Building awareness alongside the Unrest momentum

[ChrisD]

I use twitter a lot to try to spread awareness of our condition and share research etc. hopefully both to those who are patients but more importantly to those who are unaware.

It is becoming very apparent to me at the moment that a number of people who tweet about ME (including myself) are essentially trapped in something of an outreach bubble - I.e. the information that we know and the public NEED to know, is not necessarily getting out there.

Of course someone like Jen Brea who has a significant following has a big voice and this is making waves, but how can we build on the momentum created from the Unrest film?

I try to always use hashtags like #MyalgicE #Millionsmissing #Timeforunrest to make sure my tweets are circulating within this domain. But then if there is news that I think should be heard by more than our community then I use more generic Hashtags like #health #medicine #healthnews etc.

I see a big opportunity at the moment what with Unrest and the fantastic article in the Independent by Natalie Wright to break through from our bubble into the public domain especially when activity is occuring such as this tweet:

https://twitter.com/i/web/status/955053958208413696

If any member of the public watches Unrest and reads the independent article, then reads that tweet, then they would surely feel compelled to condemn these opinions and will see the true colours of Psychiatrists and doctors involved in our condition. This should improve advocacy and the pace at which we move from this injustice to a solution.

And this will be done by building a bigger movement in which society is involved as well as our community. Now is the time!! Any ideas???? *Think tank*

 

[CFSTheBear]

Talk about more broad issues.

To be blunt, 90% of the tweets I see regarding ME exist wholly in an echo chamber. If one uses terms like PACE, BPS, etc etc etc, then it alienates people who have no idea what we're talking about.

So I would say engage on issues that have more global appeal and do not use isolating terms.

There is an illness, it's really debilitating and stops people from working, there isn't a cure, you tend to have it for years, decades or lifelong. There is virtually no research money spent on it. It is more common that MS. And so on and so on.

To reach more people we need to start talking with using more inclusive language. Frankly not even all people with ME are aware of the issues with say, PACE. So the idea that we shout about these things like they're universal truths can come across as very difficult to understand if you're an outsider.

 

[Andrew]

So I would say engage on issues that have more global appeal and do not use isolating terms.

There is an illness, it's really debilitating and stops people from working, there isn't a cure, you tend to have it for years, decades or lifelong. There is virtually no research money spent on it. It is more common that MS. And so on and so on.

To reach more people we need to start talking with using more inclusive language. Frankly not even all people with ME are aware of the issues with say, PACE. So the idea that we shout about these things like they're universal truths can come across as very difficult to understand if you're an outsider.

Good points. Thanks for posting this.

I was talking with some people about mailing copies the DVD to members of state and federal congresses. They told me that most likely the DVD would filed away by a staff member and never seen. So I try to think of where I can mail copies to people who have some power and will watch them.