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  1. ME/CFS Science Blog

    The SMILES trial: do undisclosed recruitment practices explain the remarkably large effect? (2018) Molendijk et al.

    There recently was an IMAGINE trial in the Lancet Gastrology claiming that hypnotherapy decreases symptoms in irritable bowel syndrome (don't think it was discussed here). Unblinded with subjective outcomes of course. It also reminded me of the PACE-trial. See for example this quote:
  2. ME/CFS Science Blog

    Open (Palmerston North, New Zealand) Effects of exercise at anaerobic threshold on post exertional malaise in individuals with ME/CFS

    That's possible. I remember the authors of 2 day CPET studies speculating about this. See for example Vermeulen et al. 2014. I was thinking more about the O2 correctly reaching the cell but some metabolic abnormality blocking it's normal use in aerobic energy production. Again, this is all...
  3. ME/CFS Science Blog

    Open (Palmerston North, New Zealand) Effects of exercise at anaerobic threshold on post exertional malaise in individuals with ME/CFS

    I think there are different ways to define the anaerobic threshold like measuring lactate levels and see if they rise above normal levels (like Mark Vink did in his study) or by looking at differences in respiration, like most CPET-studies do (using the ventilatory threshold). I was sort of...
  4. ME/CFS Science Blog

    Who said: Labeling patients with ME or CFS keeps them sick

    I want to use this thread to collect studies suggesting that labeling patients with ME or CFS, makes them sicker (because it makes them think they have a real disease instead of psychosocial problems thay can overcome). Thus far, I've found two: Hamilton et al. 2005. The prognosis of...
  5. ME/CFS Science Blog

    Who was it that said being in support groups leads to poor outcome?

    Don't know if this is mentioned yet, but I was just reading some of the GET trials and one of them (Powell et al. 2001) did a mediation analysis where they found that membership of a self-help group predicted poor outcomes. The paper (Bentall et al. 2002. Predictors of response to treatment for...
  6. ME/CFS Science Blog

    David Tuller: Trial By Error: “Talk is Cheap,” Patients Tell NIH

    I think this refers to Leonard Jason's study at the DePaul university, Chicago. See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5510613/
  7. ME/CFS Science Blog

    David Tuller: Trial By Error: “Talk is Cheap,” Patients Tell NIH

    I appreciate those trying to make sense of the NIH’s position. But I don’t see how one is supposed to break the cycle of inertia without throwing some money at this disease and facing the risk of funding some bad studies in transition. I don’t really see what alternative there is. Wait and see...
  8. ME/CFS Science Blog

    David Tuller: Trial By Error: “Talk is Cheap,” Patients Tell NIH

    Do not know the details but didn’t the great success stories in medicine like polio or AIDS turn into a success because of political action and campaigning instead of waiting for good research proposals to arise? To me it seems like NIH is mostly willing to fund what researchers find...
  9. ME/CFS Science Blog

    David Tuller: Trial By Error: “Talk is Cheap,” Patients Tell NIH

    Not sure about that. Maybe success should not solely be defined as a good study or paper but as getting the research field going and attracting new researchers. It seems like we're in a vicious cycle of inertia: there aren't any good researchers because there is no secure funding, and there is...
  10. ME/CFS Science Blog

    Australia’s NHMRC ME/CFS Advisory Committee draft report released for public consultation

    Very few words on CBT. It seems like the Australian BPS'ers prefer GET?
  11. ME/CFS Science Blog

    News from Belgium

    True, but I think the minister was just making an announcement. We haven't seen the new convention or the assessment report from Leuven. So everything is still in an early phase I guess. So it's not that strange that the website of UZ Leuven has't been updated yet (I hope it will be asap). I...
  12. ME/CFS Science Blog

    Open (Palmerston North, New Zealand) Effects of exercise at anaerobic threshold on post exertional malaise in individuals with ME/CFS

    I used to think that the 2 day CPET results and deficiencies in aerobic capacity made sense because exercising with ME often feels like your muscles instantaneously fill up with lactic acid (not only I but also Anil Van Der Zee and Marc Vink have described it like that). But now I'm not so sure...
  13. ME/CFS Science Blog

    Open (Palmerston North, New Zealand) Effects of exercise at anaerobic threshold on post exertional malaise in individuals with ME/CFS

    Personal note: for me the experience that characterized ME/CFS during exercise (I had a gradual onset and so for a while had mild ME) is extreme muscle soreness (like I had just run half a marathon) after mild physical activity. The weird thing is that I wasn't out of breath. In fact sometimes...
  14. ME/CFS Science Blog

    Open (Palmerston North, New Zealand) Effects of exercise at anaerobic threshold on post exertional malaise in individuals with ME/CFS

    Do not think this is mentioned allready but hodges et al. allready did a study of the 2 day CPET procedure in which they compared MECFS patients to MS patients. The current study seems to investigate pacing by using heart rate at aerobic threshold as a limit. So it seems like they are...
  15. ME/CFS Science Blog

    Open (Palmerston North, New Zealand) Effects of exercise at anaerobic threshold on post exertional malaise in individuals with ME/CFS

    It differs between studies. The large study by the workwell foundation actually found the greatest difference for workload at aerobic treshold. See the table on MEpedia https://me-pedia.org/wiki/Two-day_cardiopulmonary_exercise_test
  16. ME/CFS Science Blog

    Open (Palmerston North, New Zealand) Effects of exercise at anaerobic threshold on post exertional malaise in individuals with ME/CFS

    This is interesting. Does that mean that in your view PEM cannot be explained by deficiencies in aerobic capacity? And might this suggests that the drop on a second day CPET could be unrelated to most of the PEM ME/CFS patients experience in their day to day life? As far as I know, no study has...
  17. ME/CFS Science Blog

    News from Belgium

    Good point. Either these patients ran away after getting their CFS diagnosis (and the BPS explanation that goes with it) but before being offered treatment. Or the CFS centre only offered GET/CBT to a selected group of CFS patients - the group where they think the treament would be most beneficial.
  18. ME/CFS Science Blog

    News from Belgium

    It's the bad type. The previous guideline explicitly said that CBT provided to ME/CFS patients should be following the model of Bleijenberg and Chalder. The government would only reimburse this model because it's 'evidence based'. Do not have information about the new guideline yet.
  19. ME/CFS Science Blog

    News from Belgium

    Not sure either, but after the previous report, they concluded that exercise capacity measures are not "relevant" for evaluating treatment effects because these did not show improvement... So 50 patients dropped out and 40 did not want the treatment. That's 90 patients in total, a large amount...
  20. ME/CFS Science Blog

    News from Belgium

    I think that information will be in the assessment report from the University of Leuven that I can’t seem to get my hands on. The minister (it’s a she by the way) claims the report is available online on the government website. But I and the people from ME-gids can’t find it. The patient...
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