News from The Netherlands

https://www.singeluitgeverijen.nl/de-geus/boek/de-achterblijvers/

The stragglers
About the forgotten pandemic of long covid
Anne Vroegindeweij
For countless people, the pandemic is not over yet. Their lives as they knew them for the time being.



After a mild Covid infection, Anne Vroegindeweij contracted severe lung Covid. She changed from an energetic young woman to someone who becomes so overstimulated from a short walk that she is sick for days. And like them there are many others. She keeps in touch with fellow sufferers online and closely follows scientific research, while she waits in isolation for a treatment that works.

She makes a bitter discovery: long Covid is not unique, but resembles other post-infectious diseases, such as ME and chronic Lyme. Thanks to a combination of medical misinterpretations and misogyny, these diseases have been barely taken seriously and treated incorrectly for years. There has also been insufficient research done into this. And despite that history, we are now making the same mistakes.

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----

De achterblijvers
Over de vergeten pandemie van long covid
Anne Vroegindeweij
Voor talloze mensen is de pandemie nog niet voorbij. Hun leven zoals ze dat kenden voorlopig wel.



Na een milde covidbesmetting liep Anne Vroegindeweij zware long covid op. Ze veranderde van een energieke jonge vrouw in iemand die al van een korte wandeling zo overprikkeld raakt dat ze er dagenlang ziek van is. En zoals zij zijn er vele anderen. Online houdt ze contact met lotgenoten en volgt ze het wetenschappelijk onderzoek op de voet, terwijl ze in isolement wacht op een behandeling die werkt.

Ze doet een wrange ontdekking: long covid is niet uniek, maar lijkt op andere postinfectieuze ziektes, zoals ME en chronische lyme. Die ziektes zijn dankzij een combinatie van medische misinterpretaties en misogynie jarenlang nauwelijks serieus genomen en verkeerd behandeld. Ook is er lang te weinig onderzoek naar gedaan. En ondanks die voorgeschiedenis maken we nu dezelfde fouten.

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  • Luisterboek
  • ISBN: 9789044549829
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  • Paperback
  • ISBN: 9789044548952
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Dutch parliament:

https://www.tweedekamer.nl/debat_en...ergaderingen/details/activiteit?id=2023A05983

Plenary debate: debate about the social impact of post-covid syndrome
The meeting has yet to take place

View daily overview
October 4, 2023
6:45 PM - 11:00 PM
Room: Plenary room
Appendix
Matters to be dealt with
  1. 1

    Regulations for healthcare workers with long-term post-COVID complaints
  2. 2

    [paste:font size="4"]Research and knowledge sharing program post-COVID
    [/paste:font]
  3. 3

    MIT Advisory: Social Consequences of Long Covid
------



Delen
Delen
Plenair debat : debat over de maatschappelijke impact van het postcovidsyndroom

De vergadering moet nog plaatsvinden

Bekijk dagoverzicht
4 oktober 2023
18:45 - 23:00 uur
Zaal: Plenaire zaal
Bijlage

Te behandelen zaken



    • 1

      Regeling zorgmedewerkers met langdurige post-COVID klachten
    • 2

      [paste:font size="4"]Programma onderzoek en kennisdeling post-COVID
      [/paste:font]
    • 3

      MIT-advies: Maatschappelijke gevolgen van Long Covid
Over Tweedekamer.nl

Blijf op de hoogte

Ambtelijke onderste
 
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EndME said:
Upcoming symposium in Amsterdam on October 19 :https://turncovid.nl/covid-19-symposium/.
Presenters include: Michele van Vugt, Brent Appelman, Jeroen den Dunnen, Merel Hellemons and Rene Lutter as well as a humor section by the well known con artist Hans Knoop.
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Only know Knoop out of those. From a quick google I found that their areas of expertise seem to be:

Michele van Vugt:

PROF.DR.

Medical Specialist, Internal medicine

https://www.amsterdamumc.org/en/research/researchers/michele-van-vugt.htm
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On her Dutch page it says she trains students in infectious diseases.


