Tonight on Dutch TV - ME / CFS documentary

M

Mattie

Senior Member (Voting Rights)
After the promising radio interview yesterday, with one of the documentary makers and the father of an ME patient (https://www.nporadio1.nl/radio-focus/onderwerpen/445612-onverklaarbaar-oververmoeid)

Dutch transcript from radio interview on https://corsius.wordpress.com/
English transcript here: https://corsius.wordpress.com/2018/...iew-by-eveline-van-rijswijk-with-lou-corsius/

Tonight at 21:25 on Dutch national television:

Focus documentary: Inexplicably exhausted

Starring our very sympathetic members @Grigor and @Lou Corsius

Can be watched on
https://www.npo.nl/focus/22-02-2018/VPWON_1283735

(probably cannot watch it from abroad... and it is in dutch anyway)

Synopsis (translated)
Thousands of people in the Netherlands are chronically exhausted, with no clear medical cause. Their disease is called chronic fatigue syndrome or ME. Psychologists claim that they can cure patients, but their treatment is by no means always effective and some patients even say they have become sicker of psychological therapy. Focus shows people who are severely disabled due to chronic exhaustion and who find that they have been ruthlessly treated by psychologists and doctors. Diederik Jekel and Elisabeth van Nimwegen also investigate alternatives to psychological treatment and see if there might be a physical cause for this disease which sometimes even leads to euthanasia and suicide.

From the radio Interview:
Corsius: Well, we assume that for Céline rehabilitation has contributed to her deterioration. And as far as the PACE Trial is concerned, you can also say that it has caused quite a stir, because it turns out that the researchers have changed their outcome measures halfway through the research.

Van Rijswijk: Yes. Can we briefly explain: what was wrong with that research?

Corsius: That is really a very long list. :thumbsup:
 
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Unfortunately the TV-documentary did not deliver after the promising radio interview.

Psychobabbler Gijs Bleijenberg gets too much of a podium:
"...yes with CBT people will be able to achieve their goals again..." :nailbiting:

After this they show a former CFS patient telling how positive thinking and CBT has really helped her.
"...And if I don't feel so good, I just go walking for an hour. And it just helps..."
"...CBT gave me the tools I needed..."

Sigh.:confused:

Luckily after this they make it clear that CBT/GET is not for everybody and it even makes some patients worse.
Well done Corsius family!
After this they go on explaining that the science behind CBT/GET is weak.

But again Gijs Bleijenberg comes up saying it's the only effective treatment for now. And that people staying in their beds refusing treatment clearly have something to gain from that.

Rest of the documentary is hardly interesting.
Too many psychologists talking. It is really poorly made. It lacks structure, it lacks understanding of the illness.
The makers clearly failed to do their homework properly.

This broadcast does not help us.
Unlike the radio interview, thanks to @Lou Corsius!
 
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I agree, not nearly as good as the radio interview.
No structure, it seems they wanted to let everybody with an opinion on ME/CFS have their say and let the viewer make up their own mind.

Mattie said:
After this they show a former CFS patient telling how positive thinking and CBT has really helped her.
Click to expand...
Even though they explicitly say she has no ME but is chronically fatigued this is still not helpful in a documentary about ME/CFS :banghead:

Mattie said:
Unlike the radio interview, thanks to @Lou Corsius!
Click to expand...
And of course Anil / @Grigor :thumbup:
 
The crapness of the CBT-studies wasn't more than a footnote after Bleijenberg and v.d. Meer had a chance to spread their bullshit. I was continuously waiting for them to be hit over the head with the facts, but when it came it was short and blurry. Compared to the radio-interview this was crap. Thanks for @Grigor and @Lou Corsius + family for telling our side of the story though. Without that it would've really stunk. I told my doctor's assistant to watch but am now sorry I did.
 
O wow, I was so dissapointed yesterday:confused:

I listened to the radio interview and that was so good!! Lou Corsius was explaining very well the problems with PACE (and other research) and the director of the documentary really seemed to know what the problem was and sounded well informed and therefore surprised and (rightfully) upset about the way people are treated in the Netherlands with this disease.

So my hopes were extremely high, maybe that's the problem.

The documentary on TV was weak.

