English translation of the transcript of the Dutch radio broadcast Focus, Wednesday 21 February 2018, the section 03:00 – 04:00 o’clock, the interview by Eveline van Rijswijk with Lou Corsius and Jeroen Kortschot.

English translation of the transcript of the Dutch radio broadcast Focus, Wednesday 21 February 2018, the section 03:00 – 04:00 o’clock, the interview by Eveline van Rijswijk with Lou Corsius and Jeroen Kortschot.

 

http://www.nporadio1.nl/radio-focus/uitzendingen/616484-2018-02-21?share=fd0c6&t=0

 

Transcript by Philip Corsius. Translation mostly by Google Translate with thanks to Anil van der Zee, amended by Philip.

 

Male announcer:

NPO Radio 1. NTR.

 

Female announcer:

Focus. With Eveline van Rijswijk.

 

Van Rijswijk:

Thousands of people in the Netherlands are chronically exhausted, without a clear, medical cause for it. Their disease is called chronic fatigue syndrome or ME. Psychologists claim that they can cure patients, but their treatment is usually ineffective according to their own data and some patients have even become more ill with psychological therapy. My colleagues from Focus TV will be broadcasting a comprehensive report this Thursday. Guests here today: Lou Corsius and the director of the TV broadcast, Jeroen Kortschot. Welcome, both. Lou, you are dealing with ME, because your own daughter is suffering from the disease. How is she doing?

 

Corsius:

Yes, that’s right. Our Céline has had this disease for seventeen years and she is currently twenty-seven years old. And she has gradually declined so far that she has now been home and bed-bound for the past two years.

 

Van Rijkwijk:

Yes. And you’ve been reading about that illness with the notion: I want to know what I can do for my daughter.

 

Corsius:

That’s right. Precisely because there is so little to be done about it in the Netherlands and because gradually there are also some signs from abroad that there is something else going on, have I been reading about it. I am also a health scientist, so I started reading foreign research and Dutch research.

 

Van Rijswijk:

Yes. We will also listen to Céline and her experiences with the disease.

 

Audio clip of Céline Corsius:

Sometimes, people say: I wish I could lie in bed all day. But that is not nice at all, because I am in pain everywhere and I cannot find a good position to be in. And everything is unpleasant, any mattress, it doesn’t matter.

 

Van Rijswijk:

When I hear that, I think: there is a lot of incomprehension for Céline.

 

Corsius:

Well, we’ve certainly had to deal with a lot of misunderstanding over time. And that applies both in the medical world and in all social contacts that exist. People don’t understand what is going on at all, so even within our own family, there are some people who have doubts about the illness she has.

 

Van Rijswijk:

So, for seventeen years, perhaps, she has been dealing with that incomprehension?

 

Corsius:

Exactly, and that is also one of the factors that makes it even tougher for her.

 

Van Rijswijk:

Yes. What I’m wondering is, because it is a very complex illness … What is said that might be causing it, how is it defined? Can you say something about that?

 

Corsius:

If you look at the Dutch scientists at the Dutch Knowledge Centre for Chronic Fatigue [elsewhere in this interview abbreviated as NKCV (for Nederlands Kenniscentrum Chronische Vermoeidheid) – ed.], they assume that there are false illness beliefs, so people have a wrong notion about the fact that they would be ill. Incidentally, that is complete nonsense, which we have also demonstrated in our research. What they assume, is that people did at one point suffer from a viral infection or something like that, and then continue to feel sick. And because they continue to feel sick, they are inactive and that would contribute to the perpetuation of the illness. Additionally, for example, we as parents would also be regarded as a factor in perpetuating the illness.

 

Van Rijswijk:

Yes. So, causes are being talked about, but the process from then on, what makes it chronic, it has been alleged that it could all be in their heads, to put it bluntly?

 

Corsius:

Exactly. And fortunately, there are now developments abroad, especially in Japan, in Australia and in the United States, which show that there might be something else entirely going on, and that there might indeed be a disorder in the metabolism of the cells of the body of the patients. And then, you are suddenly talking about a very physical cause.

