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ME/CFS Alert Episode 102: David Tuller Interview

Discussion in 'General ME/CFS News' started by Andy, Nov 16, 2018.

  1. Andy

    Andy Committee Member & Outreach

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    Llewellyn King interviews David Tuller
     
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  2. Sean

    Sean Senior Member (Voting Rights)

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    Link?
     
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  3. Andy

    Andy Committee Member & Outreach

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    In my post?
     
  4. Barry

    Barry Senior Member (Voting Rights)

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    Piccy clicky.
     
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  5. Sean

    Sean Senior Member (Voting Rights)

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    Ah, for some reason in my usual browser the picture is there but not the link, but is there in my alternate browser. Go figure.
     
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  6. Nellie

    Nellie Senior Member (Voting Rights)

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    @Sean try:
     
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  7. Nellie

    Nellie Senior Member (Voting Rights)

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    @Sean I accidentally deleted my previous unhelpful reply, it was wrong anyway.

    No promises but try clicking on the the utube symbol, bottom right of the video screen, I hover over each symbol until I find it.

    That should change the www address to utube. Highlight the utube address and it should change to link that you want. (must be a better way of explaining this)
     
  8. Sean

    Sean Senior Member (Voting Rights)

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    No, same as before. I can watch it in another browser, so no actual problem.

    But it is weird, never had this problem before with Youtube links here.
     
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  9. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

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    Watched it. The view count Llewellyn King gets is pitiful, almost negligible by YouTube standards. Makes me think there are far less proper ME sufferers than I thought. What could they do to reach a wider audience?
     
  10. Andy

    Andy Committee Member & Outreach

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    Not sure how you can link lack of views of a video with a lack of "proper ME sufferers". What criteria do we need to achieve to be counted as proper ME sufferers?

    Principally, improve their promotion of the interviews e.g. they have a Facebook page, https://www.facebook.com/mecfsalert/, and their last post on it is 25th September. I appreciate their efforts but nowadays it's not about who has the highest quality output but who promotes their output the most successfully.
     
  11. Mithriel

    Mithriel Senior Member (Voting Rights)

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    I find it very hard to watch videos and I think many other people with ME have this problem as well.
     
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  12. Trish

    Trish Moderator Staff Member

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    And most people with ME simply won't be aware such videos exist. I wasn't until I joined a forum.
     
  13. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    I would bet my last dollar that figures of M.E sufferers are greatly exaggerated. Add chronic fatigue to the bag though and that all changes.
     
  14. Stuart

    Stuart Established Member (Voting Rights)

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    I can't watch videos, has anyone done a transcript?
     
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  15. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    You are so right, @Trish! Many with ME, are too sick to know much if anything about the bigger picture surrounding ME, including the fact there are many informative videos available. And, in many cases, problems with memory and comprehension may mean that what
    we've read doesn't stick.

    There may also be the noise factor with videos. I frequently find I need to adjust the sound up and down on videos, the TV etc.
     
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  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    You can access one on Youtube (it took me a few minutes to figure out how), but it is not very accurate, to put it mildly.

    Would people like a transcript?
     
  17. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Yes, please! Only, if you have the time and energy though @Sly Saint.
     
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  18. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    At the milder end of the scale many don't take it seriously enough, or take on board BPS advice to steer clear of other patients, so they don't educate themselves. Or they are still too busy struggling to work and have nothing left in the tank for themselves so can't investigate further.

    Sadly, I know some very mildly affected who will whinge as loudly as anyone else about how hard it makes life, but can't be arsed.
     
  19. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Good point, @Invisible Woman, another stigmatization of ME. Most dismiss it, so pwME with mild cases may dismiss it too, or are too busy struggling to stay afloat to find out about ME. The medical guidance they get may be, or is frequently incorrect.

    Also, at the milder end of the scale, pwME may not have received a diagnosis, or
    doctors may tell them they will get better, which at this point in scientific development is probably faulty
    management. Their mild form may worsen, and then they're hooped.
     
  20. Stuart

    Stuart Established Member (Voting Rights)

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    Besides issues at times with actually watching videos due to vision or cognitive problems, I can't stream content with ISP and bandwidth limitations. It's a transcript or nothing.
     
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