ME on Dutch TV

[Ember]

 

[alex3619]

A fairly good interview I thought. What is particularly interesting is they videod a woman with ME and the day after took a photo. They managed to capture in that photo how much worse she was the next day, just from doing the interview. Which of course indicates the main feature of ME: worsening after minimal activity. Their therapies mentioned being tested were immunological too.

 

[Nielk]

I agree with Alex. I thought this was an excellent clip. At first, I was thinking "wow, this woman looks too good" but, then her photo of the next day was so powerful.

 

[Guido den Broeder]

The presentation was good, the info less so. They were portraying ME/CFS (as they called it, rather than ME) as one of a number of diseases that are far more common than people think, and from this followed a number of additional errors.

 

[Valentijn]

The presentation was good, the info less so. They were portraying ME/CFS (as they called it, rather than ME) as one of a number of diseases that are far more common than people think, and from this followed a number of additional errors.

It was pretty vague, probably due to the short amount of time they had. But it did a good job of conveying the severity of ME, and didn't so much as mention the psychological theories

 

[maddietod]

Amazing show. Somebody cared enough to figure out the power that photo would have. I wish they'd air this in the US.

 

[SilverbladeTE]

Good this will help undo some of the damage (socially/awareness/propaganda) of those evil psychobabblers in the Netherlands.

I just keep hoping that some genuine investigative journalist, some ex-cop, someone who records some illegal dealings going on near them, a "Wikileaks", exposes the psychobabblers and their web of connections/reasons, and brings the roof down on their heads, ala the "Levenson Inquiry" in the UK.
More the ground swell against those vile bastards grows, more the public is aware of our plight, the more this becomes possible, for it's largley been a fight of propaganda, the evil spirit of Dr Jospeh Goebbels brought to bear on another group of victims.
It's very cheap as you let cultural issues/ignorance/prejudice do the damage for you against your victim, it's psychological warfare, deny support to the enemy, prevent investigation, attack the medical/bureacracy support of anyone investigating ME by "Chinese whispers" and out right bigotry.


the tide is turning, so the wrongdowers retire with a nice cushy pension to avoid their comeuppance, or launch carefully constructed tirades to try and "regain the high ground"
yes, ME/CFS patients are terrorists, we go to training camps in the mountains, and carry out jihadi strikes on doctors...yes indeedy!
The actual Taleban shoot school girls who defy them, we just tell the psychobabblers ot go f** themselves up the ass with a cactus!
one is a heinous murderous act, the other is a reasonable if crude rejoinder on evil, sly, cowardly abusers

 

[Guido den Broeder]

In all fairness, Dutch tv has never given much support to the psychobabble. But they were always the exception. Most newspapers, for one, still know only 'Nijmegen'.

 

[*GG*]

Where do they get the idea that lots of money is being spent researching our illness? More now, than probably ever, but compared to other illnesses that are not as impactful on people, the money is a pittance!

GG

 

[Valentijn]

Where do they get the idea that lots of money is being spent researching our illness? More now, than probably ever, but compared to other illnesses that are not as impactful on people, the money is a pittance!

I think the Nijmegen psychological group is pretty well-funded. Hopefully that isn't what they're referring to. Obama and the USA was mentioned multiple times, so maybe they were looking at the international picture. Not that that's looking too great currently either

 

[alex3619]

A clip that short couldn't cover everything. They didn't mention Rituximab for example, or the Norwegian government apology. In a two hour documentary expose I would expect them to mention every major issue, not in a brief clip. The video/photo combination of a patient was powerful. I wish that would go viral.

 

[Shell]

I thought this was pretty good for a short clip. The day after photo was powerful. I have never accepted that what we have is an "invisible" illness - it can be seen easily by those willing to see.
I noticed the "lots of money" bit and wondered if it was a translation issue. Guido den Broeder do you speak that language (was it Dutch?) Did he really say there was a lot of money going into the research?

 

[Guido den Broeder]

Yes, that's what he said. Certainly not true here in the Netherlands, where the budget for ME research is zero.

 

[Sparrow]

I really liked this. I'm glad that they included that photo, and I'm really glad that they didn't even give token mention to the foolish psych theories out there in some parts of the world. As it should be.

 

[Persimmon]

How nice to see a sympathetic and upbeat portrayal in the media. The before and after images were persuasive.

They might have been unrealistically upbeat (eg funding levels), but still, it's the best popular media clip I can recall.