 

Van Rijswijk:

Yes. I want to come back to that. I want to ask first, before we go to Jeroen, how has she been treated [literally: “handled” – ed.] for her symptoms in those seventeen years?

 

Corsius:

Er…

 

Van Rijswijk:

How many therapies have come and gone?

 

Corsius:

You know, the first word that comes into my mind is ‘abused’ [literally: “miss-handled” – ed.], but er… When she had been ill for about three years, we deliberately sent her to a rehabilitation centre. At the time, I was working in the rehabilitation sector myself and I was convinced that with a rehabilitation treatment, she would be able to improve. So, at that point she was treated clinically for three months in a rehabilitation centre, but in the end, she came out of that much worse. Otherwise, we are looking for treatment mainly abroad, because in the Netherlands you only run into incomprehension.

 

Van Rijswijk:

Yes, according to the official guideline, ME is seen as a psychological illness. Doctors assume that there is nothing wrong, physically, but that patients should be helped psychologically. Jeroen Kortschot, director of the episode ‘Inexplicably tired’, what did you encounter in the research on this subject? What has surprised you?

 

Kortschot:

Well, what surprised me is that psychologists are punching above their weight, if I may say so. They don’t know what’s going on, doctors don’t really know what’s going on, but they do formulate theories about what they think is going on. And what they’re saying are actually unprovable things. They say: well, this person is feeling sick, and apparently, they can think themselves better. But if you ask: how does it work, in the brain, how can someone think themselves ill and how can someone think themselves better, if they are treated by you? They can’t explain how that works. And when I say: you say that it is all in the mind, then I’m reproached for Cartesian thinking. Then they say: yes, but you see the soul as too separated from the body, that is old-fashioned. They constantly give you arguments that distract you from the case. Look, it’s kind of logical that people who suffer from an illness of which no one knows how it originated, what it is, of which we do not have a clear picture of: yes, you have ME or you are chronically fatigued – it is very complicated to make the right diagnosis – those kinds of patients traditionally end up at the psychologist. The counsellor, so to say. Like: well, go to the psychologist, see if you can learn to live with the illness, more or less. And that is good in itself, but somewhere along the line, psychologists have started thinking: oh, now we can take over and we can heal those people. But I think the most that psychologists can achieve in at least a large proportion of these patients is comforting. And a little bit of learning to live with the symptoms.

 

Van Rijswijk:

Yes.

 

Kortschot:

And yes, try to keep life as endurable as possible for those people. That’d be quite something already. But the whole notion that by thinking differently, you could cure this horrible illness, seems to me – after two months of study – absurd.

 

Van Rijswijk:

Yes. There has been a big study on how this could be treated and there are actually a lot of psychologists who have embraced certain therapies, of which it is said: well, that works. What treatments have been prescribed based on that research?

 

Corsius:

I assume you are referring to the PACE Trial in the UK?

 

Van Rijswijk:

Yes, can you explain what that is?

 

Corsius:

Yes, the PACE Trial was indeed a very large study, with 641 patients.

 

Van Rijswijk:

This was in 2011, I think, right?

 

Corsius:

It was published in 2011, indeed, in The Lancet. And in that study, it was said that cognitive behavioral therapy, that was one, CBT, and graded exercise therapy, the gradual building up of activities, that these would be the appropriate therapies to achieve improvement.

 

Van Rijswijk:

Yes.

 

 

Corsius:

And in their research, they also said that that was proven.

 

Van Rijswijk:

So, that was actually for the first time – just summarizing – for years this has been a thing, that chronic fatigue syndrome exists, what should we do? And that was perhaps the first time it was said: this has been scientifically proven to be a treatment for that syndrome.

 

Kortschot:

Yes, we are going to talk to those people. We are going to give them insight into what we think is going on with those people and then we will come to the agreement: you can walk for five minutes today and tomorrow you can walk for six minutes and the day after tomorrow you can walk for seven minutes. That is the core of that exercise and that is also the hot potato, because that psychiatric treatment is not that bad in itself, because then you can teach people to deal with their symptoms. But it is mainly about that exercise, of which there are clear indications that this is harmful in some patients and leads to a decline. With your daughter, too, right?

