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    John Oliver (HBO) about media and science

    I wish he would do an episode on us in the week leading up to next year's millions missing. Sorry for slightly hijacking the thread, but his episode on rehab could almost serve as a template for this, e.g. the bit at 2:55 is basically the exact same thing for the centres offering 'treatments'...
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    Anti-convulsants - Pregabalin and Gabapentin

    So ENGs generally cannot be the cause of your experience because there is no reported case similar to your experience, therefore we will not report your experience and dismiss it entirely. Cool strategy...
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    Re-framing GET as pacing, or vice-versa

    You may be overthinking this. I would assume this is mostly just a misunderstanding on part of some people pushing GET because they somehow assume that while you do more and more, it also inherently encompasses never doing too much - never mind that how much is feasible is never figured out...
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    Misrepresentation and distortion of research in biomedical literature, Boutron and Ravaud, 2018

    It would be interesting to see if the part about "requesting the addition of spin" is more common with psychology-associated research. I vaguely remember something about reviewers not wanting to add comments about how subjective outcome measures in unblinded trials are problematic...
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    New German guideline for ME published today

    Thanks @YaS, I completely agree with all your points. Quick amendments to what I wrote in light of this: I missed the voltage part. Sorry. I think 'Spannung' here should indeed be translated 'tone' or maybe 'tension'. This is a reasonably complicated topic as far as I remember and I am very...
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    Nature: A reboot for chronic fatigue syndrome research

    A german translation of this article was just posted on Spektrum.de!
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    New German guideline for ME published today

    Maybe it is worth to pick this letter apart for everyone to follow so our international friends do not feel left out. I think it depends a lot on how lenient one wants to be and if it would be appropriate to grant Prof. Stark's letter doctor-to-patient-communication status. It possibly is quite...
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    New German guideline for ME published today

    So this Prof. Stark claims that he uses passive mobilization and stretching exercises on bed-bound patients, leading to long-term improvements in autonomic dysfunction. If this is true, I would actually like to see him publish on his work in a more formal manner (unless he has already done so?)...
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    New German guideline for ME published today

    Where have you heard this? That would be... interesting. What also strikes me as interesting is that they apparently think they can declare sharing documents that were made publicly available 'illegal'. I sincerely doubt there is any legal basis whatsoever for this, but they may have a case...
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    New German guideline for ME published today

    What a splendid use of money, time, and energy amongst a very sick patient community. @Sly Saint I guess that would depend on what one would want to achieve. They are obviously not very effective and probably not even really on our side, much like AfME has been. They have repeatedly shown that...
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    David Tuller - Trial By Error: The Dutch Review; My Trip; Bristol's Silence

    It is really hard to argue against what we do when it is literally called driving on the "right" side of the road, though, isn't it?
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    New German guideline for ME published today

    @Cheesus saved us by imparting his wisdom on me for exactly this moment. Thank you, Cheesus!
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    New German guideline for ME published today

    Well, I guess the question yet again is more 'to whom do you want to reply in which manner' than whether or not it is warranted. Since the original document for the Methodenreport has since been removed and reuploaded without that weird private letter, I thought I'd just leave this here for...
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    New German guideline for ME published today

    I am too tired to re-read the entire thread right now and my memory hasn't been all that great for the last couple days so sorry if I bring up something that was already discussed at length, but I want to write this down before it escapes me. On page 93 of the Methodenreport I found this little...
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    Legs weakness

    What is the suggested treatment and expected progression for lumbar radiculopathy? What did your neurologist say about the expected prognosis of this condition? I know nothing about radiculopathies but if there is a treatment and you would respond to it you may be able to rule out ME if your...
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    Trial By Error: Letter to British Journal of Sports Medicine from CPET Experts

    I want to highlight this because I feel that this almost cannot be stressed enough. I encountered the exact same thing during my time with the weights and, frankly, have fuck all to show for all my efforts. Maybe there is some way to work around this (I remember a recent thread about 20mg...
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    Trial By Error: Letter to British Journal of Sports Medicine from CPET Experts

    I have. A Decade ago when I was not as sick as I am now up until I hit a wall around ~2012 when I just could not recover anymore. The gist of it would be: Do only one set of any particular exercise and stop when it gets harder for weights, almost skip the 'active recovery' part of the HIIT (just...
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    Nature publishes response from Sharpe et al

    Is this really all they have to declare in this context? This is a genuine question btw, not a rhetorical one. Can we fault them for not mentioning e.g. that M.S. has (according to Coyne) been paid bounties to get people off benefits as an assessor or is this sort of stuff not relevant in this...
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    New German guideline for ME published today

    How do you even begin to argue with something like that? I am genuinely asking. As far as I know 'somatization' is one of those annoying words that mean something slightly different to every single person using it and is adaptable in the sense that it always takes on the meaning of what whoever...
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    New German guideline for ME published today

    I don't think this document is something you have to tackle privately, Inara ;) Again, we need to sort out what we even theoretically could be suing for before we try to gather funds. Since the German association was more or less brushed off as a self-help group, does anyone think it could be...
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