News from The Netherlands

Thanks, I'll watch it on the telly later today. What the psychologist says about getting people to move again when they've been on the couch just doesn't make sense to me in any form. Surely if someone who was previously active remains on the couch, that should then be an indication that something's wrong. Not that they need someone like her to tell them to get moving again.
 
Solstice said:
What the psychologist says about getting people to move again when they've been on the couch just doesn't make sense to me in any form. Surely if someone who was previously active remains on the couch, that should then be an indication that something's wrong. Not that they need someone like her to tell them to get moving again.
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Ironically, this has been the main consequence of medicine "accepting" depression over the last few decades, but framing it mainly as a motivation/mood issue. They can too easily blame anything on the same idea. And it's true for some, but they can't tell the difference, and have collectively decided that it doesn't matter, fueled mainly by also deciding that since they can't rigorously assess biopsychosocial treatments, then that actually makes them even more rigorous.

Still stuck on the "nothing wrong with those patients" dogma, unable to process that it's them who can't figure out what is wrong, and believing that it gives them a free pass to assert that nothing could be found even if they tried. Ironically again, this has lead to learned helplessness, the idea that it's not worth trying to figure it out since they're convinced that they'd fail anyway.
 
I was unfair to the psychologist in this episode. At least with regards to what she said here, I don't know her work. She was talking in the "us"-sense. Meaning that telling people to move was what the profession was doing, she says very plainly that they were wrong.

There are a lot of good takeaways other than that after watching the whole thing. ME/CVS gets a couple mentions as do post-Lyme and other PAIS. There are a lot of parents of children in the program and a few children themselves who make an emphatic case for having expertise-centers for treating LC or PAIS in a broader sense. Kuipers gets slagged off several times, which I always like, he's been the minister of health that has let things go to shit.

There's a talk with a doctor at an Italian clinic where they are already treating POTS and chronic headaches in children. There's also some off-label stuff happening. The doctor makes the case that any such treatment should be documented in detail at facilities around the world so that data can be compared and wheat can be separated from chaff. He also dismisses the psychological approach in straightforward terms a couple times.

At the end there's a politician from the green party that says he's admitting an amendment for a vote on Wednesday. The amendment will be about setting up expertise-centers for LC or for PAIS, I didn't quite get that. There's apparently budget that was meant for covid left over in last years budget. A number of parties have already aligned with him. Some others on the other end of the political spectrum were banging this drum quite loudly in the run-up to elections and there was a lot of not-so-subtle reminding them of what they said. Which imo is good.

I probably forgot a lot of stuff that was talked about, but I think this covers the gist of it.
 
Good article written by a psychiatrist (Tom Molmans, @Molbaas on Twitter) that does not mince words about the need to recognize that medicine has done explicit harm to chronic illness sufferers as a necessary condition to making progress for us and in Long Covid.

Opinion: Think about what went wrong, only then can we really help post-covid patients
Paywall ladder: https://archive.is/DL5L7
https://www.volkskrant.nl/columns-o...patienten-met-postcovid-echt-helpen~ba0198f3/

There is finally more attention for post-covid. But as long as doctors and society do not recognize that post-infectious diseases are often confused with psychological complaints, the help provided to patients will be inadequate.

It was also discussed on the radio. For example, Jolande Sap, chairman of the Social Impact Team (MIT) was able to repeat again on the radio program Spraakmakers - in view of the budget discussion of the Ministry of Health this week - that she already sounded the alarm in June 2023. I myself said there that we cannot sufficiently help people with long Covid, or post-Covid syndrome, as long as we do not consider the harmful role that medicine and society have had (and still have) in the physical and psychological treatment of post-infectious diseases.
...
We can start by stopping confusing post-infectious conditions with mental or psychiatric conditions. Although both are important and – as in all systemic diseases – there is overlap. And we can do that by stopping with these conditions and using the reporting about them for other purposes, to disguise our own fallibility. Because no matter how bad it may be, we should reflect on what went wrong and how it continues to have an effect. And how healing and connecting it can be to recognize that.​
 
Solstice said:
At the end there's a politician from the green party that says he's admitting an amendment for a vote on Wednesday. The amendment will be about setting up expertise-centers for LC or for PAIS, I didn't quite get that. There's apparently budget that was meant for covid left over in last years budget. A number of parties have already aligned with him. Some others on the other end of the political spectrum were banging this drum quite loudly in the run-up to elections and there was a lot of not-so-subtle reminding them of what they said. Which imo is good.
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The vote will be on the 15th of February.
 
