it's about ME

Transcript of TV program Focus NPO2 NTR February 22, 2018 Inexplicably Overtired

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Transcript by Lou Corsius      Translation by Lou Corsius with some help from Google translate

Director: Jeroen Kortschot

Hosts: Elisabeth van Nimwegen, Diederik Jekel

 

Céline Corsius

Light is on

Iselle Corsius

You might as well go to the butcher with this problem. It is an out of control puberty.

 

Lou Corsius

You have to become active again.  Just do it.

 

Jos van der Meer

People with chronic fatigue syndrome have not been well supported by the medical profession during the past hundred years.

 

Voice over

ME, also known as chronic fatigue syndrome is enigmatic to the medical world

 

 

Céline Corsius

….Sit down ….

 

Leader

Anil van der Zee

Eeh, old man poohh.

Voice over

This is the 39-year-old Anil van der Zee. At the request of Focus, he filmed himself because he is not able to have visitors. Anil is suffering from ME, he gets sick as a result of any effort, and has many other complaints without a clear physical cause. Anil has no other illness and is also not psychologically disturbed, but health care in the Netherlands only has to offer him the help of a psychologist.  Anil visits the toilet and the kitchen of his house once a day.  He can’t stand upright for more than a short moment. Too much light and even a little noise will make him sick. And once back in bed or on the couch, he has to rest for a few hours.

Voice over

Anil was a dancer by profession and topfit. But in 2007 he became ill and despite of a whole series of physical and psychological treatments, a young sportsman changed into a wreck. Attempting to fight against exhaustion did not help. He even became sicker. Until he got so sick that he had to lie flat almost all day and could no longer tolerate light and sound.  Anil is severely disabled, but the consensus is that Anil would keep himself ill as a result of false illness beliefs.

Anil van der Zee

You never feel completely normal, never! Every day you feel as if you have a flu and any little effort that is just a little too much worsens it fourfold, tenfold, is just eh and it is not that you feel tired after exercise, you feel really sick. That is really a big difference. Just, no, you can see it on me … I’m going to lose the thread again. I will stop for a moment.

Frans Hupperts

A very good friend, a very nice guy, who takes care of the groceries, that is also a big job.There is a group of people that cook in turns, then the food is frozen and then it is put in the freezer.

I made a bed here for him.

 

Diederik Jekel

In the bathroom?

Frans Hupperts

Yes, because the noise from the the children in the appartment above is so intense.

Diederik Jekel

And that walking and that jumping of children?

 

Frans Hupperts Frans Hupperts

Yes .. yes he just cannot have it, with the headphones even. So this is the only place in the house  where this noise is lower. So, and you can not forbid a child to walk back and forth.

Diederik Jekel

No

Frans Hupperts

And we are now looking if he can move to a quieter place with a lift. Well, that’s up to the municipality, that is, they are not very helpfull.

Diederik Jekel

That is really done by friends only. Isn’t there some kind of homecare or ..

Frans Hupperts

We once tried to get one hour of homecare to do the necessary cleaning and then we received a decision from the municipality that it was not in the interest of Anil that he would get help because that would impede his rehabilitation. Well yes, you know …

Diederik Jekel

Would cleaning up his house not be helpful to him?

Frans Hupperts

No, no, if he would clean and vacuum himself that would promote his recovery.  That is the answer we received. It would not be thinkable telling someone who is disabled and who is sitting in a wheelchair, go vacuuming yourself. Then you will learn to walk again. The whole situation is so absurd. Only because it is such a misunderstood group of patients and a disease that is not understood and in this way at this moment it will be approached completely wrong in my opinion. I have known Anil for 30 years. He is a very strong personality who wants nothing better than get up tomorrow and immediately continue his life.

Voice over

ME has been playing hide and seek for fifty years. Every time reserachers thought they found the cause, their results turned out to be incorrect.

Diederik Jekel

You have done many years of research, what candidate solutions did you encounter?

Jos van der Meer

It started with toxoplasmosis, then came Epstein Bar virus, then came the enteroviruses,

Diederik Jekel

Each time they thought eureka this is it, it just turned out to be a mistake… ?

Jos van der Meer

The tragedy is that often the original discoveries have been communicated too early without really any solid research, an impartial investigation, a second study, a second cohort, you name it.

Voice over

In the absence of a clear physical cause, ME remains in the field of mental health care.  A hundred years ago this clinic was built in Oegstgeest for the treatment of people with nervous weakness or neurasthenia as it was called at the time. First people were treated with electricity to make them stronger again, but then psychotherapy made its appearance.

Elisabeth van Nimwegen

What did the people who got here, suffer with?