 

Corsius:

Well, we assume that for Céline, the rehabilitation has contributed to her deterioration. And as far as the PACE Trial is concerned, you can also say that quite a lot of commotion has arisen, because it turns out that the researchers have changed their outcome measures halfway through the research.

 

Van Rijswijk:

Yes. Can we briefly list: what was wrong with that research?

 

Corsius:

That really is a very long list.

 

Van Rijswijk:

The most important things, then?

 

Kortschot:

You can say in general, because the worst thing is: that PACE Trial was a scandal. Because they were planning… They said in advance: okay, if you score this on a score list of fatigue and pain and exhaustion and such, then you’re healed. Well, when this didn’t yield the right results, they said: well, okay, you know, if you score this, then you are healed. They did that during the study. Well, that is scientifically a mortal sin, but apparently in psychology it’s possible. So, they just did it. That only became apparent after they had been forced by the court to make their data public. So, patient associations went to court in the UK with an appeal to the British law on the openness of research and they have revealed this. So, they had not been honest about that. They had tried to conceal it. Well, there are all kinds of outcome measures that have been swept under the table, or swept under the carpet, apparently because they did not work out well, for example an objective measurement of how much people move with motion monitors. It is not known what it actually does. They never surfaced with PACE, did they, these motion monitors, as yet, or er…?

 

Corsius:

I don’t think so, off the top of my head.

 

Kortschot:

Well, and they don’t want to give that. So, they have measured them, but they do not want to share the data. That is all pretty suspicious. Well, and we also looked at some Dutch studies that are given to us by the psychologists, of which they say: just look, this is our research, just look at this, this is correct. And what you see, is that when it comes to: which patients do you take in your group? That is a very heterogeneous group. These are also people who have been treated for cancer, for example, or people who have rheumatism, or people who have very different illnesses than ME.

 

Van Rijswijk:

With fatigue as a result, but not…

 

Kortschot:

Exactly. They are in it. Next, they look at: okay, when is someone better and when is someone sick? Well, there are all kinds of overlapping criteria. To give an example: if you score 35 on a certain scale, then you’re dead tired, you cannot function. And if you score 34, you’re perfectly healthy and then you are healed. Or so they say. Well. And that is with a questionnaire with seven questions or something.

 

Corsius:

There was another one, Jeroen, that was a pretty one. In that PACE Trial, at one point one of the entrance criteria was, that you had to score 65 on a scale on which the physical functioning was indicated. But at some point, they could not get enough patients to participate in the study and then they reduced it to 60. But then, in the criteria to be healed, so in fact a lot of patients were already – that difference between those 60 and 65 – they were already healed in advance.

 

Van Rijswijk:

So, on that basis you could say: that’s wrong about the research, so the patients, the outcome, the reporting of feeling better or not…

 

Kortschot:

And then there is one very important one, and that is that people drop out with that exercise. Sometimes as many as 30 percent. They no longer participate in the research, they quit. Nowhere in that study can be found what happened to those people. That they have phoned them, like: why do you stop? Because these people could very well be the Céline Corsiuses, who would get sick and say: hey, I quit, this is making me ill. Bye. And nowhere in that study do you see that the researchers called those people or visited them to ask: why did you leave the study?

 

Van Rijswijk:

So, actually, that study might provide useful information for a limited group, but actually concerning that very large group of chronically fatigued people, it provides bad advice and even advice, like in the case of Céline, her treatment, that has a bad effect on her?

 

Kortschot:

Yes.

 

Corsius:

Exactly. And that is a danger that psychologists in the Netherlands simply deny, but they have nothing that they can prove that with.

