Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Here's an annoying review/CBT cheerleading exercise

Discussion in 'General ME/CFS News' started by richio76, Dec 16, 2015.

  1. richio76

    richio76

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    We demand high grade evidence for other hypotheses but are happy to recommend CBT for the most severely ill patients and declare it safe despite there being no appropriate research on that patient group whatsoever. Have they ever actually seen someone who is unable to tolerate sound and light, and can't have anyone in their room, let alone tolerate sessions of CBT (which would cause them exquisite pain and cause immediate deterioration)?

    http://tidsskriftet.no/article/3434755/en_GB
     
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  2. soti

    soti

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    Wow, that one really veers off at the end.

    Great! Still waiting to hear, though, what kind of evidence would disprove it?
     
  3. Effi

    Effi Senior Member

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    I think this quote needs no further clarification. We all know what's up.
     
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  4. TiredSam

    TiredSam The wise nematode hibernates

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    Just replace the word "others'" with "patients'" and that describes how the BPS psychoquackers talk about ME/CFS nicely.
     
  5. soti

    soti

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    Yeah. What I'm realizing in my perhaps quixotic quest to figure out what makes BPSers tick (yeah, I know many people feel this is a waste of time, but this is just the way I am, I can't help trying :) ...what I'm realizing is that the whole discourse is by its very structure a non-starter. This is because each side considers the other side to be not just wrong, but delusional, disrespectful and out to cause damage for personal profit. The feelings are mutual.

    Regardless of how this state of affairs came about and which side is right (and you know which side I'm on :), it's not a promising recipe for a substantive conversation, or really anything deserving to be called a conversation at all. It certainly scuttles any chance of a reasoned discussion about trying to actually find the facts of the matter. So the greater scientific community is perhaps our only hope.

    That, and getting enough money to decent research.
     
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  6. Esther12

    Esther12 Senior Member

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    LOL.

    So much LOL. Sorry maties, but you're about to be triumphed over, and we're not playing by your established rules.



    Thread discussing the untranslated version of this here: http://forums.phoenixrising.me/index.php?threads/norwegian-wyller-kronisk-utmattelsessyndrom-me-–-sykdomsmekanismer-diagnostik.41566/
     
  7. Sean

    Sean Senior Member

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    Reference 40 is the original PACE paper (2011), which is now completely redundant and irrelevant after the null result in its 2.5 year follow-up paper.

    What a farce.
     
    Last edited: Dec 17, 2015
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  8. worldbackwards

    worldbackwards A unique snowflake

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    The evidence has isn't weaker, the evidence base is FINE, which is to say it's of no value whatsoever.
    I've had GET pushed on me when I was severely ill. The risk isn't minimal at all. If I hadn't set my stall out against certain things early on she'd have finished me off completely and quite cheerfully washed her hands of the consequences. Or just ignored them completely, like she did every time I got worse ("Oh, that shouldn't have happened" - so that's alright then).
    Given that we've now determined that truth doesn't spring from research or patient experience (God forbid), one wonders where it does come from. Because it looks much like it's source here is power, that they have and we don't. In which case, we'd better keep going until we hear the lamentation of the women!
     
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