News from The Netherlands

Thank you for giving a report on the content @Solstice. It sounds excellent and well-made. (And almost miraculous for a dutch production :D)

I particularly like the doctor explaining that unintentional harm can be caused by well-meaning activity/exercise expansion regimes, and the presenter sitting on the bike and experiencing utter bafflement at how little effort for her causes a two-month recuperation period for LC patients. Both are not only informative, but also connect with non-patients.

I wonder if the makers would agree to getting it subtitled and distributed abroad.

Edited for clarity
 
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Trish said:
Was it on a TV channel that lots of people watch?
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Solstice said:
NPO is similar to the BBC for those not Dutch.
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According to the ratings, the peak number of viewers was 540,000, and the average 215,000 viewers.

(Source: Kijkonderzoek)

Edited to add: given the competition from 8 o'clock news, the Tour the France (so people have been watching hours of tv in the afternoon), and the celebration of Keti Koti with ample programming due to our nation's royal apology for the national and royal involvement in slavery, the numbers seem quite good to me.
 
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Arvo said:
According to the ratings, the peak number of viewers was 540,000, and the average 215,000 viewers.

(Source: Kijkonderzoek)

Edited to add: given the competition from 8 o'clock news, the Tour the France (so people have been watching hours of tv in the afternoon), and the celebration of Keti Koti with ample programming due to our nation's royal apology for the national and royal involvement in slavery, the numbers seem quite good to me.
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215,000 viewers is very good for a country our size tbh. I'm trying to get the entire family to watch it too on replay. Which might be the main value of a program so well done. We have something we can share that raises understanding.
 
I haven’t investigated this


From: Dr. Marc-Alexander Fluks

WebTV [In Dutch]
https://www.npostart.nl/op1/11-07-2023/POW_05684648
With Covid-virologist Marc van Ranst from Belgium stating that
CFS/FM-quacks are also Post-Covid quacks [0:42:40]

WebRadio [In Dutch]
https://open.spotify.com/episode/7bBh8lX7ZRLiTRtxhxZZPA

Corresponding textfile [In Dutch]
https://open.spotify.com/episode/1v...source=embed_player_p&utm_medium=desktop&nd=1
[Google translation from Dutch to English]:
https://dit-eo-nl.translate.goog/ar...-tot-zorg?_x_tr_sl=nl&_x_tr_tl=en&_x_tr_hl=en
 
Dolphin said:
I haven’t investigated this


From: Dr. Marc-Alexander Fluks

WebTV [In Dutch]
https://www.npostart.nl/op1/11-07-2023/POW_05684648
With Covid-virologist Marc van Ranst from Belgium stating that
CFS/FM-quacks are also Post-Covid quacks [0:42:40]

WebRadio [In Dutch]
https://open.spotify.com/episode/7bBh8lX7ZRLiTRtxhxZZPA

Corresponding textfile [In Dutch]
https://open.spotify.com/episode/1v...source=embed_player_p&utm_medium=desktop&nd=1
[Google translation from Dutch to English]:
https://dit-eo-nl.translate.goog/ar...-tot-zorg?_x_tr_sl=nl&_x_tr_tl=en&_x_tr_hl=en
Click to expand...

Didn't listen to the podcast. The TV program was allright. They touched on psychology for a small bit but it was basically dismissed. Went on about Ivermectin and other alternative treatments. Van Ranst en the two women of the podcast explained that patients are getting desperate and therefor turn to alternative medicine.

The patient said that none of that had helped him and his GP dismissed it as depression(LC doesn't exit) still. The focus was on the lack of even basic biomedical research and how this was a huge problem. The two women reiterated that patients felt abandoned by regular care and mostly didn't blame alternative care for failing them. It was really the lack of anything on offer from regular medicine. I thought it was pretty good all in all.
 
He says it isn't a precedent which is a pity if it turns out to be that way. But it's good to see they've won. I've been one of many that just gave up with UWV. My lawyer being a piss-ant out for a lazy buck didn't help either. My dad ended up arguing my case instead of that tool, he luckily had some legal background.

"Funny" thing, we met one of his former colleagues(my dad worked at city hall, not in legal or anything). My dad had forgotten about him really, but my dad told him it was too late now but we should've gotten him. He had to plead a case for a patient who had something wrong with her lung or heart and it apparently was demanded she'd show up in person. So my dad's old colleague had her driven to court in an ambulance after which the judge pretty much immediately conceded the woman was indeed too sick to work. It wasn't just a gambit either, the woman was too sick to make it any other way.

It's an illustration of what a shitshow the UWV is. Most humane doctors won't work for them anymore. The ones that are left are worried about quotas instead of patients.
 
Listen to Argos on radio 1 on Saturday September 2 at 2 p.m. About #MEcvs biomedical research with, among others, ME patient Céline Corsius.

Argos is the platform for investigative journalism of HUMAN and VPRO.

