Tonight on Dutch TV - ME / CFS documentary

unicorn7 said:
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!
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My wife Iselle said that in the tv program. It was the physician at the rehabilitation centre who dared say that stupidity: You might as well go to the butcher. We are still so angry about that, even if it is about 13 years ago. This is what the psychological image of the illness leads to: a total denial of the severeness and the impact of ME on a patients live.
Céline, now 27 years old, told us what it did to her and to her selfconfidence to be confronted with this kind of denial as a 14 year old child and during all these years after that.
 
Valentijn said:
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.
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Maybe you are right. I saw some more reviews and a lot of people where a lot happier about it then I was. Maybe I was expecting too much based on the radio-interview which was very very good from all involved. Hopefully this Kortschot fella stays on top of things and does more pieces in the future.
 
Lou Corsius said:
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.
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Sorry to read it was not everything people hoped for.

If, as Lou says, that is the first time that doubts have been shown to the public, I think that is a good sign (if not enough).

The most powerful censorship in a democratic society is the censorship of omission. People cannot place value on and consider alternatives that they do not know exist. Hopefully it is the first crack letting light in. A certain number of people have now seen that the problem is considered a problem, and is 'allowed' to be debated.

edited to add 'as' in second sentence.
 
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Grigor said:
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.
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Small steps.
When a paradigm is so ingrained it takes time to get traction.

Bit like an iceberg, small cracks until you hit the critical mass moment and the whole thing collapses. ( Note this is a visual allegory i don' t know about iceberg science at all)

Hopefully we are seeing a few cracks and the sheering off into the water will not be too long.

Given unrest seems to have opened up an awareness, i think millions missing needs to be more coordinated and pull no punches going forward.
 
Lou Corsius said:
My wife Iselle said that in the tv program. It was the physician at the rehabilitation centre who dared say that stupidity: You might as well go to the butcher. We are still so angry about that, even if it is about 13 years ago. This is what the psychological image of the illness leads to: a total denial of the severeness and the impact of ME on a patients live.
Céline, now 27 years old, told us what it did to her and to her selfconfidence to be confronted with this kind of denial as a 14 year old child and during all these years after that.
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Oh no, I'm so sorry!:speechless: I though you and your wife said that about the doctor. I thought it was meant as:" getting a doctor to treat your ME? You might as well go to the butcher..."

But the doctor said that to you?? :jawdrop: I can't imagine going through this at that age. I was the age Céline is now, when my illness started and I was actually working in the medical field and even then the denial was already horrible. Very brave that she was on TV with this and wanted to show what she is going through.

It sounds horrible, but I think involving children in the narrative of the story really makes people wake up. I have a GP friend who I have told about all the problems (political, medical etc.) with ME. The only time when she looked extremely interested was when I was talking about children being forced to undergo treatment that makes them worse. That is one of the things that could potentially cause outrage in the public.

Looking back, I have been to negative about the documentary. It was just that the radio interview was like a dream come true:angel: So, I was watching the documentary and waiting for Bleijenberg to be slapped with the truth, but that didn't come:laugh:
For me, the difference between ME and CF (or burn out?) was pretty clear, but I was wondering if the public would get that.
 
Lou Corsius said:
https://corsius.wordpress.com/2018/...-ntr-february-22-2018-inexplicably-overtired/
https://www.ntr.nl/Focus/287/detail/Onverklaarbaar-oververmoeid/VPWON_1283735#content
TV program and English transcript
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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 …
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We could find no more than just one doctor in the Netherlands who wants to treat people with ME medically, i.e. physically.
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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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