 

Kortschot:

No. The arguments are not very strong. And I must also say that in psychology – so of course I submitted this to people who also do critical research in psychology, there are a number of projects that are trying to do a replication study, trying to repeat all kinds of psychological research to look at whether it is good… When I tell them that for example twenty percent of the people drop out and are not called, they say: yes, yes now that you say it, you’re actually right, that’s actually an issue. But that does not seem to be the case in psychological science at all, that this is indeed a problem, if you might make people sicker.

 

Van Rijswijk:

After REM’s Wanderlust, I will continue talking to Lou Corsius and Jeroen Kortschot about chronic fatigue syndrome. See you soon.

 

[REM – Wanderlust can be heard.]

 

Van Rijswijk:

I’m talking to Lou Corsius and Jeroen Kortschot about chronic fatigue syndrome. We have just talked about what it is, and the research that has been done about it which is not entirely right, and that we are actually in the middle of a huge discussion about chronic fatigue syndrome and treatments. A lot of treatments have been shot down, but there are still psychologists who argue for behavioural therapy and one of them is psychologist Bleijenberg. We’re going to listen to him.

 

Audio clip of Gijs Bleijenberg:

You’re not hearing me say, that this is the only and the best solution, but at the moment this is the only treatment that has shown effectiveness countless times. We visited people who were bedridden at home, we also offered treatment, but they did not want treatment. I think because the fear of losing what they had now, which is a stable situation, and I can understand that too, to lose it.

 

Van Rijswijk:

That it has worked countless times, he says. But also: fear of losing what they have. That seems like a serious statement when I look at you?

 

Corsius:

Yes, it is really incomprehensible that he dares to say this, dares to make such a comment. Because it is based on nothing. We see the effect on our own daughter. We have tried everything in terms of activities, rehabilitation therapy, to make it better and then he still comes up with such a comment. And besides, he says: it has been demonstrated time after time. If you look at the Dutch research centre for chronic fatigue, it shows that they have not been able to demonstrate the connection between the level of activity and fatigue.

 

Van Rijswijk:

Can you explain that?

 

Corsius:

Yes. They have done all kinds of research where they have looked at both physical activity and measured fatigue, indicating that people who have followed cognitive behavioural therapy with a stimulating program, show less fatigue, but that their level of activity has remained the same. So, that this connection is not there. While that is what he keeps basing himself on.

 

Van Rijswijk:

Because it’s about behavioural therapy. And this behavioural therapy consists of giving advice, or talking about: how much can you handle, in terms of exercise and activity?

 

Corsius:

During this behavioural therapy, the patient is stimulated to gradually build up and to make agreements, which he then has to adhere to, to maintain a certain activity for a longer period or to do it with more intensity.

 

Van Rijswijk:

Even if that person is actually feeling very poorly, that agreement must be kept?

 

Corsius:

Yes. And that is actually contradictory to the original concept of cognitive behavioural therapy. According to that, you take the patient into account. But in this specific form by the NKCV, it is always built up and he must keep it up.

 

Kortschot:

Yes. And those patients might be saying that they’re feeling a little better, you often see that, in therapy, that people talk along with what the therapist’s intention is. But if you look at the measurements of how they feel, then they’re still feeling – or how they’re behaving, I mean, sorry, then they’re feeling just as bad. Because they’re not moving more and they don’t become more active. So, it’s not helping.

 

Van Rijswijk:

And is that not the big problem with self-reporting in general? And do you see a solution for that? What can you do about it?

 

Kortschot:

You, do you see a solution for that?

 

Corsius:

Well, self-reporting in general – again the NKCV has published a number of studies, including one in 2009, in which they themselves say: the self-reporting instruments do not comply with objective measurements. The best instrument corresponded for 70 percent with what it really was. So, in 30 percent of the cases, it predicted it wrong. Well, what the solution is, is: do measure with the resources you have to measure it well, namely with an actometer, motion monitor. And then you will see, that the patients aren’t improving one bit.

 

Van Rijswijk:

Yes.