Lou Corsius was brilliant:thumbup::thumbup: (I loved the "you might as well go to a butcher:laugh:"). Anil and Celine, thank you so much for showing how you are living:hug:

I loved the very down-to-earth friend of Anil who comes and brings him food and said how he made him a bed in the toilet and that he can't get homecare "because it will stand in the way of his recovery:banghead::banghead::banghead:". It was just so practical, down-to-earth and at the same time so shocking, I can not imagine not being outraged when seeing that.

After the radio segment, I hoped for a pitbull documentary, but they showed all the CBT and GET proponents, there was not a clear point to the story. It was not clear what the problems with the shoddy science is, what the difference is between CFS, ME, burn out and other illnesses. The two ladies who recovered with CBT were typical burn-out/panic attack stories, very annoying that is was all muddled in one story.
The documentary was made as if the world stops at the country border. Not a word about the research being done in the USA, Norway, Australia etc.

That Bleijenberg, what a horrible guy:yuck::yuck: Bedbound people are afraid to lose something???? It was really a pity that the interviewer didn't put him on the spot, he just sat there and listened to that nonsense.

We need a David Tuller, a real pitbull journalist who wants to get to the absolute bottom of the story!
 
Mattie said:
After this they show a former CFS patient telling how positive thinking and CBT has really helped her.
"...And if I don't feel so good, I just go walking for an hour. And it just helps..."
"...CBT gave me the tools I needed..."
Click to expand...
I thought it actually made for a decent contrast, especially since they specified that she didn't have ME. They were showing severe ME patients before and after that, and it was a stark difference. And considering the official line on ME in the Netherlands is purely psychosomatic, I thought it did a decent job of challenging that.

Hopefully the creator of the documentary will be braver about attacking pseudoscience in the future, and have better a arsenal with which to do it. Remember that the documentary was made before the interview, even if aired in the opposite order, so he may have started out with a very different outlook and intent than he has now.
 
Mattie said:
But again Gijs Bleijenberg comes up saying it's the only effective treatment for now. And that people staying in their beds refusing treatment clearly have something to gain from that.
Click to expand...

Is there an exact quote for that which could be used? Sounds interesting.

Sorry to hear that the documentary was disappointing and failed to dig into the problems with this research.
 
Thanks for all the nice comments. We all expected more. Sadly it didn't really deliver but I do think CBT was given a question mark. Until recently that rarely happened.


Let's hope the media will keep trying to get the story right.
 
Esther12 said:
Is there an exact quote for that which could be used? Sounds interesting.
Click to expand...

Bleijenberg: People with this illness have had it for a long time. More than 6 months according to the definition. They are so tangled up in their illness that they cannot get out of it. It often started with a physical cause.
Interviewer: But that biological cause is no longer present?
Bleijenberg: Yes, the initial cause is no longer active.
Interviewer: What can be achieved with CBT? Can you completely cure patients with it?
Bleijenberg: (Nodding head, affirming) People can again achieve their goals.

Later on:
Bleijenberg: I am not saying that this (CBT/GET) is the only and best option.
Bleijenberg: But this is the only treatment that has proven, time and again, to be effective.
We have visited patients at home who are bedbound and offered treatment, but they refused.
Interviewer: Why?
Bleijenberg: (Shrugging and sighs) You would have to ask them. The fear of losing what they have; to lose a stable situation, which I can understand...

Oh dear mr. Bleijenberg, how very wrong you are. I wish we could swap bodies for a week. You would so very quickly shut the fork up.
 
Valentijn said:
And considering the official line on ME in the Netherlands is purely psychosomatic, I thought it did a decent job of challenging that.
Click to expand...
I disagree. I do not think it was adequately challenged.
I would never ever recommend this documentary to anyone I know. It is way too vague in challenging CBG/GET. It has at best a few weak attempts.
 
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Esther12 said:
Is there an exact quote for that which could be used? Sounds interesting.

Sorry to hear that the documentary was disappointing and failed to dig into the problems with this research.
Click to expand...

I'm not dissatisfied with this broadcast. It could have been more firm, but it was the first time that a national tv broadcast showed the doubts about the Wessely-school/NKCV approach that clearly. Together with the radio interview we made a statement I think.
 
The radio interview was brilliant. That's why the TV broadcast was so disappointing.
And unfortunately the radio interview aired in the middle of the night, between 3 and 4 AM. I'm afraid that it will not have reached a lot of people outside of the ME/CFS community.
 
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