Tonight on Dutch TV - ME / CFS documentary

This is how it has been translated now: 'Well, what surprised me is that psychologists are punching above their weight, if I may say so.'

 

Only had time to read a bit of this so far, rest will have to be tomorrow. But it's brilliant Lou, you tell it like it is and get it across well. Interviewer seems to help with this process.

 

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.

 

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.

 

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.

 

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.

 

Oh no, I'm so sorry! 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?? 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 So, I was watching the documentary and waiting for Bleijenberg to be slapped with the truth, but that didn't come
For me, the difference between ME and CF (or burn out?) was pretty clear, but I was wondering if the public would get that.

 

From family members that have seen it I have gathered that they did not get that. Even my father started asking me some wrong questions about "that woman who seemed to be cured"

 

I know. I wasn't happy about that too

 

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

 

Thanks for that. Another long thing I want to try to read!

 

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To express the same sentiment, I often go with "they're writing checks that they can't cash."