wish not to be laid out. She wanted to be cremated before the memorial meeting. She chose this photo (on stand) for the funeral card. She cherished this image where she was camping with us in 2013, in her favorite holiday country Italy.

She liked to share her longing for a holiday with fellow sufferers through photos on Facebook.

Céline wanted this photo of the Amalfi Coast in Italy on her urn.

On Monday morning, September 18, she said goodbye to us in peace. We now know that she is in the right place, because for our wedding day, September 20, she sent flowers and a card with lots of love from heaven.

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Lou Corsius: The way ME is viewed in the Netherlands and what it meant for Céline

What I am about to say now, is at the request of Céline.

I will start with two quotes from the report of the doctor, a professor of psychiatry, who provided the second opinion in Céline’s euthanasia process.

For Céline, this doctor’s report finally represents the full recognition of her illness.

His first observation: “The patient has very serious, progressive ME-CFS, as is also recorded in the documents.”

The second important point in the report is the recognition of the fact that the treatment used, which consisted of cognitive behavioral therapy and an activity building program, led to damage.

He wrote: “The patient has been treated in the past for depression and anorexia nervosa, which can be regarded as secondary to the ME-CFS and the rehabilitation treatment.”

The scientists who claim that psychosocial factors are the cause of the disease insist that their treatment is not harmful. But they haven’t done any serious research into that. They measured hospitalization and doctor visits as so-called negative consequences of treatment. We all know that those results do not demonstrate the deterioration, wich is much more insidious.

If you do not include objecive measurement outcomes such as actography in your research results, you will not see that the patients activity is declining.

To show how absurd that is, I’ll make a short excursion. I will come back to what this meant for Céline later.

Two years ago, together with two other patient representatives, I spoke to a professor in Amsterdam. We discussed his research into his treatment of Long Covid patients. That treatment is based on the same outdated assumptions as those regarding ME or CFS.

This study only includes the results of self-completed questionnaires, with fatigue as the most important outcome.

They also used actography, but the results have not been published. These results were very disappointing. You would expect that someone who has been treated successfully would be able to do more, be more active. But that’s not true. In many cases, activity declines after treatment.

“Why are patient organizations so obsessed with objective measurements?” he asked us. “Objective measurements are also subjective. They depend on how you interpret them. We measure how the patient feels and that is important. In previous research we have shown that there is no connection between the objective measurements and the self-completed questionnaires.”

There is no connection, he says. So based on a slightly less poor score on a questionnaire about fatigue, which you complete after you have been continuously told during therapy that you should not pay attention to your fatigue, he claims that patients have recovered, while the objective measure (how much one does during a day) shows that they have not improved or have actually deteriorated.

Now back to Céline.

For her, the mistreatment, as she called it, led to very serious damage; as a result, she suffered a significant physical decline during her admission to the rehabilitation center. She also suffered from severe depression as a result of the treatment. The constant denial of her increasing complaints led to anorexia.

In the Netherlands we are still dealing with a misleading image of the disease. The patient may have been ill, but that is no longer the case, they say. The patient (and those around him) maintains the sickness through unhelpful thoughts. The patient moves less and therefore deconditioning occurs.

As a patient you are not allowed to listen to your body, because you have left your illness behind you. You need to shift your focus.

What do you think is the impact of this approach on a 14 year old who feels she is seriously ill? She feels that she cannot make the required efforts, but she should not take that seriously! Céline was taught that her complaints were not real. She had to ignore what her body told her. Those signals were false. And according to the therapists, she was not motivated.

Céline completely lost confidence in her own body and in what she felt. She was completely destroyed physically and psychologically. That has had an effect on Céline for a long time. She felt ashamed for years because she was ill, while according to these experts she was not ill.

The image of this serious disease has been changing gradually for a number of years now. These changes can be seen all over the world. In the United States, the 2015 IOM report was released that clearly states that this serious multi-system disease is real and not a figment of the mind.

In March 2018, the Dutch Health Council issued their advice on ME/CFS. This advice is in line with the IOM report. The same professor I spoke of earlier, resigned from the committee shortly before the advice was announced. He didn’t agree.

These advices were of great importance to Céline. She was no longer ashamed of her illness.

– In March 2018 she dared to tell her story in the television program Focus.

– Only recently (four weeks ago) she contributed to the Argos radio program. That program focused on the awarding of grants for biomedical research into ME/CFS by ZonMw. ZonMw is the governmental institute that awards subsidies for healthcare research. As a result of their actions a lot of research money is awarded to those who promote the psychosocial approach.

The new ME/CFS guideline was adopted in Great Britain at the end of 2021. Cognitive behavioral therapy and gradual increase in activities are no longer recommended and are even discouraged. The quality of evidence for these treatments has been qualified by the NICE guideline institute as low (11%) to predominantly very low (89%).

The same scientists who continue to pushing misleading claims about the disease have protested against the British guideline. They also have a seat on the committee that will determine the next guideline in the Netherlands. That worries us very much.

This year we protested with patient representatives against the state of affairs at ZonMw. ZonMw has awarded millions in subsidies to the ME/CFS Lines consortium of a professor who has been promoting for years that chronic fatigue syndrome has psychosocial causes.