 

Kortschot:

Yes. I honestly think that many of those patients… You first have to make a kind of distinction in people who are really as ill as Céline is. Because there are undoubtedly people who have Crohn’s disease, who have rheumatism or who have MS, who benefit from cognitive behavioural therapy and who are probably not going to become more ill. So, you have to find a way to distinguish the people who really have ME. And I honestly think: the only way of therapy is: very intensive, with a lot of expertise. And see what a patient can handle and why he does not do certain things, see if that is a physical thing or maybe fear of movement or something. But that is very intensive. And very expensive. And I have the impression that this might be part of the issue. That people are actually fed up with those patients. Because they’ve all been under the scanner four times and they’ve already had blood tests and… In a sense, there is a kind of atmosphere of: it should be over now, because we can’t find it and there’s nothing wrong. And then there’s a tendency not to throw in five therapists once again to finetune that treatment with people, but I think that’s what needs to be done.

 

Van Rijswijk:

Yes, so in a manner of speaking, some people might have to undergo ten therapies to find out: what works well, what does not work?

 

Kortschot:

Well, in any case, in any case, it must be ensured that they do not grind themselves into the dirt, so to speak. Because that does happen. Often young people. They may have additional psychological symptoms, but they want to. Céline wanted to improve when she was seventeen. She really did want to live. In the broadcast, we have a dancer of seventeen, no sorry, a dancer of thirty-five and he really wants to dance again. I have spoken to all kinds of people and I have visited them, too. Young people with ME. There is no question that they act from a kind of disease profit, which is what psychologists are saying, because they get so much attention all day, if they stay in bed and drive around in a wheelchair and go to the mytylschool [special needs education – ed.], while before they were at VWO [the highest level of Dutch high school – ed.]. Those people do want to, only: you have to guide them well.

 

Van Rijswijk:

You’re clearly criticizing those psychologists who are still sticking to that therapy and are therefore indeed saying things like: there is such a thing as a disease profit… What reactions do you receive? On your criticism?

 

Corsius:

If you look at, for example, Bleijenberg who just spoke, and also Van der Meer, his colleague, they’re saying: it is a small, militant group of patients who provide unfounded criticism. Well, in the meantime: it is not a small group of militant patients, because in the meantime there are a lot of scientists abroad who level the same criticism at them. And unfounded? I would say no way, because we have just delivered an article, Mark Vink together with doctor Simin Ghatineh has just delivered a devastating article about the FITNET study, Professor James Coyne in America has just written a devastating article on one of their publications… So, although the people at the NKCV always try to say: there is no well-founded criticism – there really is.

 

Van Rijswijk:

Yes. So, you get support from the scientific world. I mean: of course, science is always in discussion, but the Dutch [– ed.] Health Council has also weighed in. Or actually, they have not yet spoken, they are working on it now, the advisory body of the government, which has initiated an investigation into the treatment of ME. They have been working for three years. What is your view on that?

 

Corsius:

Yes, in my opinion… I think it’s a pity that they felt they had to do a repeat of the report of the Institute of Medicine in the United States, because that was a very thorough report. In it, many scientists claim: it is a serious, complex, physical, systemic disease. They have done that investigation over now. They took a lot of time for that. And I assume, that they will have to come to the same conclusion.

 

Kortschot:

Yes, the messages that are reaching me from that committee… So, they have been busy for three years now, right. A Health Council spokesperson told me that he had never experienced this, that there is a special committee that cannot reach an agreement on a particular topic for three years. The people I have spoken to, say that the Institute of Medicine report, which recognizes the case that patients and their families make, that it is a separate illness and that cognitive behavioural therapy with graded exercise can be dangerous, they will probably be writing that, too. However: there are also a number of members in that committee, psychologists, who oppose this. And that is very annoying for the Health Council, because they want to give unambiguous advice. They have been fighting for three years and the Health Council has said that they will publish a report in the spring of 2018. I’m very curious. Because I think, they haven’t been in agreement so far.

 

Van Rijswijk:

So, that also shows that there is a fight within the Health Council and especially on the psychological side, where behavioural therapy is of course popular for many other disorders, to criticize that. What will happen now? Where do you see possibilities? Are there new, hopeful treatments, medicines? What do you think?