Joost Vijselaar

Well in the first place from ehm severe fatigue and exhaustion symptoms. They could no longer handle ordinary life. It could not be shown with a microscope or the like. They called it a functional ailment and they treated it with physical means at first. But gradually, among other things, a treatment through hypnosis was implemented, in which the ailments were talked away during hypnotic sleep. They also started to get into conversation with the patients and that gradually developed into psychotherapy. And then the explanations were much less sought in biology, in the nerves themselves, but in the psyche and then it gradually changed from the neurasthenia, wich it was called at first, into psychoneurosis and then into neurosis and that became a psychological phenomenon, a psychological ailment with often psychological symptoms.

Voice over

And still psychology is the prescribed treatment. At the Dutch knowledge center for chronic fatigue at the AMC in Amsterdam, they assume that physical treatment is pointless and only the psychological treatment will help.

Gijs Bleijenberg

A person with chronic fatigue syndrome has long history.You know, the definition also indicates, it has been at least half a year. And that is where the patient got entangled in so that he cannot get out of it anymore. It started with an .. often a biological cause.

Diederik Jekel

But the biological component is gone in any case?

Gijs Bleijenberg

The original … the original reason is gone. It is no longer active.

Diederik Jekel

And with cognitive behavioral therapy, how much can one achieve? Can one completely cure people in that respect?

Gijs Bleijenberg Gijs Bleijenberg

Ehm …. people can reach their goals again.

Voice over

Firm practice and help from a psychologist, with which you can overcome ME and chronic fatigue. Ilse Schoonderveld did not have ME, but was chronically fatigued. She is convinced that she has overcome her physical complaints with positive thinking.

Ilse Schoonderveld

Everyone is tired, but when you are chronically fatigued then anything is too much. And then you can’t imagine drinking coffee with the neighbor, for example, then you are sick, then you are physically sick. Or you go to the supermarket. For example, I still had to go to the supermarket and all those images came flashing along and you think … I felt as if I had to vomit and I walked, sometimes I took my children to the supermarket .

Diederik Jekel

You were really nauseous

Ilse Schoonderveld

Yes! I took my children and then I held on to the cart and then I just looked down at my shopping list and then I pointed: a cucumber, two kilos … (laughs) because yourself, that effort, just a trip to the supermarket is already too much.

Diederik Jekel

Well, maybe I’ll say something unkind, but have you made those complaints worse yourself unconsciously? By certain actions, the way you behaved or perspective or whatever?

Ilse Schoonderveld

No, I do not think you make your complaints worse. I think you’re ehm ehm in that manner, and one does learn that during cognitive behavioral therapy, then you learn to think what happens? I am experiencing complaints ehm I’m going to bed. I’m not going to do anything anymore, you’re going eh you’re going to find solutions that, you know, think they will work and during cognitive behavioral therapy you will learn to act differently. For example, I still have, for example, I still walk an hour 3 to 4 times a week. When I am tired, I put on my shoes and I go for a walk and I feel better. You can create a change, you can turn it around and you can get through it again and you need tricks for that and I could never have learned it myself. And thanks to cognitive behavioral therapy ehm, I now have a kind of first aid kit filled with tools that work for me.

Voice over

But unfortunately the psychological treatment does not work for everyone. More than half of the patients remain ill and part of them even deteriorate after treatment. Céline Corsius was ten years old when a virus infection changed her life. During the past 17 years she became sicker after every effort. 23 hours a day she is in bed in the dark.

Céline Corsius

I just played with the cat and that was actually a bit too much.  Then I suffer from my heart, I start to sweat and I have to remain very calm.

Voice over

Céline is now an adult, but is cared for by her parents.

Lou Corsius

Like this?

Céline Corsius

May be slightly more counterpressure

Lou Corsius

Some more counterpressure? Like this?

Céline Corsius

Yes, yes that is enough

Lou Corsius

Push …

Voice over

They saw how they did not get better, but worse because of the psychological treatment Celine received in a rehabilitation center.

Iselle Corsius

We knew that Céline was ill, because we saw very clearly that there was a moment when she fell ill when she was ten years old. We have seen that in the years that followed, she became increasingly ill.  And in the rehabilitation center Céline has learned: what you feel as fatigue, that’s just a feeling. You have to learn to think differently about that. You can do better. Fatigue has lost its signal function for you. You just have to think differently about that.  So you can feel tired ehm, but you still have to do things.

Lou Corsius

But there was a contradiction. For example, if she was running in the hall and she said ehm I do not keep up anymore, then it was said ehm no, you have agreed this many minutes. So you have to keep on going.

