Marky90
Science breeds knowledge, opinion breeds ignorance
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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" The results of this study may expand treatment options for patients with CFS, for whom graded exercise therapy and cognitive behavioral therapy are the only evidence-based interventions that exist at this moment."
Really? What about Rituximab?
Yeah... I hope they just haven`t heard of it. This kinda proves what i already fear: that most people don`t actually read the studies that are supposed to prove that CBT and graded exercise therapy works.. They seem to often take the conclusion for fact.
" The results of this study may expand treatment options for patients with CFS, for whom graded exercise therapy and cognitive behavioral therapy are the only evidence-based interventions that exist at this moment."
Really? What about Rituximab?
The information regarding the possible role of cytokines in the pathophysiology could come from intervention studies in which the activities of relevant cytokines are reduced, for example, reducing interleukin-1, interleukin-6 or tumor necrosis factor.
Knoop's name is on a few dodgy papers, as is Van der Meer's. The others don't seem to have much history, and I don't know anything about them.This lot is in bed with the weasel.
Useless bullshit. It's a cytokine treatment trial, but cytokines are only a secondary measure, and all of the focus is on fatigue. Get rid of the psychobabbler and use your brains.The primary outcome measure will be fatigue severity at 4 weeks, measured with the validated Checklist of Individual Strength (CIS).
I think the idea of trialing various cytokine inhibitory drugs is potentially a good idea. They are talking about starting with a trial of anakinra which is used in RA to inhibit IL-1. @Jonathan Edwards - is this a worthwhile endeavour in your opinion?
Yeah... I hope they just haven`t heard of it. This kinda proves what i already fear: that most people don`t actually read the studies that are supposed to prove that CBT and graded exercise therapy works.. They seem to often take the conclusion for fact.
Knoop's name is on a few dodgy papers, as is Van der Meer's. The others don't seem to have much history, and I don't know anything about them.
Why don't they measure these cytokines before and after treatment? This is how real objective science works. Otherwise it is sloppy science. Still i do hope it works but i doubt it.
Roerink et al. said:6. Cytokine concentration in blood. The cytokine concentrations in blood (plasma and blood in Pax-gene tubes) will be determined. Our study can provide additional information regarding cytokine levels because we have the opportunity to compare cytokine concentrations with healthy neighborhood controls. Also we will compare pre-treatment concentrations with post-treatment concentrations.
They're all from Radboud Nijmegen (the Netherlands). They're the ones who throw CBT at everything (MS, post-cancer fatigue, post-polio syndrome, cfs, ...). One patient who was in this trial said that they offered voluntary CBT to everyone in the trial, almost like an incentive I guess in their minds?Knoop's name is on a few dodgy papers, as is Van der Meer's. The others don't seem to have much history, and I don't know anything about them.
My CRP was raised the one time it was testedI think this has to be worth trying, although the absence of raised CRP in ME suggests that symptoms are probably not generated by a typical IL-1 and TNF cytokine drive.