Via the newsletter of the ME/CFS Association.



Which will be about the ZonMw mess. They've reported before about dubious practices by ZonMw:

https://www.vpro.nl/argos/lees/nieuws/2017/Schimmige-praktijken-bij-ZonMw.html
 
this is what the reporter who created the broadcast announced:


"We do recount the entire run-up to the grant program (starting with the Citizens' Initiative) and show how gradually resentment develops among three of the four patient organizations (ZonMw scaling down voting rights into advisory rights; grant to ME/CFS Lines). Plus an insight into the life of a (seriously ill) ME patient and her loved ones.

Seen from a distance, I think it's mostly a story about despair - and what additional misery that can lead to."

The broadcast can be listened to (in Dutch of course) afterwards via https://bit.ly/47SRPfZ and also via argosonderzoekt.nl where Argos itself will pay attention to it
 
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there is much more to report about the Dutch ZonMw-research program and the protests against it, but I wonder where that should be posted. As a reminder: I happened to be a member of the ad hoc ME/CFS committee of the Dutch Health Council producing their advisory report in March 2018, as well as a member of the steering committee of ZonMw (which composed the research agenda, presented to the then minister of Health, who approved it in March 2021 with a budget of € 28,5 million over 10 years)

also there's a lot to report about a new ME/CFS guideline to be created in the Netherlands by a preliminary working group proposed by Dutch ZIN (zorginstituut Nederland), containing a heavy representation of the bps-school of ME, like Hans Knoop, Jos van der Meer (both of whom closely cooperate and publish with the proponents of the Wessely-school like Michael Sharpe and Peter White) and Meghan Roerink, with the NIV (Nederlandse Internistenvereniging) as appointed penciler. In 2015 the NIV advised the Health Council that no new advisory report was needed and that the CFS-guideline of 2013 still sufficed and should not be replaced.
 
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rob wijbenga said:
there is much more to report about the Dutch ZonMw-research program and the protests against it, but I wonder where that should be posted.
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Since there is already discussion about it on this thread, you can post it here. If it looks like it needs a new thread, mods can split it off.

rob wijbenga said:
also there's a lot to report about a new ME/CFS guideline to be created in the Netherlands by a preliminary working group proposed by Dutch ZIN (zorginstituut Nederland),
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We don't appear to have a thread on this, so you could start one in this subforum: Other guidelines
 
Trish said:
Since there is already discussion about it on this thread, you can post it here. If it looks like it needs a new thread, mods can split it off.


We don't appear to have a thread on this, so you could start one in this subforum: Other guidelines
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we informed the global community on a regular basis (once every 3 months) on both topics via the ME Global Chronicle and will continue to do so, so to avoid double work and waste of precious energy, it would suffice to post links to articles in the published issues. But I want to make sure this is being appreciated by you admins
 
rob wijbenga said:
this is what the reporter who created the broadcast announced:


"We do recount the entire run-up to the grant program (starting with the Citizens' Initiative) and show how gradually resentment develops among three of the four patient organizations (ZonMw scaling down voting rights into advisory rights; grant to ME/CFS Lines). Plus an insight into the life of a (seriously ill) ME patient and her loved ones.

Seen from a distance, I think it's mostly a story about despair - and what additional misery that can lead to."

The broadcast can be listened to (in Dutch of course) afterwards via https://bit.ly/47SRPfZ and also via argosonderzoekt.nl where Argos itself will pay attention to it
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https://www.nporadio1.nl/fragmenten...hoop-grote-heibel-over-studies-naar-ziekte-me


Van hoop tot wanhoop: grote heibel over studies naar ziekte ME

  1. Fragmenten
  2. Van hoop tot wanhoop: grote heibel over studies naar ziekte ME
ArgosHUMAN & VPRO02 september 2023 14:00 - 15:00

Het zag er zo mooi uit. Patiënten die lijden aan de chronische vermoeidheidsziekte ME kregen het na jarenlang duwen en trekken voor elkaar dat de overheid diep in de buidel tastte om grondig onderzoek te laten doen naar hun mysterieuze, welhaast verlammende aandoening. Maar op het moment dat de eerste miljoenen worden toegewezen, ontstaat er grote ruzie – tussen patiënten onderling én tussen patiënten en ZonMw, de instantie die medisch-wetenschappelijk onderzoek in Nederland financiert.

De vier patiëntorganisaties voor ME was een belangrijke rol beloofd in de subsidieprocedure. Sterker, de inbreng van patiënten was essentieel, vonden ook de minister van VWS en de Gezondheidsraad. Maar halverwege de subsidieprocedure wordt ineens alles anders.

ZonMw komt haar eigen regels en beloften niet na, vinden sommige patiëntorganisaties. En nu gaan er ook nog miljoenen euro’s gemeenschapsgeld naar een onderzoeksproject waartegen drie patiëntenclubs grote argwaan koesteren - terwijl één organisatie juist laaiend enthousiast is.

