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

Izola

Izola

Senior Member
Messages
495
Wally said:
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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Thank you. I'm not a cool kid either. Spent much of the past 3 years in only a marginally lucid state, if even that. Guess I was with Alice when she was 10 feet tall. So, thanks to you and Neilk I'll soon be tweeting. THX Izola : ) p.s. great music, great film. Fun. : )
 
justinreilly

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
maybe i am stating the obvious, but you can usually find good basic info on personal tech questions such as these by googling 'how to use ______". The most popular and linked to webpages show up at the top, and these are usually the best. If you want just videos you can click on 'videos' in google.
 
Nielk

Nielk

Senior Member
Messages
6,970
I just tweeted. You can just re-tweet my tweets, to make it easier - @GabbyKlein1.
 
Liz Willow

Liz Willow

Messages
42
Please also add this list of tweets that link to Jeannette's recent blog post calling for HHS' Competition Advocate to investigate the IOM contract.

@Sebelius Call to investigate the IOM Contract: http://tinyurl.com/kmg9mgb

@JackKingston Call to investigate the IOM Contract:http://tinyurl.com/kmg9mgb

@rosadelauro Call to investigate the IOM Contract:http://tinyurl.com/kmg9mgb

@RepRoybalAllard Call to investigate the IOM Contract:http://tinyurl.com/kmg9mgb

@RepBarbaraLee Call to investigate the IOM Contract:http://tinyurl.com/kmg9mgb

@RepMikeHonda Call to investigate the IOM Contract:http://tinyurl.com/kmg9mgb

@OIGatHHS Call to investigate the IOM Contract:http://tinyurl.com/kmg9mgb

@usgao Call to investigate the IOM Contract: http://tinyurl.com/kmg9mgb

@SenatorHarkin Call to investigate the IOM Contract:http://tinyurl.com/kmg9mgb

@JerryMoran Call to investigate the IOM Contract:http://tinyurl.com/kmg9mgb

@theIOM Call to investigate the IOM Contract: http://tinyurl.com/kmg9mgb

@HHS_Call to investigate the IOM Contract: http://tinyurl.com/kmg9mgb

@DrFriedenCDC Call to investigate the IOM Contract:http://tinyurl.com/kmg9mgb

@NIHDirector Call to investigate the IOM Contract:http://tinyurl.com/kmg9mgb

@NIAIDNews Call to investigate the IOM Contract:http://tinyurl.com/kmg9mgb

@theNCI Call to investigate the IOM Contract: http://tinyurl.com/kmg9mgb

@BarackObama Call to investigate the IOM Contract:http://tinyurl.com/kmg9mgb
 
justinreilly

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Here are four more twitter accounts at which to tweet:
@PNASNews
@NASciences
@FinebergH
@socialsecurity

This last one reminds me that Social Security Administration is separate from HHS. I think we should be targeting them too. SSA may have less vested in this and if they come under pressure they would back out more easily than HHS. That wouldn't solve our problem, bc HHS would just make up the shortfall, but it would look bad for HHS and IoM and the report.

Here is a list of members of congress on twitter. I think it would be worth it to send tweets to them all. They won't know if you are a constituent or not if you don't provide your location to twitter (or delete it under settings). What do you guys think? Want feedback.

If we think it's a good idea, Can someone Pls volunteer to do this project? This would be a zen activity that could be done by even someone with substantial brainfog, I think. So, if you have been wanting to help but in a fog, this is something you could do (with my guidance if needed)


https://twitter.com/cspan/members-of-congress/members
 
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Liz Willow

Liz Willow

Messages
42
I am not a tweeter, so I don't know if it is possible to point these Members of Congress in the right direction via a tweet. The best way they can help is to reach out to their colleagues on the appropriations and authorizing committees for HHS. HHS must hear from these committees’ leaders.
 
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W

Wally

Senior Member
Messages
1,167
Liz Willow said:
I am not a tweeter, so I don't know if it is possible to point these Members of Congress in the right direction via a tweet. The best way they can help is to reach out to their colleagues on the appropriations and authorizing committees for HHS. HHS must hear from these committees’ leaders.
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Can someone provide me with the names and contact information for any of the committee leaders on the appropriations and authorizing committees for the HHS that you believe need to be contacted? Thanks.