After 4 years of intensive involvement, I resigned as a patient representative from ZonMw’s ME/CFS biomedical research program. I have completely lost my confidence in ZonMw. All promises made to patient representatives have been violated.

During discussions about the course of events in January this year, a director of ZonMw said to me:

“We are working very hard on your daughter’s health.”

Well, ZonMw, you no longer have to work very hard on Céline’s health.

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Philip Corsius

Apparently I’m more than two years older than my Sister, but I can’t really remember a time before Céline. I feel like she’s always been there. We grew up together, of course. I have many good memories of that. Today I want to share a few impressions, from our childhood, from our time as young adults and from recently.

During childhood, as brother and sister, you are almost contractually obliged to have a nice ‘quarrel’ every now and then. We got along really well, so our disagreements were kept to an absolute minimum. Every night we were put to bed and Dad or Mom read to us. Usually there was also The Story About Us, in which the experiences of the day were presented in a comical way. When Mama and Papa went downstairs afterwards, Céline and I continued the stories from our own bedrooms. We made up all kinds of things to make each other laugh. Much more fun than going to sleep.

Anyway, Céline was good at making me laugh. Our energy had to be released every now and then and playing around was a suitable outlet for that. Céline was much sportier than me – it was not without reason that she looked up to Sporty Spice – and she was the one who always won. I found that very funny every time, which made me laugh and therefore lose even faster. Well!

Even outside the home, Céline was the one of the two of us who would take care of everything. At a fairly young age, she cycled independently to the shopping center with a friend, years before I would even come up with the idea of driving that far myself. When we were at a campsite in France again in the summer, Céline made friends in no time. In the meantime, I was drawing safely in our own place. And when there was something to do on stage, locally or internationally, Céline went for it in good spirits. Céline was ahead of me, always went first.

We often did things together that didn’t require so much courage. If there were nice Happy Meal gifts available at McDonald’s, we didn’t each have to get one of everything, but we started a collection together. The two of us regularly played together, sometimes with Thunderbirds and other times with Barbies.

As a duo we have also produced all kinds of creative things. For example, in the attic in Etten-Leur there are cassette tapes full of radio plays and editions of Holiday Radio, our own program that we recorded before long journeys by car, so that the four of us had something to listen to along the way.

Shortly before we went to secondary school, the KSE, videos were added. During our time at the KSE we won prizes with short films that I wrote and directed and for which Céline composed the music and in which she often appeared as an actress. Whenever she gave a performance with YAM, in a band, or solo, I always made video recordings of it. Those performances always led to compliments, because Céline could sing fantastically. She accompanied herself on guitar or keyboard and half the time there was at least one song that she had composed herself.

At that time, her outdoor activities began to decline. Because Céline was home more often, we played computer games together more often, on the PlayStation or the Nintendo Wii. The choice of games again showed our shared sense of humor. The craziest games were the ones we picked. A game based on the animated film Madagascar was full of quotes that we shouted out at every opportunity. ‘I’m so proud… of myself! I taught him everything, you know.’ From Céline I did indeed learn to dare to go on adventures a little more.

After the KSE it was time to start studying. It didn’t surprise me at all that Céline was accepted into the conservatory. What was extra nice was that it was the conservatory in Utrecht, the city where I also studied, so after a while we both lived in rooms there, in different parts of the city. I regularly visited Céline in her room with the boiler making such threatening noises that we thought it would explode sooner or later. We then watched the British series Being Human, about three supernatural housemates: a vampire, a werewolf and a ghost.

After college I got my own life… and Céline didn’t, or at least not the way I had and have it. I felt very sorry for her. Fortunately, she was able to stay with our parents, the very best in the world. And luckily she had the cats there, Luuk and Lientje, and, starting with Dunya and Desi, a succession of guinea pigs in pairs and once even in threes. With support from Mom and Dad, Céline was the sweetest owner these animals could wish for. She loved them all.

And now, in recent months, Céline has been crazy about a new member of our family: Josephine, my newborn daughter with Rebecca. Josephine was born more than five weeks prematurely. I wonder if she was in such a hurry because she wanted to meet her aunt Céline. In the first half of this year, the question has always been which would happen first: her arrival, or Céline’s farewell? It was really fantastic to hear how happy Céline was with every photo or short video of Josephine that we sent via WhatsApp. I am very grateful that we had the opportunity to put Josephine in Céline’s arms for once, and that Aunt Céline was able to bottle feed her.

That brings us to today. Just as I can barely remember a time before Céline, I’d rather not imagine a time after Céline. But yeah. It will have to be done anyway. And living in the knowledge that Céline has been freed from all her pain and from that terrible disease is all in all better than a life in which she would continue to deteriorate every day. So I get it. I agree with her choice. And it’s typical Céline: she’s ahead of me, she’s the first to embark on this adventure. Although I seriously doubt whether I believe in it, I hope – if spirits exist, as in Being Human – that Céline will come and haunt me every now and then, and then enjoy the peace that she has been granted.