Video: ME/CFS Alert, Episode 119: Interview with Tom Kindlon

Code:

https://www.youtube.com/watch?v=2hrPnK1OWXQ

https://www.youtube.com/watch?v=2hrPnK1OWXQ

 

I thought I'd add a link to Tom's announcement on twitter which provides more context for the interview.

Code:

https://twitter.com/TomKindlon/status/1313115336028360704

https://twitter.com/user/status/1313115336028360704

 

Tom who?

 

He's a quiet guy, you probably have never heard of him, he never promotes himself/his social media channels at all

 

It was good to put a voice to your writings -- thanks for sharing....and the work you do @Tom Kindlon

 

Around 6:00, Llewellyn King says, "Trinity is the great University of Ireland..." and the computer-generated subtitles say "Trinity is the great University of Iowa..."


[To be fair, the audio is a bit garbled at that point.]

 

LOL! And this is why auto-generated subtitles are often called CRAP-tions instead of captions.

When it's a minor error it's no big deal but some of the errors are pretty bad.

I can hear pretty well. I can usually figure out what's being said (although sometimes accents throw me off). But I often read transcripts instead because it takes more energy for me to watch a video than to read the transcript.

However, people who are deaf or hard of hearing need captions or transcripts that have been edited/corrected by a human being.

 

I've always wondered who is Llewellyn King and who did he become involved in me/cfs?

edit: corrected my mispelling of his first name

 

So far as I know, King became interested in ME because his friend and colleague, retired Wall Street analyst Deborah Waroff, has been afflicted by it since 1989. Together they created a YouTube series called "ME/CFS ALERT" which is devoted to investigating the disease from many different angles.

 

Nice interview and thanks for all hard work. I can relate very much to the development of disease, from hanging on for a long time, to the completely other spectrum today.

Anecdotally Dublin will always be a special place, cause that was in the early confusing days of ME. Just about 15 years ago we were some friends going over to Dublin to visit a friend, planned long time ago. I do remember that I flew over one day before the rest of the guys, so that I could rest in advance and maybe take part in some activities. Spent much of the time in the hotel. But I did manage to see the fabulous Trinity and the Guinness museum. Even a little hurling!

So much for fear/avoidance, bad motivation and all such nonsense and speculation as part of ME? Guess everyone with same trajectory of disease wish they actually were a whole lot more fearful and did the right things back in the days. Unfortunately that was not possible with little knowledge and no sound advice.

 

Thanks for all the feedback. It’s difficult putting yourself out there. I’m sure many have restrained themselves given the critical comments many incl. I often make in the ME world!

There have been quite a few comments generally about my accent: you have it all wrong, you all have accents, I’m the only person in the world who doesn’t have an accent

 

Makes total sense. He has a wonderful voice for pbs, I may watch some of his videos on his website.

@Tom Kindlon It was a lovely piece, and it does take courage to put yourself out there. I think you handled everything with class and clarity.

 

https://twitter.com/user/status/1314668808397824007

 

Lovely interview Tom. I liked the informal conversational tone, letting your personality shine through. I hope there's a part 2.

 

Thanks, that's nice to hear.

The possibility was never brought up by Llewellyn or any of his team, so there doesn't seem to be any plans at present.

 

I've been receiving their email updates ever since I was diagnosed in 1999 – for years it was one of very few sources of news about research and developments in ME.