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Social Media thread - advocacy action alerts

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Hi, this thread can be used to post links to social media items that require some sort of advocacy action, e.g. the action could simply be sharing Facebook posts or favouriting Tweets, or it could be making a comment on Facebook, or responding to a tweet, or thanking someone for taking an interest in ME.

Please feel free to post anything that you'd like people to respond to.

There is another thread (click here) for interesting or fun items from social media that don't need responding to or any advocacy action taken.
 
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ahimsa

ahimsa_pdx on twitter
Messages
1,921
Thanks for this thread, @Bob. I've been mostly offline for a couple of weeks (here, twitter, etc.) but I'm trying to ramp up again.

By the way, what's your twitter id? You may have posted it but I've forgotten.
 
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beaker

ME/cfs 1986
Messages
773
Location
USA
Kati has a thread w/ a tweet campaign she has been promoting.:
http://forums.phoenixrising.me/index.php?threads/occupy-nihdirector-campaign-on-twitter.39439/

I just posted something over there and thought it is worth repeating here :

kati wrote :
Tweet for today:

An Open Letter from Researchers 2 Sen Mikulski: Pts suffering from #MEcfs deserve $ cfstreatmentguide.com/1/post/2015/08…@NIHDirector#Congress

Feel free to copy and paste, alter, or simply retweet from my twitter account. Each retweet or tweet as is sends a notification to Dr Collins about ME. Let's Occupy NIh director. :sluggish:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I wrote :
I retweeted to other Congressional House and Senate Members on appropriation and health committees, as well as Congressional leaders. Please RT and/or favor ! Yes, even if you already have RT the original link Kati gives.
OK to do it even if not US citizen !
There are 11 tweets in all to cover all these reps. But the hard part is done. Just a few clicks please.

https://twitter.com/beaker1986/status/637570396750004224
https://twitter.com/beaker1986/status/637570318853402624
https://twitter.com/beaker1986/status/637570248498151424
https://twitter.com/beaker1986/status/637570119191908352
https://twitter.com/beaker1986/status/637570036677410816
https://twitter.com/beaker1986/status/637569926182633473
https://twitter.com/beaker1986/status/637569829470380032
https://twitter.com/beaker1986/status/637569737053110272
https://twitter.com/beaker1986/status/637569659622039552
https://twitter.com/beaker1986/status/637569545255976961
https://twitter.com/beaker1986/status/637568978911653888

Thank you ! Let our voices be heard !
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
It's not going to happen. That's not the way debates and interviews and journalism works.

I would not support getting mixed up in any of this.

I am not saying I agree with it, just a way to possibly raise more awareness of our plight?

GG
 

beaker

ME/cfs 1986
Messages
773
Location
USA
I am not saying I agree with it, just a way to possibly raise more awareness of our plight?

GG
I see your point. But I think it is so off topic, that it would get lost.
The comments are going to be(and are) political.
I think it is basic on line etiquette to stay on topic. I have seen where a certain group of lyme patients jump in on comments that aren't directly connected and they haven't been well received.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
This tweet, an article written by Julie Rehmeyer about science and ME/CFS, is definitely worth re-tweeting:

https://twitter.com/julierehmeyer/status/641339023730962432

For those who don't have twitter, here's a link to the article mentioned in the tweet:

http://www.senseaboutscienceusa.org/epistemically-challenged-julie-rehmeyer/
(updated link to go to original site)

First paragraph from the article:
My thinking about science has been very strongly affected by my experience with chronic fatigue syndrome (CFS). Science has not served this illness well at all, and as a result, my perspective on the illness has been pushed from, “Okay, I’m going to use science to get better!” to “Wow—science is pretty shitty here.” I haven’t had have the luxury of saying, “Fine, I’m going to go work on something where the science is better. I had to get better.
 
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