Discussion in 'General ME/CFS News' started by Andy, Nov 16, 2018.
Llewellyn King interviews David Tuller
In my post?
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.
@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)
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.
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?
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.
I find it very hard to watch videos and I think many other people with ME have this problem as well.
And most people with ME simply won't be aware such videos exist. I wasn't until I joined a forum.
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.
I can't watch videos, has anyone done a transcript?
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.
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?
Yes, please! Only, if you have the time and energy though @Sly Saint.
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.
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.
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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