• 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.

    To become a member, simply click the Register button at the top right.

How to use twitter for advocacy

W

worldbackwards

Senior Member
Messages
2,051
BurnA said:
@Cheshire I like it but before you go to print I have a comment :
Is the sf36 scale on the x or y axis ? The label appears like it's the y axis but the color scheme looks like the x axis so I was a bit confused. I assume its the x axis but in the first dwg the 80 of recovery is above the 65 also hinting that it might be the y axis.

Maybe make it clearer that the pink zone is me/cfs and the green is recovery ?

I hope you don't mind these comments, indeed others may not agree so feel free to ignore.
Click to expand...
No, I think you're right, It's confusing. Graphics like this need to be understandable in an instant.

If you're explaining you're losing!
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
@Cheshire, I think that's really great. I really like it. :thumbsup:

If you label the x (horizontal) axis as "SF-36", instead of the y axis then I think it'll be perfect.

And "SF-36" is a bit technical, so perhaps you could label it "physical function score" instead? Or "SF-36 physical function score"?

Also, a minor point, is that the original recovery threshold was 85 points, not 80.

You could also perhaps label zero and 100 on the x axis, if that doesn't clutter it up too much?

Also I'm not sure if 'advices' (plural) is a word? It might be, but 'advice' might be a better word?
 
Effi

Effi

Senior Member
Messages
1,496
Location
Europe
BurnA said:
Can I ask anyone who isn't on twitter to sign up and start using it now ?

Can I ask anyone who still isn't on Twitter - why aren't you ?

Seriously - please explain why you are not on Twitter.
Click to expand...
I tried it a couple of months ago but I stopped because I found it overwhelming. My brain couldn't keep up with it for some reason. But I do think it's an excellent tool for patient advocacy so I'll give it another try. Thanks for the nudge ;)
 
BurnA

BurnA

Senior Member
Messages
2,087
Effi said:
I tried it a couple of months ago but I stopped because I found it overwhelming. My brain couldn't keep up with it for some reason. But I do think it's an excellent tool for patient advocacy so I'll give it another try. Thanks for the nudge ;)
Click to expand...
Yes it can be a bit overwhelming and confusing at times. Give it another go and see how you get on. Maybe limit the no. of people you follow for a while until you get used to it. ?
 
W

worldbackwards

Senior Member
Messages
2,051
@Cheshire, I was perhaps a bit abrupt before, so I wanted to be more constructive because it is very nice - too many internet memes on all subjects look a bit ugly and clunky, whilst this appears to have had some time spent on it and is attractive to look at, which is always a start to grab people's attention.

But I agree with what Bob says about making it easier to understand, especially on labelling the axis - higher for good and lower for bad seems simpler all round.
 
Cheshire

Cheshire

Senior Member
Messages
1,129
@BurnA @Bob @worldbackwards Thanks for the comments! I made a new version following your advice.
upload_2016-1-2_17-3-52.png

upload_2016-1-2_17-4-35.png

worldbackwards said:
I was perhaps a bit abrupt before, so I wanted to be more constructive because it is very nice
Click to expand...
Don't worry, I didn't think it was abrupt, I asked for comments! Thanks.

@Bob I couldn't add 0-100 graduation, too complicated!
 
BurnA

BurnA

Senior Member
Messages
2,087
David tuller only has 631 followers on twitter.

This man has done more in the past few months for PWME that we could have hoped for.

Can someone explain why more pwme aren't following him ?
 
Effi

Effi

Senior Member
Messages
1,496
Location
Europe
@BurnA I am doing SO very little on twitter, but I am following Tuller.:rolleyes: It struck me too, that had very few followers as opposed to Coyne whose efforts for pwme gave him loads of extra followers...
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
BurnA said:
David tuller only has 631 followers on twitter.

This man has done more in the past few months for PWME that we could have hoped for.

Can someone explain why more pwme aren't following him ?
Click to expand...
David only rarely used his Twitter account before he published the first of the recent Virology blogs, and I think he only had a handful of followers. So he's not done too badly in the one or two (?) months since he first published on Virology. But, yes, I agree that we could be doing much better in general on Twitter. I'd like to see hundreds of thousands of ME patients using it, but the biggest following any ME-specific account (that I'm aware of) is roughly 6,000. Edit: David didn't even know how to use Twitter a couple of months ago - he's been learning about placing the dots in front of the usernames etc.
 
Last edited:
You must log in or register to reply here.