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Jen Brea: What happens when you have a disease doctors can't diagnose - TED Talk!

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
I've had a fantastic response on Facebook. People who I havent spoken to in years are making really positive comments, and I have had people thanking me for informing them about something they didn't know anything about.
I've had a deafening silence on Facebook. One like from a cousin who I found out a couple of weeks ago has had ME for 10 years.
 

Cheesus

Senior Member
Messages
1,292
Location
UK
I've had a deafening silence on Facebook. One like from a cousin who I found out a couple of weeks ago has had ME for 10 years.

That's sad. Did you post the video with an explanation? I wrote a couple of sentences about how I have been really ill and that I would really appreciate it if people could watch the video to gain a better understanding. I think my emotional blackmail swayed them.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
That's sad. Did you post the video with an explanation? I wrote a couple of sentences about how I have been really ill and that I would really appreciate it if people could watch the video to gain a better understanding. I think my emotional blackmail swayed them.
To be honest I'm a terrible Facebook user, I hardly use my account and never post anything, like anything or interact with anyone, I only check it a couple of times a week. I have 51 friends (family or musicians I know personally), most of them don't know I'm ill and will wonder why I posted the video without comment. So until I start using social media properly I shouldn't be surprised if my coming out party is a bit of a flop and I find myself sitting alone with the DJ wondering what to do with all those sandwiches. I guess nobody knew they were invited :(.
 
To be honest I'm a terrible Facebook user, I hardly use my account and never post anything, like anything or interact with anyone, I only check it a couple of times a week. I have 51 friends (family or musicians I know personally), most of them don't know I'm ill and will wonder why I posted the video without comment. So until I start using social media properly I shouldn't be surprised if my coming out party is a bit of a flop and I find myself sitting alone with the DJ wondering what to do with all those sandwiches. I guess nobody knew they were invited :(.
In case it makes you feel better, I have 233 Facebook "friends" and so far I've had one whole like. But, like you, I just straight shared the video rather than attaching a message as well so that will account for some of the lack of acknowledgement of it. The rest I assume is just apathy or disinterest, or I have been told that people don't know how they should react to anything I post about ME, so it could be that as well.

What I would encourage is, if you (the general you, not specifically TiredSam) are on social media and are friends with people who are patients, go out of your way to acknowledge their posts, even if it's just with a like - we are sharing stuff that is important to us after all.
 

Hajnalka

Senior Member
Messages
910
Location
Germany
Someone on youtube complained about the "long dramatic pauses" and called them a "cheap effect" and this is what Jen answered:

You should have seen the original! It took me 21 minutes to give this talk. I had long moments where I couldn't speak at all and lost all capacity for verbal thought or speech (most of the pauses were cut in the edit). It's called post-exertional malaise. The mental effort it took to memorize this actually severely affected my language centers for several days. Fortunately, I was able to get an IV in the morning or I would never have been able to go on stage.
 

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
Here is a tinyurl of the link to the TED site: http://tinyurl.com/jb63pad

The tinyurl is easier to text or send to others in a non-HTML email. The TED link is so long that it can wrap and break in a text based email. Anyone who uses the tinyurl will be redirected automatically to the TED site.

The video has gained 10,000 views since I first visited the TED site two hours ago (!). Thank you to Jen Brea for doing an excellent job! And thanks to the TED site for providing a transcript. I can't listen to audio due to sound sensitivities so the transcript was nice to read.
 
Messages
73
In case it makes you feel better, I have 233 Facebook "friends" and so far I've had one whole like. But, like you, I just straight shared the video rather than attaching a message as well so that will account for some of the lack of acknowledgement of it. The rest I assume is just apathy or disinterest, or I have been told that people don't know how they should react to anything I post about ME, so it could be that as well.

What I would encourage is, if you (the general you, not specifically TiredSam) are on social media and are friends with people who are patients, go out of your way to acknowledge their posts, even if it's just with a like - we are sharing stuff that is important to us after all.

Interestingly, I "came out" last night on Facebook by posting the video and explaining that I have this disease. Most of my Facebook friends did not know. Not a single comment or Like (besides my wife). I wonder if people don't know how to react? I'm curious if others are also experiencing this...
 

Old Bones

Senior Member
Messages
808
I shouldn't be surprised if my coming out party is a bit of a flop and I find myself sitting alone with the DJ wondering what to do with all those sandwiches. I guess nobody knew they were invited :(.

Interestingly, I "came out" last night on Facebook by posting the video and explaining that I have this disease. Most of my Facebook friends did not know. Not a single comment or Like I'm curious if others are also experiencing this...

I, too, "came out" on Facebook yesterday -- indirectly. Since I'm not a Facebook user, my husband posted the link with a brief note on the Facebook page of a relative who has recently shown interest. She has almost 1,000 "friends" -- many of them members of my extended family. Although she, herself, expressed thanks for the link, so far not a single "Like".
 
Messages
2,158
I, too, "came out" on Facebook yesterday -- indirectly. Since I'm not a Facebook user, my husband posted the link with a brief note on the Facebook page of a relative who has recently shown interest. She has almost 1,000 "friends" -- many of them members of my extended family. Although she, herself, expressed thanks for the link, so far not a single "Like".

It may be that the majority of these 'friends' simply haven't see your post.

I am friends on facebook with a much more modest number of people ( a few dozen I think).

I really don't want my FB newsfeed filling up every day with everything all these people 'like' or 'share', so I have marked most people 'unfollow'.

This means I only get to see what they are posting if I actively go and look. I only actively follow and get all the updates into my newsfeed from the few close friends and family I choose to keep close links with.

I think lots of people do this.

And if they don't and they also have hundreds of 'friends' they are unlikely to do more than glance at what's in their newsfeed and move on unless it really catches their eye. Everything becomes ephemera lost in a stream of dross.
 

ash0787

Senior Member
Messages
308
Ok I've de-trolled the Youtube video comments, at least the ones up to now.

It wasn't too bad, the ones that annoyed me were saying how she was playing a victim,
I was like ... what counts as a victim if someone in a wheelchair doesn't ?
some others were obviously just fools and did a good enough job of making themselves look bad
without me needing to help.

Going to rest now ... sort of almost sweating from sitting upright and typing a lot,
I'll leave the Facebook comments to you guys, those tend to be easier because people
don't talk so much nonsense without the veil of anonymity.
 

perrier

Senior Member
Messages
1,254
Jen is a beautiful young woman,articulate, sensitive, compassionate. Bravo! Fabulous work! Thank you.

I would like to make a little comment, however. I realize all aspects of the illness cannot be covered, and that's not the point. But when Jen says she is getting better every day, a little better, it gives the impression that the illness moves on an upward trajectory. Alas, the illness is plagued by violent relapses.

Thus, it is imperative for science to work as quickly as possible to help the sufferers.