News from The Netherlands

Lengthy thread about the politics of Long Covid in the Netherlands, where the health minister has been resisting doing anything for years, ignoring motions from the parliament and when he complies, slow-walking everything. Really disturbing stuff and simply not believable that biopsychosocial ideologues are not driving the whole thing.

I'm not sure how best to make it available. I used nitter.net and used my browser's translate function and it worked pretty well, except for all the images of course. On Twitter, using browser translation works poorly since it only translates 4-5 at a time. With nitter, it translates the whole thread in one go. Nitter works by simply replacing twitter.com with nitter.net in the URL.

Thread about the #LongCovid Letter to Parliament. Kuipers tries to disguise the reality in which patients are dying with sweet talk. Starts well: in the middle of the record corona wave: 'corona is over for many'. That widespread misconception is of course his own creation!
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Then the expertise network. Kuipers now likes to show off that. But here's the timeline: -Kuipers didn't want anything at all, research was unnecessary -(June '22) The House passes a motion calling on him to set up an expertise center for treatment -Kuipers does nothing for a year...
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After 4 years we will define Long Covid. After FOUR YEARS we will define Long Covid. Let us hope, against our better judgement, that the GR committee is not polluted again by science-denying psycho-talk. Invariably, prejudice and conservatism plague LC and ME/CFS.
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Then there was the aforementioned motion (June 22) to establish an expertise center for treatment. Kuipers therefore decided to postpone for a year and ignore half the motion. Why the House of Representatives let him get away with that will always remain a mystery to me.
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https://nitter.net/riendebock/status/1734956393994563742
 
Kuipers has been a thorn in the side of various patient groups including ours. The ZonMw program for ME/CFS looked like it was going somewhere until he got sworn in as minister of health. I think it's more about curbing spending for insurers and government and the BPS-crew are just a tool to do so. Doesn't make him any less dangerous to patients around the country and beyond.
 
Posted by @Grigor on Twitter,
"OMFG! CBT/GET promoter Elise van de Putte. Author of the Dutch PACE-trial called FITNET admits that she harmed about 30 to 40 % of the patients with "#CFS". Obviously this is a huge underestimation & she's still promoting CBT/GET eventhough it goes against scientific advances..."

https://twitter.com/user/status/1736016695884472590
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[Google translated]

"Elise van de Putte (66) is a pediatrician, specialized in social pediatrics. She studies how children's health is influenced by family, school and society, and she also treats children at the Wilhelmina Children's Hospital of the UMC Utrecht. She is a professor there. She is about to retire and over a glass of ginger tea in a Utrecht café she talks about what she has seen changes in her profession over all these years. And how she herself has changed.

The conversation starts with her PhD research, twenty years ago, into chronic fatigue in adolescents, a syndrome that was first described in the US in the late 1980s and was also increasingly seen in the Netherlands. Children, mostly girls, who are too tired to go to school and spend all day on the couch. They have headaches, stomach aches and muscle pain, and a treatable cause cannot be found. Elise van de Putte then noticed that the parents themselves often had health complaints – tiredness, pain, depression, anxiety – and one of her conclusions was that the children grew up in an environment in which being tired and having pain were part of it. It is a complex interaction of predisposition, vulnerability and environment.

She already knew then that it did not help to tell children with chronic fatigue to get off the couch - you are not sick, you can go to school - and she was fully committed to behavioral therapy: learning to think differently about what you feel and what your body can handle. Learn to do differently. And now, twenty years later, Elise van de Putte knows that that does not help in 30 to 40 percent of cases. “I see girls from back then who never got better. They think it is their own fault, because I told you that they could contribute to the solution themselves?” Yes, she minds. She thinks, perhaps, she has only made those girls even more unhappy."

https://www.nrc.nl/nieuws/2023/12/1...ren-worden-geweldig-onder-druk-gezet-a4184273
 
Thanks. I was about to share it here. It's quite something that she admits the emotional harm her work caused. Unfortunately she only says that it doesn't work for some, but fails to mention that many have deteriorated due to her treatments. She keeps promoting CBT as if nothing has happened, so her stance on CBT hasn't really changed I think. Maybe she's now clearer to the kids that it doesn't work, but harm is still not properly communicated?

https://www.facebook.com/1000615116...6RE9MYNTQ8Ko8LseV1FJDR8mWrgoCB2NAVM9MvggAfZl/

This is a survey with kids who have ME:

Survey children Support for Appropriate Care Offer (OPaZ) program of the Ministry of Health, Welfare and Sport.

