News from The Netherlands

ME Research UK

News from The Netherlands - the ME/CFS Cohort and Biobank consortium (NMCB) has begun and eventually 6 projects will focus on biomedical research into ME/CFS. One of these is The Netherlands Brain Bank for ME/CFS (NHB-ME/CFS) which aims to collect brain tissue and make samples available to researchers worldwide.

Currently, 20 people with ME/CFS are already registered with The Netherlands Brain Bank and a call within The Netherlands has been made for more donors. https://tinyurl.com/y8h86bsj



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The Netherlands ME/CFS Cohort and Biobank (NMCB) consortium
 
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Some organization that calls itself (translated) "Association against quackery" is criticizing what is essentially the biopsychosocial model exactly as applied to us, seemingly unaware that this borrows entirely from, well, medicine. They don't seem to have noticed.

The therapists doing this all simply borrow straight from the BPS playbook. Don't even have to change anything. Medicine created the most potent pseudoscience by... creating their own. Ah well.

BMR Methods Confused Bullshit
https://www.kwakzalverij.nl/nieuws/bmr-methodes-warrige-lariekoek/

Dozens of therapists claim to be able to tackle psychological complaints such as burnout and anxiety disorders with BMR (Body Mind Release or Body Mind Reset).

The BMR methods could be used to treat psychiatric/medical disorders, the inventors claim without providing adequate evidence. And according to the BMR treatment list of both inventors, we are talking about psychological complaints, burnout, stress, behavioral problems, PTSD, eating disorders, depression, anxiety and anxiety disorder and trauma processing.

These are unproven quackery claims in which untrained therapists move in often complicated medical/psychiatric terrain. Some psychiatrists consulted have not heard of either MMR method before, there are no serious studies into their effectiveness. The medical database PubMed does not know either MMR method or their inventors, which reduces the credibility to zero.
...
Both BMR methods are very similar to Neuro Linguistic Programming (NLP) , the technique that tsjakka-patatman Emile Ratelband brought from the US to the Netherlands in the eighties. Willem Levelt, now emeritus professor of psycholinguistics, branded NLP 'nonsense' in the magazine Skepter twenty years ago . A label that should actually be stuck on both BMR variants.

It is therefore all the more strange that the official government agency UWV uses BMR therapists in the context of reintegration processes. We have previously written on this website about the detested STAP scheme of UWV, which uncritically financed quackery. The only substantiation UWV has behind the application of BMR – the release variant – is an extremely high we-of-toilet-duck content study. We will come back to this later.​


It is therefore not strange. Since this is all coming straight from psychiatry and neurology. It's official medicine, there is no longer any real difference between scientific medicine and alternative medicine, because everywhere science has not yet given answers, they created their own damn pseudoscience.

I don't see them realize the scope of what they've done for many decades, the blind are leading the blind to where the blind have been looping around for decades. It's a well-worn path, but paved on with the bodies of millions.
 
Like, are they aware that the chief medical scientist of their country, whatever her title is, is a huge fan of this stuff? Is heavily promoting it? I guess not.
 
So it would be more fair to call them The Association against some quackery but for some other forms.

I think the person I was thinking of is in Norway, the head of medical science that saying bad things about us. Ah well, they are so interchangeable.
 
From the announcement above:
Dynamic treatment plan
A working group of post-COVID experts has developed a care pathway together with patient organizations in recent months. Based on scientific literature, experiences at home and abroad and expert opinion, agreements on diagnostics and the most promising treatments that will be applied have been named. This care pathway is adjusted by constant evaluation with the most recent knowledge, insights and developments.

The scientific research into new treatment methods and the underlying pathology is coordinated by the PCNN, with which the centers of expertise work closely together. The translation of research results into recommendations for practice will be carried out by the UMCs and the Post-Covid Expertise Team of the Federation of Medical Specialists in collaboration with the NHG and the Knowledge Institute. In addition, the knowledge acquired in the centers of expertise should also benefit patients with other post-acute infectious syndromes (PAIS) in the long term. This makes the care for and research into patients with post-COVID, and ultimately all PAIS patients, unique in the world.

