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    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    It's not the "wrong" criteria though. It's the criteria from the time of the study. Being hawkish is good. But there also seems to be a significant antipathy to anything to do with psychology, and I got that distinct impression from reading the factsheets.
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    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    It is what it is. It's a piece of evidence. Certain things are sufficient to junk a study (like lying about primary outcome). Other limitations and biases are good to keep in mind, and look at other studies.
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    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    Actually, it looks like I posted the write article. The one I posted wasn't even a treatment trial, it just assessed stress management skills. Here is the study I was thinking of: https://www.sciencedirect.com/science/article/abs/pii/S0022399910004472 and another study found greater stress...
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    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    I think you should check that study. From what I remember it did actually find much higher levels of anxiety depression and stress in the ME group prior to infection (3x IIRC). They did a large number of comparisons, and it was non significant after correction. It would be interesting to see a...
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    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    Yes, I am familiar, and I'm not saying it is easy. No, that doesn't seem to be the case from what I can see. There are many who definitely do fit the criteria and are severe. Ok thank you. Yes, I agree with this. It does make it difficult if we're not able to give specific examples, but I...
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    Symptom perceptions, illness beliefs and coping in chronic fatigue syndrome, 2009, Moss-Morris

    I think you're missing the point that patients don't know what is happening in their bodies. Stress and infections, for example, can cause very similar physical symptoms. In the case of an infection the symptoms are mostly produced by the body itself.
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    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    No, it's not merely opinion, as we have many studies showing that stress is a preciptating factor, that rehabilitation and stress management helps, as well as patient experiences. You may not agree that the evidence is good enough, but that's what we have, and there are things patients can do...
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    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    Yes, but the point is that some things can potentially help that shift, and that is what these brain retraining programmes aim to do. I'm not saying that they are able to cure everyone, or that they aren't a bit hit and miss in terms of evidence. It's probably worth looking at the actual...
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    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    No, it's not that simple. Of course exercise alone isn't a cure. We know that. The key point is doing activity and exercise when your body is able to, and also removing factors that could be exacerbating symptoms (such as stress). And yes, it's definitely falsifiable by having a good...
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    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    Did you miss the studies I posted in response to Utsikt?
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    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    That's good, but not all patients manage to do that, and it's also difficult to tell the difference between PEM and other causes of symptoms. And I think "pushing" is part of the problem. If you look at brain retraining, it's never about pushing. It's generally the exact opposite: reducing...
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    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    Not exercise specifically, but activity in general. And I think there are a couple of different points to be made. First, yes, they won't be aware of natural recovery. But second, there may be factors relating to activity that help recovery. Staying in bed, for example, causes OI, pain...
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    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    It's more about fear of PEM. Many patients avoid activity (and therefore PEM). To be diagnosed with ME/CFS you have to have PEM, so if you never experiment, how do you know if you still have PEM when doing a specific activity?
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    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    The argument is based on simple logic. If a patient avoids all exercise, they have no way of knowing if they are able to do it.
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    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    Yes, people with PEM avoid exercise. However PEM varies over time and is not fixed. A certain amount of avoidance is sensible, but too much is detrimental.
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    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    When I say undeniable, what I mean is patients saying that they deliberately avoided exercise, or deliberately avoided getting out of bed, because their doctor told them it would be dangerous, or their mitochondria were broken, etc. I would call that definitive evidence, especially when it is...
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    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    No, and I didn't say that. The research is primarily for pain, and in that case yes there is good evidence that fear, stress, and expectation upregulate pain. In terms of ME/CFS, here is a study showing that expectation affects treatment outcome...
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    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    Well, as pointed out in my comment above, there is evidence that these things can perpetuate the illness. Sure, we can discuss the quality of the evidence, and it would be great to have more, but this is what we have right now. And you can indeed read the experiences of patients (both recovered...
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    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    Let me be crystal clear: I am definitely not saying that all patients have a fear of activity. Of course they don't, and that would be a ridiculous thing to say. It's clearly not true, and your experience (and many others) are great examples of that. However it's also undeniable that many...
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    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    Here are some relevant studies: https://www.sciencedirect.com/science/article/abs/pii/S002239999800021X https://www.tandfonline.com/doi/abs/10.1080/09638230500136548
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