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Blog: The real reason I’ve stopped writing for The Canary? Watch this video. by Steve Topple

Discussion in 'General ME/CFS news' started by Andy, Mar 7, 2019.

  1. Andy

    Andy Committee Member

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    Location:
    Hampshire, UK
    https://mrtopple.com/2019/03/07/the-real-reason-ive-stopped-writing-for-the-canary-watch-this-video/
     
    Sean, Diwi9, Lisa108 and 2 others like this.
  2. rvallee

    rvallee Senior Member (Voting Rights)

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    Canada
    I grok that face and I hate it so much, to know so many others are suffering so obviously. I guess you need to really experience it to believe it. That's a problem.

    What pisses me off is that every damn physician who falls to it says the same thing and somehow that galactic-sized red flag is just brushed aside. That's the most giant, absurdly impossible coincidence in the damn universe, that so many people would conveniently have the same damn belief of an experience that is apparently all illusion.

    Empathy is the underappreciated tool in the medical toolbox. Not everyone has it but those who do should be able to understand that this is a real experience. This is the kind of experience nobody who doesn't understand it can fake. It's criminal that it continues to happen despite this much awareness.
     
    shak8, Diwi9 and wigglethemouse like this.
  3. Sean

    Sean Senior Member (Voting Rights)

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    Can't remember who said it (Oliver Sacks?), but it goes something like:

    The most important question in medicine is how to respond to those patients you can't offer any effective treatment.

    An interesting thought for our times.
     
    Binkie4, Lisa108, rvallee and 5 others like this.
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I have only looked at this blog and video briefly. The woman in the video looks to be having a grand mal epileptic fit. I am not sure how that ties in to the story in the blog, although apparently she has been diagnosed as having epilepsy.

    I am not clear what message the video is intended to convey. Epilepsy is very unpleasant and fairly common. Impact on life is usually pretty complicated. I would like to try to understand more about how it is thought to relate to other things in this case.
     
    MSEsperanza, Wonko and Trish like this.
  5. lansbergen

    lansbergen Senior Member (Voting Rights)

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    Did You have a close look at what happened before the fit started?
     
    roller* likes this.
  6. roller*

    roller* Senior Member (Voting Rights)

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    she was breathing (out) with "round" lips.
    and there was like sweat in her face.

    looked familiar to me, this first part.
    cold sweat and acidosis?

    so, what happened @lansbergen ?
    :)


    if these ppl are users here, i would like to know if she heard him speaking, all the time.
     
  7. lansbergen

    lansbergen Senior Member (Voting Rights)

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    616
    Seems like sweating to me. Cold or hot I can not tell.

    Furthermore I have the impression she was swallowing something.
     
    roller* likes this.
  8. Londinium

    Londinium Senior Member (Voting Rights)

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    If she's been diagnosed with epilepsy (per JE's comment above) then the first bit pre-seizure could be an initial partial seizure (an 'aura').

    My OH has temporal lobe epilepsy and virtually all the time she only gets the partial seizure / aura which doesn't develop into a full tonic-clonic; indeed, she's only ever had about 3-4 full tonic-clonic seizure in her life. In her case, the partial seizure presents as altered emotional state, 'freezing', some speech impediment and almost entirely favouring her left hand over her right (she's right-handed normally). Partial seizures can present very very differently depending on where in the brain they start.

    Fun fact: my OH has also suffered at the hands of the BPS brigade - prior to having her first witnessed tonic-clonic seizure, her partial seizures were misdiagnosed (despite a strong family history of epilepsy) and she was sent for CBT for 'panic attacks'. Three years of ineffective counselling and believing her almost monthly 'attacks' were because she just couldn't control her anxiety. Funnily enough, being told to think your epilepsy better is not an effective treatment. Once she'd had a 'proper' epileptic seizure she was given an EEG, put on the correct anti-epilepsy meds and her 'panic attacks' magically disappeared.
     
    lafarfelue, Lisa108, Amw66 and 9 others like this.
  9. rvallee

    rvallee Senior Member (Voting Rights)

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    Something something Peter White saying to the NICE committee that if a treatment does not work after a few weeks then it's probably wrong or the diagnosis is wrong. Can't even follow their own advice, because their treatment is special, I guess. 3 years is absurd waste of time on a misdiagnosis. The whole point of this is supposed to save money and it doesn't even do that.

    I tried therapy once. Ended up mostly talking about stuff of 0 importance to my life or my health problems because I had nothing else. Fortunately it was cheap through a university program but it was a complete waste of everything.
     
    Lisa108 and Sean like this.

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