 

Corsius:

Well, I hope a few things are going to happen. I hope that in any case the guidelines in the Netherlands will be changed. That these treatments are no longer listed as the best possible. Because that also has consequences for the social insurance laws, in which patients are in fact forced to undergo this treatment. That is one. In addition, I hope that a diagnostic test will be found in a fairly short time. Professor Ron Davis at Berkeley University in California, among others, is working on that and there are people working on it at Griffith University in Australia. That would be step one. And step two is then, to search for medication that can influence that cell metabolism.

 

Van Rijswijk:

Yes. You mention cell metabolism. Because that is a possible indication, a physical indication of how the illness works?

 

Corsius:

Yes. They have discovered something strange in Japan, Australia and America, which is that the metabolism in the body’s cells themselves is disturbed, and that energy conversion is incomplete and that instead lactate is produced in every cell. And lactate is lactic acid, the same substance that you develop in your muscles when you over-exercise. This leads to muscle pain and ineffective use of your muscle cells. Well, you can see that happening in every cell in the body. You can imagine what kind of problem this causes in these patients.

 

Van Rijswijk:

Yes, so that could be a good indication that this causes the disease? And it can offer a solution for that?

 

Corsius:

Well, whether it is the cause of the illness or a consequence, but it could at least be a starting point, to search further and deeper from there.

 

Kortschot:

Yes. I have to say: in the Netherlands, fundamental research is also being done. Among others, by Van der Meer, who has joined the psychologists in part, but who is still – that is double-edgedness of the whole thing, is not it? They say: it’s in the mind, but we’re just doing some fundamental research just to be sure, to see if we can find a cause. What we have filmed and what is also in the broadcast is the notion that these problems with the cell metabolism may be caused by our immune system. And specifically: the immune system in the brain.

 

Van Rijswijk:

Yes. Then we are back to the name: ME. Right? Because that’s what’s been talked about, that it’s in immune cells.

 

Kortschot:

Yes. Chronic inflammation of the brain. And those immune cells in the brain are fascinating, because they have recently been associated with all sorts of ailments, including schizophrenia, Alzheimer’s, and maybe also ME. And if we can find that, then a diagnostic test might be closer and perhaps also a treatment.

 

Van Rijswijk:

Yes. Well, let’s hope that they find one. In the meantime, your daughter will have to live with this. Is she currently being treated in any way?

 

Corsius:

She receives treatment from a specialist abroad. But that is mainly aimed at minimizing the negative effects and does not really address the cause, because there are no resources for that at this moment.

 

Van Rijswijk:

So, that’s basically to make her life more bearable?

 

Corsius:

To make her life more bearable. To ensure that she can at least participate in life with us a little bit. But that is already minimal.

 

Van Rijswijk:

Yes. Jeroen, what is your view on this? The people you spoke to, what ways do they find to make life as bearable as possible?

 

Kortschot:

Well, that’s what’s keeping me awake at night. In many of those patients, er… It has been incredibly moving for me, to get to know Céline and her parents. I have great admiration for people who, because they have immersed themselves in science, know that it is still far away, a cause and a medicine, and yet struggle with their ailments and try to be there for their loved ones. It’s really, when you… Let’s just say the serious cases are really severely disabled and very sick. I have read a report from a review committee for euthanasia, for a woman who desired euthanasia a few years ago. That was a very short assessment by that review committee. Those people were completely convinced that in this case, there was unbearable suffering and that it was hopeless. Yes, unfortunately that is the reality for an unknown group of patients.

 

Corsius:

To respond to that: if you compare that with Gijs Bleijenberg’s statement of: those people are comfortable and they find it nice to stick to their current situation for a while, then that is in stark contrast to each other.

 

Kortschot:

Certainly. Yes. That is something very different, yes.

 

Van Rijswijk:

Let’s hope that we find out where this comes from and, above all, how we might treat it. Thank you very much for being here. This Thursday at nine twenty-five: Focus, all about this chronic fatigue syndrome.

 

[End of the interview and of this subject in the broadcast.]