Iselle Corsius

Or, for example, when swimming;  she had to be in the pool for a certain time, in the water and, for example I do not know exactly, after ten minutes Céline said: I can’t go on anymore. She had to stay in the water and she was not allowed to leave. Because the agreement was that it would last this long and they also used the word bargaining. At the moment Céline was rehabilitating, when she was carrying out that exercise, it was not possible to act differently. So you have to say on the one hand: now I can’t carry on, and at the same time if you do that, it will be labeled like if you try to negotiate.

Lou Corsius

She started in September and this was in December. If I’m right around December 5th?  Ehm and then the rehabilitation doctor ehm said this is not rehabilitation anymore. And ehm we are not going to continue this as a rehabilitation treatment, this has to stop.

Iselle Corsius

You might as well go to the butcher with this problem.

Jeroen Kortschot

Yes, he was empty-handed….

Iselle Corsius

Yes, you do not need physical therapy. Je You just have to become active again and just go to school

Jeroen Kortschot

That was the story ..

Iselle Corsius

That was it, it was an out of control puberty.

Lou Corsius

You have to become active again. Just do it.

Voice over

Not everyone is recovering from cognitive behavioral therapy. And there are indications that some people even suffer damage. That is why the therapy is no longer recommended in America.

Iselle Corsius

Voice over

The evidence for the efficacy of behavioral therapy in ME in the scientific literature is not strong. As is often the case with this type of study, different definitions for fatigue, improvement and recovery are used. It is difficult to exclude placebo effects, and if patients do not finish the therapy, it is usually not investigated why they stop treatment.

Diederik Jekel

Maybe they are the ones that get a lot of problems with the therapy. That, if nothing is said about it..

Gijs Bleijenberg

Well I just tried to explain that ..

Diederik Jekel

How do you know that this is the best solution?

Gijs Bleijenberg

No, but I do not claim this is the only and the best solution.  But it is at this moment …

Diederik Jekel

Het is de preferred treatmentIt is the preferred treatment

Gijs Bleijenberg

At the moment, this is the only treatment that has already proven its effectiveness countless times. We visited people who were bedridden at home … We also offered treatment, but did not want treatment.

Diederik Jekel

Why not?

Gijs Bleijenberg

Well, you have to ask them. I think because of the fear of eh just losing what they now had, namely a stable situation, and I can understand that, to lose it.

Céline Corsius

Sometimes people sometimes say: I wish I could lie in bed all day. But that’s not great at all, because I’m in pain everywhere and I can not find a good posture and everything is uncomfortable. All mattresses, it doesnt matter which one…. Pff, just sit down

Lou Corsius

What I always assumed is that when a certain treatment method has been studied, then my simple thoughts have always been: this has been scientifically researched, it is a good thing and that is what we trust on. So if you, as a therapist, are going to give this treatment with full conviction and you make your clients or your patients worse, then that is an extremely serious matter. And I think, I can’t actually blame the practitioner for that. Because he has delivered this therapy based on scientific research and it should be possible to assume that it is in order.  There is one but however: it is not okay.

Anil van der Zee

Sigh, (…) here I have everything.  I have my microwave at my bedside. So very little happens in the kitchen. All happens lying down. (…… knife ….) Normally you would get up to grab a knife, but I really shouldn’t do that. I would be suffering for days. And at the knowledge center for chronic fatigue, at Pace yes, that is seen as fear of exercise and nonsense, whatever. More and more they discover that there is biomedical problem. That is just plain obvious, no nagging. It is all preliminary, but it is clear this is true.

Frans Visser

Well, come lie down here

Diederik Jekel

Yes, shoes on / off?

Frans Visser

Ehm shoes do not matter.  So we first lie down.

Voice over

We could find no more than just one doctor in the Netherlands who wants to treat people with ME medically, i.e. physically.

Frans Visser

So this is the blood pressure monitor.

Voice over

Visser is a cardiologist and he focuses on a characteristic feature of ME patients: they have a disrupted circulation when they stand or sit up. And because of this they become dizzy, sick or even confused.

Frans Visser

I always ask fifteen questions immediately after the tipping. And those are all questions that relate to complaints of reducing the flow of the brain. Well the best known is: Dizzy?

Diederik Jekel

No

Frans Visser

More tired than lying down?

Diederik Jekel

No

Frans Visser

OK

Diederik Jekel

But how can you help patients? Who no longer have this system…

 

Frans Visser

Well, fort hat purpose, there are several methods to deal with ehm and several for ehm to improve the complaints. And the first one is a very simple one, for example. It’s compression stockings and the only thing they will do is: the blood goes back up from the legs. The other branch is the prescription of medicaments. So there is a very familiar fludocortisone. That is in fact a means that fills the bloodstream a bit. It retains water and moisture and it will retain salt, it will help sustain a better bloodflow into the brain.