Care for children
The opening of post-COVID expertise centres for children is currently being worked on by the UMC Utrecht, Amsterdam UMC and Maastricht UMC+. Here too, the knowledge gained will be shared as soon as possible in order to scale up this care as quickly as possible and to disseminate knowledge. To this end, close cooperation is taking place with the Dutch Association for Paediatrics (NVK) and patient organisations.
Is this a good thing? Does anyone know what the care pathway includes? Possible even just the idea that they have treatments to offer, and the seeming lack of differentiation of various post-covid effects (e.g. 'patients with post-COVID') is a bad sign. Are there any people involved whose names we would recognise?
 
Not all patients with long covid symptoms can go to the expertise center. Specific requirements apply. “The patients must have had symptoms for at least a year after a corona infection,”
Oddly arbitrary. Also at this point remission and recovery are rather rare so they will be especially useless. The trend over recent years and the data from LC has been that 3 months is more than enough. I guess this is one way of triaging people to reduce demand, but since the overall policy is constant mass reinfections even that won't be nearly enough. And anyway they don't know what to do because they can't be bothered to put effort into it.
For example, if you already have rheumatism and the symptoms of the rheumatism worsen, then that does not fall under post covid. It really has to be a new condition that was previously unknown,
So are ME/CFS, IBS, fibromyalgia, dysautonomia and the rest of what is usually labeled for this type of illness unknown? Or is it "unknown" (winky face)? Also of course it falls under Long Covid, what is this nonsense?
The first patients with long covid have been ill for over four years now. They often struggle with extreme fatigue after exertion, concentration problems, brain fog and/or palpitations. According to the Ministry of Health, Welfare and Sport, around 450,000 Dutch people are struggling with post-covid, of which 90,000 people are so seriously ill that they have to go to a long covid clinic.
Oh, definitely previously unknown. Never heard of that before. Can't hear you with my whole arms up my ears lalalalala.
“We are flooded with registrations, but we can only really start planning from Friday. That is because we coordinate it nationally,”
Hey it's only getting close to 5 years and has been subject to deep controversy for decades, was predicted from the start and y'all are still completely oblivious to the scale of the problem. No need to hurry. Take all the time in the world like you always do here.
 
Dutch News: 10,000 Long Covid patients on benefits, more may follow

Some four years after the beginning of the Covid pandemic some 10,000 Long Covid sufferers are living on benefits because they are unable to work or work fulltime, figures from state benefits agency UWV have shown.

The cost associated with the benefits is some €200 million a year and, in the absence of a cure for Long Covid, this is likely to become a structural expense, insurance doctor and lawyer Jim Faas told the Volkskrant.

The figures show how invisible the problem is, Alfons Olde Loohuis of post Covid support organisation C-support told the paper. “I know young people who have been bedridden for four years. They don’t feel heard or seen. They have a mysterious disease which doctors can’t cure,” he said.

On Friday, three post Covid centres will open their doors at teaching hospitals in Maastricht, Amsterdam and Rotterdam to measure the effect of existing medication such as anti-allergy medication, anti-depressants and beta blockers which may alleviate symptoms.

Some 32,000 Long Covid patients have been registered so far and some 300 are registering every month, Olde Loohuis said.

Costing €200 million a year (conservatively) and we're about to trial "anti-allergy medication, anti-depressants and beta blockers which may alleviate symptoms"
 
My country has always been known to be on the penny.
And now at the 200 million euro mark they "see" 10.000 long Covid sufferers?
The patients or the costs?
That's what I call (covid) dumbing down government.
ME/CFS is still a "between the ears" thing here.
I'm feeling for LC patients having to rely on those centers.
Nothing to offer than; let's try "something"?
 
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