Xandra Westerhuis on LinkedIn: A Multidisciplinary Approach: Management and Rehabilitation ... : The… (2024)

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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