Please also like the TED Talk on facebook: https://www.facebook.com/TED
Some annoying comments there.
Some annoying comments there.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.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.
YesAlso, did anyone notice in the video at 14:27 @Valentijn (or someone with the same name) features in a poster at the Millions Missing march? Was that you, Valentijn?
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 .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.
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.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 .
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.
needs to be visible on youtube or facebook for it to go viral though
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.
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".
Ok I've de-trolled the Youtube video comments, at least the ones up to now.