 

Diederik Jekel

Thus, you do not have five liters but five and a half liters in your vains as a matter of…?

Frans Visser

Yes, the effect of gravity remains is always present. This way you try to counteract that a bit.

Diederik Jekel

It is recommended that one should undergo behavioral therapy, but you are one of the few who just try something medical.

Frans Visser

If it works for the majority of people, why not do it?

Diederik Jekel

But why is it still said yes, do you know behavioral therapy is the only eh way to go?

Frans Visser

Yes, and that is due to the fact that there has been done simply too little research and too little research on medicaments as a treatment.

Voice over

In the academic hospital in Groningen, research is being conducted into the causes of ME.  Now that all the obvious suspects have turned out to be innocent. Overhere they look into the brain. A new mysterious suspect lurks in our brain. Usually useful immune cells have recently been associated with hitherto unresolved brain diseases. Only in this laboratory they make a very sensitive radioactive tracker, that can detect whether the immune system has wrongly turned against the healthy brain. The track finder works only a few minutes and has to be prepared and then quickly injected in a chronically fatigued patient. If they can prove at UMC Groningen that the immune cells are the culprits, they can take on the case against these new suspects.

Janine Doorduin

The brain also has its own immune system, the microglial cells, and these are cells that are actually at rest in the brain. We call that at rest, but they are actually continuously scanning the environment

Elisabeth van Nimwegen

For intruders, bacteria, viruses that do not belong in our brains?

Janine Doorduin

Or general damage. For example also a concussion or eh heavy brain trauma; then they notice that there is something wrong in the brain and then they become active and the moment they become active, then they go to that … then they go looking for the brain cells that are damaged and they will try to repair it or if it is so badly damaged they will clean up, that is a bit dependent on the situation.

Elisabeth van Nimwegen

How is it that they are now in the spotlight all of a sudden?

Janine Doorduin

Well, that is due to the fact that more and more is known about these cells and that also in many brain disorders and not only in ME, where we expect them to play a role, but also in diseases such as psychiatric diseases, schizophrenia, depression, but also neurological disorders such as Alzheimer’s, Parkinson’s disease, we see that these microglial cells do something. And with each disease, that role is different, but they do play an important role in the development, but also in the course of the disease.

Elisabeth van Nimwegen

And the recovery?

Janine Doorduin

And the recovery possibly, yes.

Elisabeth van Nimwegen

But what do these microglial cells do in ME patients?

Janine Doorduin

Well, what could be possible is that these microglial cells are active in the brain and that they actually cause damage, which they should not. That is one of the theories, and that would be in areas of the brain that are involved, for example, in the case of bloodpressure that patients suffer a lot from, or in other related brain disorders.

Elisabeth van Nimwegen

Is that a first step towards a possible medication?

Janine Doorduin

Yes, that is possible, but then we have to know what these microglial cells do in the brain. They can also do something good.  There are also certain microglial cells that are doing good things when they are active.  Then you obviously do not want to hamper them. But suppose that the disease makes the microglial cells cause damage in the brain, then you might be able to inactivate them and make sure they can’t cause that damage.

Voice over

Until medical science has been able to unravel ME, patients will have to learn to live with their complaints. Some rehabilitation centers try to make patients move more, but they make sure that people do not get sicker.

Diederik Jekel

Here in this pool you have been swimming a lot of laps?

Hanneke Mentink

Well, that was my first thought. Just swim continuously, during half an hour as much laps as possible. But well, that is of course not the intention, because you do not have the energy for that. At a certain moment they also said that there are cushions, which I had to put under my head and a floating support under my legs and then I had to lie down. Relaxing. Well, I found that to be so difficult because I had thoughts like: and those laps ?!

Diederik Jekel

‘But I want to get better and now’ .. and did you feel a little like you were lazy?

Hanneke Mentink

Yes, but it was really good.

Karlein Schreurs

Guidelines indicate a direction. And it is important that all professionals, physicians included, look at the effect of following these guidelines with this individual patient. And so, when you start training, you have to see what that does to that specific patient. And so, you have to ask about how long that recovery time has been.

Diederik Jekel

Do not just keep on ..

Karlein Schreurs

Do not just keep pushing through just like that. We psychologists here, have to look at the body. At the same time the physiotherapists, occupational therapists all know that thoughts do a lot with people, This kind of complex syndromes can only be treated with multiple disciplines when you are willing to let go a bit of your own professional focus.

Voice over

A substantial percentage of the patients will have to wait for adequate medical treatment and in the meantime hope that they will not be accused by scientists and society they are people who just pretend to be sick.

 

 

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