Brent Appelman:

Standard PhD Candidate, AII - Infectious diseases
MD-PhD, Center of Experimental and Molecular Medicine
Standard PhD Candidate, Graduate School

https://www.amsterdamumc.org/en/research/researchers/brent-appelman.htm
Click to expand...




Jeroen den Dunnen:

Associate Professor, AGEM - Amsterdam Gastroenterology Endocrinology Metabolism
Associate Professor, AII - Infectious diseases
Associate Professor, AII - Inflammatory diseases
Associate Professor, Infectious diseases

https://www.amsterdamumc.org/en/research/researchers/jeroen-den-dunnen.htm
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Merel Hellemons seems to work at Erasmus MC on lung diseases, the only pages I found about her were in Dutch and I'm not up to translating much.

Rene Lutter:

PhD
Assistant Professor, AII - Infectious diseases
Associate Professor, AII - Inflammatory diseases
Full Professor, Pulmonology

https://www.amsterdamumc.org/en/research/researchers/rene-lutter.htm
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Seems like all of em bar Knoop do biomedical research, but I haven't looked that far tbh.
 
Here are some details @Solstice.

Solstice said:
Michele van Vugt:
Click to expand...

Michele van Vugt is a clinical collaborator of Rob Wüst. She runs the Long Covid center at the Amsterdam UMC. See https://www.s4me.info/threads/muscle-abnormalities-contribute-to-post-exertional-malaise-in-long-covid-2023-wüst-van-vugt-appelman-et-al.34994/#post-491414 and https://www.s4me.info/threads/prolo...2-infection-2023-guo-et-al.34402/#post-485989 for some information on the work Wüsts group does.

Brent Appelman:
Click to expand...

Appelman also belongs to the Rob Wüst group. He will be presenting their Muscle-PASC work. Their work is currently being expanded to ME/CFS https://projecten.zonmw.nl/nl/proje...-post-exertionele-malaise-patienten-met-mecvs.

Jeroen den Dunnen:
Click to expand...
Works on autoimmunity both in ME/CFS and Long-Covid. His recent work seems to have been centered around a mouse model of Long-Covid, in which autoantibodies allegedly reproduced symptoms of Long-Covid. His current project tries to do the same for ME/CFS. The mouse model work on Long-Covid will be published shortly.

Merel Hellemons seems to work at Erasmus MC on lung diseases, the only pages I found about her were in Dutch and I'm not up to translating much.
Click to expand...

Merel Hellemons is a very vocal Long-Covid researcher fighting for adequate biomedical research in the Netherlands. She runs the Long-Covid clinic in Rotterdam and has been studying neuroinflammation in Long-Covid. She also was part of the recent response to the CBT work of Knoop (unfortunately, van Vugt and Appelman were part of that work as well).

Rene Lutter
Click to expand...

He was part of the recent Appelman/Wüst/van Vugt work on IDO2 and was looking at drugs targeting the mechanisms found in that study.
 
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What's remarkable is that Brent Appelman and Michele van Vugt also collaborated on Knoop and Kuut's ReCOVer CBT for ME trial.

And I haven't seen it, but a patient told me that Wüst a while back got irritated and defended Rosmalen when the scandal on the ME/CFS Lines grant broke; I also have a screenshot of a tweet of his of July 2022* where he says: "Just received patient feedback on a ZonMw [grant] request on ME/CFS. Why does there have to be criticism on every small insignificant detail?* Don't patients want us to do research on their illness? Venting a little..."

[lit translated: why does there have to be put salt on all snails?]

I think this might be illustrative of the situation in The Netherlands ME-wise: the psychosomatic narrative still has the dominant hold, and people like Knoop, Rosmalen and Van der Meer have a prominent position. Plus there is far-going collegiality and loyalty among academics in this small country: criticism can cost you promotion and grant approval, as it's a small world.

So even biomedical researchers are still steeped in the narrative of Knoop, Rosmalen, Van der Meer et al., thinking it is legit to take a psychosomatic, disablist approach. I hope (and expect, but really not 100%) they will do better after more contact with the international ME/CFS research community and more understanding of what has been happening.