Vrijwel iedereen gaat inmiddels rollebollend over straat. Gevolg van de wanhoop over het uitblijven van een eenduidige behandeling van een ingrijpende ziekte.
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From hope to despair: major controversy over ME disease studies
  1. Fragments
  2. From hope to despair: major controversy over ME disease studies
ArgosHUMAN & VPROSeptember 02, 2023 2:00 PM - 3:00 PM

It looked so beautiful. After years of pushing and pulling, patients suffering from the chronic fatigue disease ME managed to get the government to dig deep into their pockets to have a thorough investigation into their mysterious, almost crippling condition. But as soon as the first millions are allocated, major quarrels ensue – between patients themselves and between patients and ZonMw, the body that finances medical research in the Netherlands.

The four ME patient organizations were promised an important role in the grant process. In fact, input from patients was essential, the Minister of Health, Welfare and Sport and the Health Council agreed. But halfway through the subsidy procedure, everything suddenly changes.

ZonMw does not comply with its own rules and promises, according to some patient organisations. And now millions of euros of public money are also going to a research project about which three patient clubs harbor great suspicion - while one organization is wildly enthusiastic.

Almost everyone is now rolling around on the street. The result of the despair over the lack of a clear treatment for a serious illness.

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Also

https://www.nporadio1.nl/podcasts/a...hoop-grote-heibel-over-studies-naar-ziekte-me

  1. Van hoop tot wanhoop: grote heibel over studies naar ziekte ME


ongeveer 3 uur geleden

Het zag er zo mooi uit. Patiënten die lijden aan de chronische vermoeidheidsziekte ME kregen het na jarenlang duwen en trekken voor elkaar dat de overheid diep in de buidel tastte om grondig onderzoek te laten doen naar hun mysterieuze, welhaast verlammende aandoening.

Maar op het moment dat de eerste miljoenen worden toegewezen, ontstaat er grote ruzie – tussen patiënten onderling én tussen patiënten en ZonMw, de instantie die medisch-wetenschappelijk onderzoek in Nederland financiert.

Vrijwel iedereen gaat inmiddels rollebollend over straat. Hoe konden miljoenen voor onderzoek naar de vermoeidheidsziekte ME leiden tot chaos en wanhoop?

Presentatie: Eric Arends


From hope to despair: major controversy over ME disease studies
  1. podcasts
  2. Argos
  3. From hope to despair: major controversy over ME disease studies
argos.300.db01cebb6a70121508db64fcec63c11a.jpg

about 3 hours ago

It looked so beautiful. After years of pushing and pulling, patients suffering from the chronic fatigue disease ME managed to get the government to dig deep into their pockets to have a thorough investigation into their mysterious, almost crippling condition.

But as soon as the first millions are allocated, major quarrels ensue – between patients themselves and between patients and ZonMw, the body that finances medical research in the Netherlands.

Almost everyone is now rolling around on the street. How could millions spent on research into the fatigue disease ME lead to chaos and despair?

Presentation: Eric Arends
 
@Lou Corsius represented us well here. The reporter didn't really go that much in-depth. He made a couple interesting points and some wishy-washy stuff imo. Maybe I'm asking too much here, but the issue really is quite black and white. Wouldn't be hard to see by looking even at recent evidence that Rosmalen is completely and fully in the BPS-camp and her promises to deliver biomedical research can't be taken seriously. The story around Celine is truly heartbreaking. My thanks to Lou for representing us so well during such dreadful times.
 
There was a nice little one-two between the one patient organization still supporting the decisions made and ZonMw where the patient org warned that if it went on like this ZonMw might back out entirely. The reporter had contacted ZonMw who didn't want to come on air but did hint that this would be an option if work couldn't be done in a constructive manner.

The good ol', tank the project, blame the patients followed by withholding further "aid".
 
I've added English and Dutch subtitles to the radio program about ZonMw and funding the ME/CFS Lines consortium led by professor of Psychosomatic Medicine Judith Rosmalen. Featuring amongst others @Lou Corsius, his wife Iselle and their daughter with severe ME Céline.

fb.watch/n2Grafuq4N/

.
 
Nico Drost (Member of Parliament) said:
Today I am submitting the proposal to release an additional amount of 4.4 million euros for biomedical research into ME. This way, the research that has already been granted does not have to be stopped, but justice can still be done for ME patients.
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There are so many people in the Netherlands who suffer in silence, ME patients are an example of this. The moving story of Céline Corsius was recently in the news
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Another personal story comes from @AnilvanderZee, he made a video of his days with ME.

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This way I get to hear many personal stories. In the most serious variant, people lie in a dark room all day and even a visit for a few minutes can be too much. So I hope my amendment will pass soon. A ray of hope for many people!
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Here is some more background about the ongoing research.

https://www.nporadio1.nl/nieuws/ond...zetten-onderzoeken-naar-ziekte-me-op-de-tocht
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