Xandra Westerhuis
Research Physician | Sub-Investigator
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Wow, I am amazed by the level of twisting and turning that the BPS movement comes up with to keep pushing their old narrative and to keep ignoring the continuously growing evidence of underlying pathophysiology (which is what we should be investigating instead if you ask me). Tell me you don't listen to your patients without telling me you don't listen to your patients..."PEM is hypothesized to be associated with pathophysiological abnormalities in skeletal muscle, which might be in combination with autonomic dysfunction (ie, hyperactive sympathetic signaling and hypoactive parasympathetic signaling), and could be a result of an imbalance between daily activities and rest." > this sentence started so well and then they end it with a suggestion that is completely unfounded and goes against anything that all long covid patients describe: that after infection they suddenly develop post exertional malaise which actually CAUSES them to struggle with the balance between rest and activity because for some reason suddenly previously easily endured exertion now makes them physically ill. Or this one.."An important notion to make is that, although often applied, pacing has not been proven through clinical trials to be effective as a treatment strategy for PPCC." > maybe because it was never intended as a treatment strategy but a coping strategy to support patients, prevent further progression of the illness and create circ*mstances for possible natural healing. And then again, a whole paragraph supposedly agreeing with current research consensus that pacing is the most efficacious and safe strategy.. and then a few sentences further down they give the clearly harmful advice "to stimulate light activity for 20 minutes a day, such as going for a walk". Which is often not possible while pacing and for many patients will be super harmful. It is impossible to give this kind of generic advice to such a diverse patient group where for some of them sitting upright is already cause for PEM and further progression of their illness.Not a word about symptomatic treatment that can be very supportive. No clear advice about how to pace properly (actually, the opposite). The whole mentioning of PEM and POTS feels forced and not fully understood or believed, as it is then followed by conflicting suggestions and advice. Worst of all, it's a paper for children. My heart bleeds for the children that have been and keep getting harmed by this stubborn field of "research". How I wish more medical professionals would start keeping their Hippocratic oath to first not do harm.
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Anil van der Zee
Former professional ballet dancer.
4d
Thanks for sharing. I had missed this paper. Some bits are quite ok, but I agree with that the parts you're referring to are unhelpful and even harmful. Disappointing to see this from the Netherlands.
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Marie-Thérèse Woltering
Woltering Works (worked)
4d
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Thanks for sharing Xandra Westerhuis. This manipulative behaviour makes me sick to my stomach, even more knowing there is hardly any counter movement. On the contrary, without any medical proof these harmful theories are easily adopted by medicine in general. More so by the Dutch guidelines committees that are so intertwined with this nonsense inventing BPS industry.It's the bias against patients/women/children that provides a fertile basis for those ideas to become successful. IMO that's most harmful, and painful as well.
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Marie-Thérèse Woltering
Woltering Works (worked)
4d
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Nederlandse Vereniging voor Kindergeneeskunde, neem patiënten aub serieus wb dit soort kritieken. Het is inderdaad hartverscheurend te zien hoe steeds opnieuw kinderen onnodig beschadigd worden door slecht geïnformeerde behandelaars (die er neem ik aan ook niet op uit zijn kinderen te beschadigen).
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Ellen van der Leeden
Glass Artist at Atelier Lux Nova ww.lux-nova.nl
3d
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Thank you for your effort.SarsCov2 kills.A ‘slow death’ is torture- but death means just that. Death. Which is apparently a revenu model for the BPS crew. #BPSsucks
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Xandra Westerhuis
Research Physician | Sub-Investigator
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Zo dankbaar dat er ook nog artsen zijn zoals Merel Hellemons! ♡
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