Tweeting campaign in support of the letters of 50 experts and 171 advocates

Nielk

Senior Member
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http://thoughtsaboutme.com/2013/11/...s-conflict-of-interest-with-respect-to-mecfs/


“Please copy and paste the following tweets and tweet them on Twitter today—and then again every day until this situation is resolved to our satisfaction!

@Sebelius Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@JackKingston Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@rosadelauro Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@RepRoybalAllard Overwhelming, growing # of #MECFS advocates united w/ 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@RepBarbaraLee Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@RepMikeHonda Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@OIGatHHS Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@usgao Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@SenatorHarkin Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@JerryMoran Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@theIOM Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@HHS_DrKoh Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@DrFriedenCDC Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@NIHDirector Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@NIAIDNews Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@theNCI Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@BarackObama Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

If you wish to write your own tweets, here is the URL to the advocates’ letter: tinyurl.com/k4cqftq

Added 11/11

Tweet regarding the call for investigation by the inspector general of the IOM's conflict of interest with regards to ME?CFS

@Sebelius#MECFS patient advocate calls for #OIG investigation of #IOM contract to define illnesshttp://tinyurl.com/OIGInvestig
 
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I just joined tweeter (REALLY FAST) so I can do it, You all do your part. Is the best you can do for your health today.
 
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They suspended my account!!

This account, was suspended for sending multiple unsolicited mentions to other users.

The mention and @reply features are intended to make communication between people on Twitter easier, and posting messages to several users in an unsolicited or egregious manner is considered an abuse of its use. Plus, it bothers other users! For more information about these features and proper use, please visit our @Replies and Mentions help page.

You will need to change your behavior to continue using Twitter. Repeat violations of the Twitter Rules may result in the permanent suspension of your account.
 

Izola

Senior Member
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"You're not doing your job if you don't get threatened with contempt at least once during a trial." Harry E. Craig, Atty at Law, Ret. Good going, Inester. Izola
 

Wally

Senior Member
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I am just going to go ahead and say it even if it makes it obvious that I am not one of the cool kids. Where is there an instruction manual for Facebook, Twitter, Snapchat, Four Square, Vine, Google Chat and Chutes & Ladders? I was just beginning to get the hang of texting, writing and replying to Forum Posts and occasionally trying out the chat room, now my cognitively challenged brain is being told to step up its game and dabble in some of these other hangouts.

Any suggestions on where I can get some techno answers on how to ball play in this new social media arena? I can't be the only ME patient out here who feels like while they have been ill the world has been passing them by or alternatively they have fallen down a rabbit hole with Alice?
 
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Wally

Senior Member
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Thanks Nielk. Any place where I can find a concise, easy to read guide on the potential pitfalls in a novice using Facebook and/or Twitter. I am concerned that I will not understand all of the privacy ramifications and end up inappropriately "facing" and "twitting" all over the internet. Probably something similar to what I am doing right now. :redface::alien::zippit:
 

Sushi

Moderation Resource Albuquerque
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Thanks Nielk. Any place where I can find a concise, easy to read guide on the potential pitfalls in a novice using Facebook and/or Twitter. I am concerned that I will not understand all of the privacy ramifications and end up inappropriately "facing" and "twitting" all over the internet. Probably something similar to what I am doing right now. :redface::alien::zippit:
I use Facebook mainly cause it is about the first place you see ME/CFS news. Personally, I don't give out personal information there even though I have set strict privacy settings. You don't have to give your location, birthday or much of anything to register. Some fill in that information but use false information.

Facebook doesn't have great security but there are a lot of good things going on there, a lot of good health groups you can join (like Myalgic Encephalomyelitis Global).

So go for it, but use caution. :thumbsup:

Sushi