CBT N=24 :

- 54% of the youngsters were not satisfied with this treatment because it actually deteriorated them.

- 1 patiënt considered it the most traumatic experience ever.

- 38% had een neutrale opinion about CBT.
Only 8% were satisfied

GET N=11:

- 89% dissatisfied, caused deterioration.

https://www.regelhulp.nl/complexe-z.../opaz/rapporten/1/eindrapport-onbegrepen-ziek
 
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A quarter, according to the Verwey-Jonker Institute. A quarter of children in the Netherlands have a complaint or ailment. Research from 2019. This includes everything from cystic fibrosis to asthma, eczema and allergies, from congenital heart defects to constipation and obesity, from depression to persistent physical complaints. “But having an illness according to the doctor,” says Elise van de Putte, “is different from feeling ill.”

She has now found something, she says, that can predict surprisingly well which children with persistent complaints will improve and which children are unlikely to improve: the language they use. And this concerns chronically tired teenage children who receive online behavioral therapy and have to complete assignments and answer questions every day for six months. The words and language constructions they use turn out to be very telling.

“From the first contact,” says Elise van de Putte. “Do they use the first person and describe themselves as an acting person? Or do they present themselves as someone who experiences things?” Children who, through their use of words, demonstrate a lack of personal control, a lack of control over your life - the analyzes were done by neurolinguists - still feel exhausted after six months. “They think,” she says, “that they have little control over their health, that things happen to them. They look for the solution to their complaints outside themselves. Coincidence, fate, higher powers. The doctor must make them better.”
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Imagine that, going to a doctor and asking him to fix your disease. I can't imagine this "new" research is any better conducted than her previous work anyway. "Persistent physical complaints" in Dutch abbreviates to ALK which is our term for MUS btw.
 
Solstice said:
Imagine that, going to a doctor and asking him to fix your disease. I can't imagine this "new" research is any better conducted than her previous work anyway. "Persistent physical complaints" in Dutch abbreviates to ALK which is our term for MUS btw.
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Well this makes a lot of sense. People with explained illnesses are much more in control of their lives than people with idiopathic ones. They are more likely to have:
  • Emotional support of family
  • Recognition by broader society
  • Doctors who care enough to try treatments or write referrals
  • Real treatment options
  • A feeling the disease is not their fault
  • A sense of dignity
Further, people with explained illnesses may tend to have symptoms affecting one body part or system, while people with idiopathic illnesses may have symptoms affecting the entire body, resulting in more severe activity limitations. (PEM is perhaps the most extreme example of this)

People with ME seem a lot more emotionally "beat up" than people with other illnesses, even things like terminal cancer or ALS. It may be because of ME/CFS not inspiring loves ones to assist, the difficulty of understanding it, the defeating nature of PEM, traumas secondary to the disease process (medical abuse or neglect, loss of financial security, etc.), and the non-lethal nature of ME (people may have decades of distressing experiences and/or expect decades more)
 
Solstice said:
Imagine that, going to a doctor and asking him to fix your disease. I can't imagine this "new" research is any better conducted than her previous work anyway. "Persistent physical complaints" in Dutch abbreviates to ALK which is our term for MUS btw.
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What a weirdo thing for anyone to say about someone else. I'd like to see the phrases and see if it is exactly the language style that would be seen as 'objective' if used by a physician.

And I don't know how she got away with saying 'the group who got no treatment out of all these illnesses' were only different in their 'outlook' explaining why they were 'waiting for something to change their symptoms' vs eg someone with ... you know a department that actually treats clinically, well, to the extent they have biomedical doctors not just measuring outcomes but reporting on them, actually treating them.

Maybe if she took all of those illnesses that she has listed banned all of those illnesses from either receiving treatment or having any hope of ever doing so, put them into behavioural treatment with daily questionnaires for 6months and compared answers then she could claim what she is suggesting.

Otherwise she is simply showing the impact of them and their psychological and physical consequences of their own behaviour onto people. But that would be what clinicians who had to measure outcomes and consequences of their actions, and report on them, would think of doing. Not those who chose something else?
 
4 new grants for Long-Covid research have been announced https://www.zonmw.nl/nl/nieuws/star...ing-subsidieoproepen-onderzoeksprogramma-post.