*edited to add that afaik he deleted that tweet at a later time
 
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Arvo said:
What's remarkable is that Brent Appelman and Michele van Vugt also collaborated on Knoop and Kuut's ReCOVer CBT for ME trial.

And I haven't seen it, but a patient told me that Wüst a while back got irritated and defended Rosmalen when the scandal on the ME/CFS Lines grant broke; I also have a screenshot of a tweet of his of July 2022 where he says: "Just received patient feedback on a ZonMw [grant] request on ME/CFS. Why does there have to be criticism on every small insignificant detail?* Don't patients want us to do research on their illness? Venting a little..."

[lit translated: why does there have to be put salt on all snails?]

I think this might be illustrative of the situation in The Netherlands ME-wise: the psychosomatic narrative still has the dominant hold, and people like Knoop, Rosmalen and Van der Meer have a prominent position. Plus there is far-going collegiality and loyalty among academics in this small country: criticism can cost you promotion and grant approval, as it's a small world.

So even biomedical researchers are still steeped in the narrative of Knoop, Rosmalen, Van der Meer et al., thinking it is legit to take a psychosomatic, disablist approach. I hope (and expect, but really not 100%) they will do better after more contact with the international ME/CFS research community and more understanding of what has been happening.
Click to expand...

Can imagine a number of those scientists not fully grasping what they're being roped into by leading BPS figures.

I reckon the people on the ME Lines project probably thought they'd be doing important work for example. Cindy Boer(geneticist) seemed open to input on twitter but went schtum after a couple of posts directed at her, outlining just how bad the situation was. There's 4.4 million dedicated to that project, which is a lot of funding. If patients had their way the project would be cancelled, and rightfully so. We have every right to be very angry at the decisions made, but I can imagine it can come as bit of a shock if you've only heard the Rosmalen side of the story.

Similarly Ruud Raijmakers doesn't seem to be of bad intent. But he started out in Nijmegen where the NKCV was housed and his first few papers seem to have been done in collaboration with leading figures from the NKCV. It might be something he really believes in or it might be born out of necessity with him trying to do biomedical work on the side while appeasing the dominant BPS-clique.

At this point I don't know, but it has been holding us back for decades of course and still does to this day.
 
Arvo said:
And I haven't seen it, but a patient told me that Wüst a while back got irritated and defended Rosmalen when the scandal on the ME/CFS Lines grant broke; I also have a screenshot of a tweet of his of July 2022 where he says: "Just received patient feedback on a ZonMw [grant] request on ME/CFS. Why does there have to be criticism on every small insignificant detail?* Don't patients want us to do research on their illness? Venting a little..."

[lit translated: why does there have to be put salt on all snails?]
Click to expand...

Thanks for sharing that, I wasn't aware of the patient feedback but had read these Tweets www.twitter.com/RobWust/status/1644202526235844609, www.twitter.com/RobWust/status/1650759252644962308, in defence of the LifeLines cohort, which might be very sensible if you aren't aware of the history of ME/CFS from a patients perspective rather than their colleagues perspective. Perhaps this is also something us patients can in some cases try to do differently. Instead of writing something rather hastly on Twitter, writing a well-rounded response by email to things we see as problematic to those researcher who seem to have a genuine interest and gathering information on this forum to do so (I'm also fully aware that patient input, participation or perspective was not appreciated in the Lifelines cohort and has essentially been forbidden).

My personal impression (which might be very personal or could even be a complete misinterpretation) I got when talking to some members of Rob Wüst's team is essentially, that it seems they always used to think that both ME/CFS and Long-Covid are psychosomatic (what else are they supposed to think if everyone in their education system always said this with Knoop, Rosmalen and others being very prominent), but that very recently their own findings in the Long-Covid muscle study have changed that view as they believe they are seeing physical abnormalities.

I agree that all of these things as you both say, are just a reflection of the current state of research into ME/CFS in the Netherlands, rather than a reflection of the researchers that are genuinely interested.

