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  1. Valentijn

    A molecular neurobiological approach to understanding the aetiology of CFS/ME/SEID and treatment implications. Paper by Monro & Puri

    Breakspear is a bit more focused on appealing to patients than most quack therapy establishments, but they still don't seem to know what the hell they're talking about when it comes to ME/CFS. A year or two ago they were recommending GET for all chronic fatigue patients in their newsletter, and...
  2. Valentijn

    OMF claim that Naviaux has replicated 77% of the metabolic pathway abnormalities found in his 2016 publication via Facebook

    A preliminary study would usually be fairly inconclusive, due to smaller number of patients and looking at a larger range of metabolites. Generally, such a study would be unlikely to have statistically significant results if correcting for making multiple comparisons. A replication study would...
  3. Valentijn

    Call to Action: Westminster Hall (UK) (parliamentary) debate: PACE trial and its effect on people with ME - Carol Monaghan February 20

    I've emailed her my story from the Netherlands - a neurologist insisting drugs could not help me, only exercise, then printing out the PACE recovery paper when I asked why he believed that. I also thanked her for her efforts, regardless of the outcome.
  4. Valentijn

    Efficacy of web-based cognitive–behavioural therapy for chronic fatigue syndrome: randomised controlled trial (2018) Knoop

    The Dutch BPS group engage in some interesting shenanigans at times, like declaring completely untreated patients cured by CBT. They might be downplaying actometer results to avoid further scrutiny.
  5. Valentijn

    Childhood sleep and adolescent CFS/ME: evidence of associations in a UK birth cohort (2018) Crawley et al.

    Title: "Childhood sleep and adolescent chronic fatigue syndrome (CFS/ME): evidence of associations in a UK birth cohort" How the fuck do they get to study Not-CFS and declare it a proxy for ME/CFS? Seriously, who lets people get away with casually declaring something which doesn't meet even the...
  6. Valentijn

    New German guideline for ME published today

    Do they cite to any sources? This sounds like the usual Simon Wessely or Peter White opinions that they shove into their papers without any supporting evidence.
  7. Valentijn

    PhD Thesis: Comprehensive molecular analysis of different classes of molecules in a ME/CFS pilot study group

    It looks like the full text isn't published anywhere, and the university won't publish it. Hopefully the author will put it online somewhere.
  8. Valentijn

    PhD Thesis: Comprehensive molecular analysis of different classes of molecules in a ME/CFS pilot study group

    "Abstract: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a prevalent but poorly understood illness characterised by severe debilitating fatigue, affecting approximately 1 % of the global population and disproportionately females. There are no agreed diagnostic markers or...
  9. Valentijn

    Trial By Error: Letter to British Journal of Sports Medicine from CPET Experts

    Bleach also kills things - so the speculation is that maybe there's a dose where it kills theoretical pathogens but doesn't harm the child who is ingesting it. But please bear in mind that this is an analogy, and being a completely identical situation isn't really the point :-P It = exercise in...
  10. Valentijn

    Trial By Error: Letter to British Journal of Sports Medicine from CPET Experts

    Basically there is a lot of evidence that exercise harms ME patients - large surveys, anecdotal evidence, and some circumstantial evidence regarding blood abnormalities after exertion. There is also a lot of evidence that every form of GET used in trials has failed so far - symptom responsive...
  11. Valentijn

    Trial By Error: Letter to British Journal of Sports Medicine from CPET Experts

    It's pretty speculative though, as to whether or not deconditioning is avoidable when generally operating at an energy deficit. I think we have a tendency to try to avoid absolutes, even when the evidence indicates the absolute is correct, and we end up with grossly unlikely speculation -...
  12. Valentijn

    Trial By Error: Letter to British Journal of Sports Medicine from CPET Experts

    I think this is the most relevant point when it comes to exercise: it's never worthwhile if it comes at the cost of other activities. Maybe some people with the underlying pathology of ME/CFS are mild enough that they have energy to spare for extra activities (beyond what they would normally do...
  13. Valentijn

    2 day CPET testing for anaerobic threshold in ME/CFS. Share videos, papers, your experience, discuss.

    I think a 2-day CPET is only necessary to show pathology in mild cases. Moderate-severe will have abysmmal scores even on a single test, which proves disability by itself. Deconditioning only results in mildly lowered scores, so disease can't be confused with deconditioning if performance is...
  14. Valentijn

    Efficacy of web-based cognitive–behavioural therapy for chronic fatigue syndrome: randomised controlled trial (2018) Knoop

    The Dutch fatigue clinic I went to rated me as "passive" based on my actometer data, but I was also crashing a lot like a boom-and-bust "relatively active" patient. So the psychologist and relaxation therapist (who used stealth-GET) were telling me I needed to do more, while the occupational...
  15. Valentijn

    Diabetes meds. What can you tolerate?

    Victoza works pretty well for me. I had about a week of constipation when starting it, but magnesium got things started up again :-P I don't think I had side effects from gliclazide, it just left me too high at night and too low in the middle of the day.
  16. Valentijn

    Psychological Stress and Mitochondria: A Systematic Review Picard, Martin PhD; McEwen, Bruce S. PhD

    They literally are proposing that psychological stress may mutate the mitochondrial DNA: No humans involved in these studies, which also makes their relevance far less likely: Changes in DNA were not outcomes in any studies: Most of the stressors included a substantial physical factor...
  17. Valentijn

    Nature: A reboot for chronic fatigue syndrome research

    It applies to every trial which used objective measurements, aside from a couple early Oxford ones where they were a lot more blatant about using physically healthy patients. My favorite is Wiborg (2010), which was a review of three Dutch trials involving actometers. No improvement in actual...
  18. Valentijn

    Blog: Spoonseeker, "An Offer You Can’t Refuse"

    Thought of another one - disenfranchise.
  19. Valentijn

    Nature: A reboot for chronic fatigue syndrome research

    That's a very good question :p I think the answer is "probably not". The Cochrane document about changes to the review groups says: That seems to suggest that agreement from the competing group is required, which is never going to happen with the quacks running ME/CFS reviews. It's probably...
  20. Valentijn

    Nature: A reboot for chronic fatigue syndrome research

    Cochrane allows random people to set up groups which review categories of conditions. Cochrane's Mental Health group which reviews ME/CFS was set up by Simon Wessely, and it sounds like it has typically included psychosomatic CFS researchers. So the problem is that Cochrane seems to have no...
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