Wally (a soon to be new member of the "M.E. Tweeting Club")
 
Liz Willow

Liz Willow

Messages
42
Hi Wally,

The committee leaders that would be most helpful are Senators Harkin, Murray, Alexander, Mikulksi, Shelby, Sanders, and Burr; and Representatives Upton, Kingston, Pitts, Pallone, DeLaura, Rogers, and Lowey. You'll find some of their twitter addresses (plus those of some additional Members of Congress) in the first post.
 
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W

Wally

Senior Member
Messages
1,167
Nielk said:
Regardless of the IOM panel, I have just tweeted my opposition to this contract.
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Great! Just great. :( Just when Wally is finally going to dip her paws in the big pool, this happens!!!! http://metro.co.uk/2013/12/05/two-m...er-passwords-stolen-by-criminal-gang-4216332/

H E Double Toothpicks! Wally is ready to pull all her fur out. :mad:

If any of you tweeters are available for a little more tweeting and you are not dealing with stolen password issues. I would love it if you could start tweeting in about an hour and a half (7:30 PST - my time and 10:30 am in Washington D.C./New York) about the ME/CFS demonstrations that are planned for Monday, Dec. 9th at 10:00 am in S.F. in front of the HHS Federal Building and on Tuesday, December 10th starting at 9:00 am at HHS Headquarters at the Humphrey's Building, 10:00 am at "Area 9" in front of the Capitol and at 11:00 am until 1:00 pm in front of the White House. Not sure how tweeting with limited message content works? Wally is way too verbose and cognitively challenged from just 2 hours of sleep to figure out how to condense her words into a paltry 140 characters.

Please, please help me figure out how to get the word out about these events. I am still in the process of getting written information out to key members of Congress and some media outlets regarding these demonstrations, so I am asking that the "twitter" brigade hold off until 7:30 am (PST) to allow me to get my e-mail blast out first. I have made personal phone calls over the last few days to everyone on my list of potential interested parties, but I am lagging a little behind in getting the written materials to everyone. Wally is dog tired, but she is still in the hunt just hoping that the offers to help with getting the word out about the demonstrations is still available from members here on the Phoenix Rising Forum.:p (Note - This is Wally "panting" not sticking her tongue out at you.)

I am also aware of the IOM committee member selections that were posted yesterday. I will comment online later this morning on my feelings about these selections and the advocacy efforts in the pipeline requesting that the HHS/IOM contract be cancelled. My short response for now (even if more than 140 characters) quite less than 140 characters) is I support the position stated yesterday by Jeanette Burmeister on her blog "Thoughts About ME", as well as Patricia Carter's comments on the MECFS Forums. In other words, the delivery of the petition to HHS will still go forward on Tuesday, Dec. 10th and this issue will still be part of the MECFS demonstrations on both Monday in SF and on Tuesday in Washington D.C.

Thanking you in advance for any assistance you can provide me on the tweeting front. I will also be posting a separate request for an e-mail and phone blast. Just before 7:30 am (PST), I will post the list of people with contact information (if available) that I would like to receive follow-up tweets. However, feel free to tweet to your hearts content to anyone else you think should be made aware of the demonstrations.

Wally (Susan)
 
W

Wally

Senior Member
Messages
1,167
Wally said:
So cool. Thank you so much Nielk. You are now hired as the new Social Media Director of Wally's World. Unfortunately, payment for this fantastic position is limited to "Milk Bones". :p
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Tweeters. It is taking me longer than anticipated to get my e-mails sent out. It may take me another hour or so before I will be done. Unfortunately, when my symptoms are flaring my brain has trouble connecting the dots and control of my hands becomes impaired. :(:( So I am going to slow down to try to compensate for these problems. Have no fear though - I will get through all of this sooner rather than later this morning. I have tried to enlist some help from my office assistants, unfortunately they are stretched out on the couch with their paws in the air snoring. It is so difficult these days to find good help. :D

Wally
 
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