Other than that I've so far been quite impressed by Merel Hellemons. There's only very little I can see from a far, but what I've seen in her response to the CBT trial, her presence in the media as well as her activity on Twitter has been remarkably excellent for me.
 
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EndME said:
My personal impression (which might be very personal or could even be a complete misinterpretation) I got when talking to some members of Rob Wüst's team is essentially, that it seems they always used to think that both ME/CFS and Long-Covid are psychosomatic (what else are they supposed to think if everyone in their education system always said this with Knoop, Rosmalen and others being very prominent), but that very recently their own findings in the Long-Covid muscle study have changed that view as they believe they are seeing physical abnormalities.
Click to expand...

If that is true then it pisses me off. I have some patience with uninvolved researchers thinking the psychosomatic CBT industry tosh is legit: its promotors are smooth talkers and present themselves as experts and colleagues that base their views on science, so I get that, at least until the last years, if you knew nothing about ME and did not know any patients personally, you'd think the pseudo-experts are the experts. Disablism is also incredibly normalized so it doesn't ring alarm bells. And in The Netherlands this shit is still very dominant.

But if it's true that it's their own muscle study that is now starting to change their mind then under what rock they have been living until they got the outcomes of their own study? I know the dutch science reporting is often nationalistically oriented (if it's not discovered/found by us it hardly gets attention if any, like we're living under a cheese cover), but if this is happening with individial researchers as well then this is quite shocking. Did they not read up on Long Covid science? Did they not have direct personal contact with patients, understanding Long COVID via their experience? What would have happened if they had had no positive results, if their methods had not shown them physical abnormalities? They'd still think it psychosomatic?

I'm glad they're starting to understand this is a physical issue, but damn, this should not have to depend on a researcher's personal journey or positive study outcomes.
 
EndME said:
I wasn't aware of the patient feedback but had read these Tweets www.twitter.com/RobWust/status/1644202526235844609, www.twitter.com/RobWust/status/1650759252644962308, in defence of the LifeLines cohort, which might be very sensible if you aren't aware of the history of ME/CFS from a patients perspective rather than their colleagues perspective.
Click to expand...

The tweets (including the one I mentioned earlier) are:

Rob Wüst 22nd of July, deleted -
"Net patiënten feedback ontvangen van een [@]ZonMw aanvraag over #MECVS. Waarom moet er op alle slakken zout gelegd worden? Willen patiënten dan niet dat we onderzoek naar hun ziekte doen?? Beetje stoom afblazen..."

"Just received patient feedback on a ZonMw [grant] request on ME/CFS. Why does there have to be criticism on every small insignificant detail?* Don't patients want us to research their disease? Venting a little..."

[*lit translated: why does there have to be put salt on all snails?]
Click to expand...

Rob Wüst 7th of April 2023 -
"Als er alleen maar stront overheen gegooid wordt door patiënten gaan deze onderzoekers echt niet “gezellig door” om al hun onderzoekstijd en energie in deze ziekte te steken. Dan zijn er 100-en andere dingen die ook onderzocht kunnen worden voor andere ziekten"

"If patients only throw shit at it, these researchers will certainly not continue to invest all their research time and energy into this disease. Then there are 100's of other things that can also be investigated for other diseases"
Click to expand...

Rob Wüst 25th of April 2023 -
"Hoi Peter, de samenwerking met Lifelines is echt heel goed hoor. Als onderzoekers zien we alleen maar voordelen om met de collega’s in Groningen samen te werken."

"Hi Peter, the collaboration with Lifelines is really good. As researchers, we only see advantages in working with the colleagues in Groningen."
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I hope it gets better, but I do not like his past attitude towards patients, like they should be endlessly grateful and should not criticise research on their own disease which their lives depend on. I particularly find the "if you do not play nice and know your place researchers will dump you" attitude distasteful and hostile.

I really hope he'll look back at this an be embarrased, understanding how wrong this is.
 
Solstice said:
Can imagine a number of those scientists not fully grasping what they're being roped into by leading BPS figures.
Click to expand...

In the case of Cindy Boer you mention, yes, I reckon that's indeed what happened. (Although I am still very disappointed at what she did when this was pointed out at her, it is a sad state of affairs because she really looks like a promising young researcher.)