The 4 projects will be:
  1. Characterization of aberrant immune response in post-COVID using innovative STP technology
  2. Development of a Diagnostic Tool for Long COVID based on Specific Autoantibodies (DEDICATE)
  3. Unraveling Immunological & Virological Dysregulation Underlying Post-COVID Pathophysiology
  4. LIBERATE: From Inflammation Biomarkers to Remodeling (FAPI PET/CT) towards personalized diagnosis
The first project will be using a new technology to analyse Signal Transduction Pathways (STPs), I'm not familar with the principal investigator Dr. W.A. (Wim) Dik. Projects 2. and 3. are projects by the group of den Dunnen respectively of the group of Hellemonds whose work has been discussed on this forum and whose projects also received funding from stichtinglongcovid. Project 4 is a project that will use a new FAPI PET/CT scan that can identify inflammation in the tissue. This research is led by AH Maitland-van der Zee, whose research I'm not familar with, but who has published quite a bit on Long-Covid and who seems to be familiar with different phenotypes of LC as well as ME/CFS.

It seems the funding by stichtinglongcovid might have played a role as well as 2 of their 4 projects received further funding. Seems like a great idea for patient organisations to set up funding and pipe lines to fund research until government grants arrive.

Unfortunately, the research by Wüst/Appelman/van Vugt didn't receive a grant even though they applied for one (edit: at least I believe so based on what I was told).

The good news is of course that Knoop and Rosmalen received no funding.



 
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Grigor said:
Did they mention somewhere that they applied for funding?
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Van Vugt told me in a conversation a couple of months ago that they applied for a new grant in a new government funding round so that they could continue their IDO2 work in LC. It is my interpretation that they meant these grants, because I'm not aware of any other funding (but it still means it's speculative and I certainly wouldn't post anything related on social media).
 
EndME said:
4 new grants for Long-Covid research have been announced https://www.zonmw.nl/nl/nieuws/star...ing-subsidieoproepen-onderzoeksprogramma-post.

The 4 projects will be:
  1. Characterization of aberrant immune response in post-COVID using innovative STP technology
  2. Development of a Diagnostic Tool for Long COVID based on Specific Autoantibodies (DEDICATE)
  3. Unraveling Immunological & Virological Dysregulation Underlying Post-COVID Pathophysiology
  4. LIBERATE: From Inflammation Biomarkers to Remodeling (FAPI PET/CT) towards personalized diagnosis
The first project will be using a new technology to analyse Signal Transduction Pathways (STPs), I'm not familar with the principal investigator Dr. W.A. (Wim) Dik. Projects 2. and 3. are projects by the group of den Dunnen respectively of the group of Hellemonds whose work has been discussed on this forum and whose projects also received funding from stichtinglongcovid. Project 4 is a project that will use a new FAPI PET/CT scan that can identify inflammation in the tissue. This research is led by AH Maitland-van der Zee, whose research I'm not familar with, but who has published quite a bit on Long-Covid and who seems to be familiar with different phenotypes of LC as well as ME/CFS.

It seems the funding by stichtinglongcovid might have played a role as well as 2 of their 4 projects received further funding. Seems like a great idea for patient organisations to set up funding and pipe lines to fund research until government grants arrive.

Unfortunately, the research by Wüst/Appelman/van Vugt didn't receive a grant even though they applied for one (edit: at least I believe so based on what I was told).

The good news is of course that Knoop and Rosmalen received no funding.
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I'd happily put in money for ME research in the Netherlands as it's one of the few things I can do. Wouldn't know where to start though.
 
Solstice said:
I'd happily put in money for ME research in the Netherlands as it's one of the few things I can do. Wouldn't know where to start though.
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Yes, strange, I would not know either, and I am sick for more than a decade.

ME CVS Vereniging would surely know.
This is their Funding page.
https://me-cvsvereniging.nl/mecvs-vereniging/giftendonaties/

I’m sure one of these people can answer you for specific ME CFS funds - if there are any.
https://me-cvsvereniging.nl/mecvs-vereniging/wie-we-zijn/
 
Trigger warning - euthanasia

https://www.rtlnieuws.nl/nieuws/artikel/5425260/lauren-hoeve-vermoeidheidsziekte-me-cvs-euthanasie

Eating an oliebol for the last time with her parents, playing a game of 30 Seconds with her best friend. These are the wishes of Lauren Hoeve (28) today. She has the multisystem disease ME and spends most of her time in bed. The disease is progressive and has not been treated. That is why she opted for euthanasia. "Then I finally have peace."

Hard hitting article about Lauren Hoeve. Lauren did well in getting across how horrible this disease is. I doubt she reads here but I hope she gets the peace she's after.

Added spoilers.
 
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