Bob
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Welcome to Phoenix Rising!
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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Even 'favouriting' the tweet (or I guess it's 'favoriting' if a US person) shows the person tweeting that there is interest in this subject. So if you have an account, it would be great if we can all favourite and/or retweet each of the tweets that I've linked to. It's easy to set up a Twitter account if you haven't got one. But a warning: Twitter can be quite a distraction once you get the hang of it! (But, obviously that's not a bad thing if one is stuck in bed or on the sofa all day!)Thank you Bob, a post like that is so easy to use if you have a twitter account. Just click on each individual links and click on 'retweet'. of course it is much more powerful if you have a bigger number of followers.
Not sure what you mean, @mfairma
to call upon or command (a devil or spirit) by invocation or spell.
I've just been looking through the tweets about Brian by the high profile journalists, and many of them have been retweeted by numerous other high profile journalists, so Brian's letter is going viral via high profile journalists. I've never seen anything like it before in relation to ME/CFS.
Even 'favouriting' the tweet (or I guess it's 'favoriting' if a US person) shows the person tweeting that there is interest in this subject. So if you have an account, it would be great if we can all favourite and/or retweet each of the tweets that I've linked to. It's easy to set up a Twitter account if you haven't got one. But a warning: Twitter can be quite a distraction once you get the hang of it! (But, obviously that's not a bad thing if one is stuck in bed or on the sofa all day!)
Yes, favouriting and retweeting is a good start. You could also reply to each of the tweets with a short thank-you message, thanking them for raising the profile of this neglected illness, or asking if they could include a feature about ME/CFS in their journal etc.So this is what people should do to get this attention?
What about other social media? I don't understand social media...
Thanks for the efforts, Brian. I think some progress may be possible.This feels like the time when NIH may just move its concrete feet. Here's hoping....
Hi...Brian here. Thank you for all the kind words and for sharing the letter. I've been told Dr. Collins read it and will be responding...we'll see. As for asking for too little - well, as a journalist, I was always deeply pragmatic. When you have two hours to write a story, you don't go for *greatest story ever*, you do what you can with the time and resources you have. I do think that the most important step now is for NIH to give responsibility for ME/CFS to one of the institutes and to publicly come out and say, We're doing something about this. Sure, I'd love a billion dollars a year set aside to help cure us all. But that's not going to happen tomorrow. It will take time to build up support within NIH for a robust ME/CFS program. Doubling or quadrupling funding would be huge. And I made it clear to my contacts in Dr. Collins' office that if they make such a move, every science and medical reporter in the world will know about it. I spent 15 years getting to know many people in the business, and I made a lot of friends. Positive media coverage is important to the people at the top of NIH, and so I hope that this carrot-with-implied-threat-of-stick approach helps make something happen. I think it's even more important that prominent scientists like Ron Davis are lobbying Dr. Collins. This feels like the time when NIH may just move its concrete feet. Here's hoping....
This is something we've been needing for decades -- someone with real media influence taking a strong media stand for PWME. It could have been a politician or a celebrity, but in this case it was a well-known journalist. The rest of us can yell all we want, until the media hears from someone it/they care about, they don't really take us seriously. Hurrah to Brian (@viggster) for being that wedge in the crack that might just drive an opening into media awareness of real ME/CFS. Sometimes all it takes is that first push to get real momentum going. Let's hope this is that push.I've just been looking through the tweets (that I've listed) about Brian by the high profile journalists, and many of them have been retweeted by numerous other high profile journalists, so Brian's letter is going viral via high profile journalists. I've never seen anything like it before in relation to ME/CFS.
Ahhh... English is my second language...
So this is what people should do to get this attention?
What about other social media? I don't understand social media...
lol, you're on a steep learning curve here.@Bob, what are these people doing?
https://twitter.com/brianvastag/status/620993700424867840
Is that retweeting, or are they sending a message to Brian and Director Collins? Or both?
I don't understand Twitter!