Was looking at the press release from the NOS, filled to the brim with bots. Twitter-handles ending in a series of numbers are a dead giveaway in that regard. Good reminder to avoid that platform.
 
A new trial has been launched in the Netherlands

Treatment of Post-COVID With Hyperbaric Oxygen Therapy: a Randomized, Controlled Trial.

I don't know how well such a trial can be placebo-controlled, but given that very vague studies by the Efrati group have already been conducted on this subject, I don't see much added value in doing a study with a control group of standard care alone, i.e. no care at all, which just leads to recreating these less valuable studies.

The do have some objective outcome measures though:
  • Activity tracking (through wrist band), monitoring heart rate, step count and sleep patterns [ Time Frame: Worn continuously until week 34 ]
  • Biochemical parameters [ Time Frame: Week 0, 8 and 34 (i.e. at start of HBOT, directly after HBO and 3-months after treatment)
  • Absence from work
Activity tracking via wrist bands (especially for sleep patterns) is often known to be highly unreliable so one will have to see what kind of data they can get out of that.
 
Dolphin said:
Fibromyalgia Report Dutch Health Council (Translation from Dutch to English).

Go to,

https://www-gezondheidsraad-nl.tran...romyalgie?_x_tr_sl=nl&_x_tr_tl=en&_x_tr_hl=en

https://www-gezondheidsraad-nl.tran...romyalgie?_x_tr_sl=nl&_x_tr_tl=en&_x_tr_hl=en
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and dont miss this bit

It is not fully understood what causes fibromyalgia and influences its course. The current view in the scientific literature is that various biological, psychological and social factors play a role in the development and continuation of the complaints.
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looks like the BPS lobby have been busy in the Netherlands
 
It is not fully understood what causes fibromyalgia and influences its course. The current view in the scientific literature is that various biological, psychological and social factors play a role in the development and continuation of the complaints.

Short version: We don't know. We got nothing.
 
Sean said:
It is not fully understood what causes fibromyalgia and influences its course. The current view in the scientific literature is that various biological, psychological and social factors play a role in the development and continuation of the complaints.

Short version: We don't know. We got nothing.
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Rather it should read ‘current assertion in one narrow and incessantly self referential section of the scientific literature is that various biological, psychological and social factors play a role in the development and continuation of the complaints though really we believe its all in their heads’
 
The summary mentions that CSS is the dominant theory in the field. The theory might be able to explain other symptoms as well. The more I read, the more it enrages me.

They mention that some interventions give some results. They also mentions that the reliability of the evidence is generally low. And then they go on about how the interventions are going to be used anyway. I haven't read what interventions they mean, but I can take a good guess.

Why can't they just hold their hands up and say, hey, we've ignored you guys for more than 50 years so we have nothing. Or even without the admission of guilt, just say that you don't have good treatments for patients. Offer support and other than that leave the patients alone.
 
Tramadol and cyclobenzaprine are contraindicated according to the summary because they have side effects and might lead to addiction. I don't know if this is sound advice, but it is followed by saying that non-medicinal interventions should be the first line of treatment. The way it's written makes it sound like a given that those sort of treatments can do no harm. The sheer ignorance....
 


I've responded to their tweet. Does anyone in here know if FM patients are organized and if so, where? These guidelines have me worried for them, but they could also have implications for us as they are saying pain isn't the only thing they can treat in the BPS way.
 
That FES organization looks a lot like the Dutch ME Stichting. The one helping out Rosmalen with her MELines project. I couldn't find any other organizations for FM patients in the Netherlands so far. Have emailed the ME/CVS Vereniging(good guys), if they know anything. But since that's run by patients I imagine they have their plates full.

The fibromyalgie.nl website looks decent enough btw, FM patients apparently also fall under the banner of organizations focusing on rheuma. It still looks to me that they're quietly abandoned though, with very little resources to fight for their rights and also very little visibility basically anywhere.
 
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