In case of Raijmakers I find this a lot less probable. The man's a member of COFFI and is currently part of an attempt to revive the Oxford research criteria (for a bunch of diseases it was never meant to cover even, Lyme disease is not characterized by fatigue FFS). I can see no good faith explanation for his activities.
 
Anybody claiming to have any expertise or interest in this area can no longer claim they do not know the real situation. The evidence is stark and overwhelming.

What people like Wüst are struggling with is facing up to just how bad that situation is for patients, how medicine has so persistently botched the handling of this disease, and just how ferociously resistant it is to the long overdue hard reforms required to get the show back on the road.

If he can't handle the heat, he should get out of the kitchen. Lucky him that he has that option. Patients don't.
 
Sean said:
Anybody claiming to have any expertise or interest in this area can no longer claim they do not know the real situation. The evidence is stark and overwhelming.

What people like Wüst are struggling with is facing up to just how bad that situation is for patients, how medicine has so persistently botched the handling of this disease, and just how ferociously resistant it is to the long overdue hard reforms required to get the show back on the road.

If he can't handle the heat, he should get out of the kitchen. Lucky him that he has that option. Patients don't.
Click to expand...

To be fair to him, he actually does good work. I think there's a vid in this thread somewhere or in one of the LC-topics that features him amongst others and he shows how long-haulers have an abnormal response to exercise and how it isn't wise to have these people exercising. His research on LC and ME/CFS is very good for as far as I know.

I think he on his end has to deal with covid-denialists, lc-denialists etc. So when he sees us complain about the ME Lines biomedical research being done into ME/CFS it might just be a case to him of "here we go again". I hope people have set him straight though with regards to who's who and the deficiencies in working with data-sets based on old CDC-criteria etc.
 
This also speaks further to how much of a(deliberate?) fuck up it was from ZonMw to sideline patients the way they did. Rosmalen gets access to people like Cindy Boer, while we get to respond from afar.

Click to expand...


That's a tweet from Wüst on 5 October btw.

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Pretorius talking about research Wüst's team has done. First response is from a patient saying that the same research is gonna be done on ME/CFS.

I remember from the video posted with him that Wüst showed how much our muscles differed from those of healthy people when zoomed in.
 
Wanted to go back to this one last time. What stands out if you look at ME Research it's almost always done by someone that knows our disease and has seen how the past 10/20/30 years or so have played out. Others will have been made aware of what's happened to us. If you look at different surveys amongst GP's, clinicians etc. most don't have a clue what ME is, and so if they move into our field they aren't aware of the politics that have played out over the years.

I hope we get to a point somewhere in the future where new researchers don't have to first read up on 30 years of politics before they can move on to doing research. Where the right criteria are on offer and only the right criteria are on offer and where people like Rosmalen and others have been completely sidelined, unable to influence the process. I think the situation we have now is because of her and others influence and because ZonMw simply caved to vested interests. Just was reading about a paper from Belgium where the same vested interests were palpable. I hope we can put that in the past sometime soon.

It's good that we now have politicians, researchers, journalists and more fighting for us. Makes me think this is the best chance we've had in eons.
 
The whole thread on the symposium is interesting. Some good bits, some bad bits (like Knoop). Appears to be about COVID in general but LC was very prominent.
I'm at the turn covid symposium today. Unfortunately, a number of tweets were unsuccessful, you understand why. So do it later. https://turncovid.nl/covid-19-symposium/
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https://nitter.net/Pascalgrootveld/status/1714959210528571873

Also: wow is using nitter so much more useful, when you use translate page from the browser it translates the whole page, all the tweets. On twitter I have to re-apply the translation every 4-5 tweets and it's soooo annoying.
 
Grigor said:
During a symposium about (long) Covid today at the Amsterdam MEDICAL Center.

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She continued:

Endowed professor of CBT asks 7 critical questions and concludes with: 'Hans, I told you too. I read your article in CBT with vicarious shame. What are you going to do about those patients who have been so let down with your unnuanced statements?

 
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