Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
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Do you use Facebook?

Discussion in 'Action Alerts and Advocacy' started by *GG*, Jun 22, 2010.

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Do you use Facebook?

  1. Yes

    31 vote(s)
    68.9%
  2. No

    14 vote(s)
    31.1%
  1. *GG*

    *GG* Senior Member

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    Concord, NH
    I am just trying to figure out how many people use Facebook that are on this site.

    GG
     
  2. ukxmrv

    ukxmrv Senior Member

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    London
    Depends what you mean as "use". I have registered but have very little acivity. Belong to a couple of sites but not well enough to keep up due to the way it is organised.
     
  3. TerriK

    TerriK

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    Indiana
    I like the way the News feed works; it's been a simple way for me to keep up with all the many CFS/Fibro groups, etc.
     
  4. dipic

    dipic Senior Member

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    Made one up before I got sick; had all my friends and acquaintances from school, work, other places on there. About 6-8 months after getting sick I deactivated it. I've reactivated and deactivated it at least 3 times since.

    It's too hard. Too many old (obviously not as close) friends saying "OMG, I HAVEN'T SEEN YOU IN, WHAT, YEARS!? WE NEED TO GO HANG OUT/CHILL SOON!!"

    And they don't realize. And it's impossible to explain. And if you dare try, don't worry about ever hearing from them again.

    Not to mention looking through photos of friends all older, with girlfriends (or boyfriends), traveling, partying, having fun, experiencing new things, graduating college/uni (something I would have been doing with many of them a month ago had I not gotten sick), entering the real world and getting jobs. Basically, living a life that this DD stole away the ability for me to have.

    It's tough. Too tough. Even though I've come to accept that I have this horrid illness and all of it's equally terrible consequences, it still hurts too much.

    (I do... however, have a fake one with a made up name, just so I can keep up with news of various groups on there... and that's all I bare to use it for.)
     
  5. bakercape

    bakercape Senior Member

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    Cape Cod. Mass
    I do

    It's a lifeline for me to actually keep in touch with my preillness friends that I can't travel to see much.
    If anyone else has facebook I implore you to vote in the chase manhatten contest for the New Jersey Chronic Fatigue SUpport Group. I see they are almost in the top 200. We could get them and Pandora money if people that vote for PANDORA vote for them too.:Retro smile:
     
  6. Victoria

    Victoria Senior Member

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    301
    Melbourne, Australia
    I don't

    I'm not on facebook & never will be on facebook (or twitter or any other social network).

    I guess the reality is, I'm not a very social (or modern technology) person. I've never been a big technology person in the past. And I daresay, I won't be a big modern technology person in the future.

    I'm watching this morning's news at the moment. It seems in about 15 minutes, Australia will have a new Prime Minister - a single, female - Julia Guillard. If I hadn't got up early & turned the tv on, I wouldn't have known.

    This heralds a new era in Australian history.

    PS For all you Australian Facebook, Twitter users.

    Prime Minister Kevin Rudd has just pulled out & there will be no ballot.

    We now have a new Prime Minister - Julia Guillard

    I wonder what a female Prime Minister will do for Australia's Health Industry?

    Is now the time to start a fresh round of advocacy for ME/CFS/FM research funding in Australia?

    Will a female Prime Minister have more interest in Health?
     
  7. Sean

    Sean Senior Member

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    Hate FB. They are so dishonest and irresponsible with your personal info.

    Had an account, more-or-less inactive, with just a handful of family and friends. Deleted it after the last round of slippery nonsense from FB. (Yes, properly deleted the account, not just de-activated it.)

    A pox on that house.
     
  8. TerriK

    TerriK

    Messages:
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    Indiana
    Yes; FB has become a lifeline for me too; I feel more like a "real" person and less like someone forgotten and shoved aside from life. Every time I get a friend request or I have someone accept mine I am thrilled like a little kid. I started my account post-illness, so I don't have as much explaining to do. I finally got it across today to the girl ( I can call her that because she is one of my 26 yr old daughter's friends) who cuts and colors my hair that every appt with her makes sick for that day, and usually at least the day after. She didn't get it at all. Kept saying; "I try to be gentle"; no amount of trying could convince her it was the motion of my head getting moved back and forth, and the smells, and sitting up for that long. OK; guess that was totally off topic; sorry my mind wandered... will try to stay on track in future posts
     
  9. silicon

    silicon Senior Member

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    FB is a most curious phenomenon. I am now “friends” with a bunch of people from my past that I may never actually see again (mostly since I no longer live in the area I grew up in). It’s nice to see their “news flow”, if only for the sake of nostalgia. I don’t really expect any deep connections or interactions, although a couple of times I have been pleasantly surprised. Yes, most cannot relate to talk of health problems. But I did reconnect with one old friend who I hadn’t seen in over 25 years—and as we exchanged messages, he guessed that I had CFIDS--without me saying that much about it, which totally blew me away!
     
  10. willow

    willow Senior Member

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    East Midlands
    The format/layout so disorienates me I struggle to stay upright and I feel nauseous for hours afterwards. That's just looking at the front page. Can't beleive it really happens which is why every few months i check!!

    I know normals who spend huge amounts of time there. I can see it's good for some campaigns, when travelling, some ill people and various other things but I long for a real-time, face to face life that engages all my senses and is firmly located in the present. Much as the PC is a life saver for me, I wouldn't regulalrly spend time on FB even if I could.

    Also agree with Sean, there's issues with FB and personal info etc.
     
  11. frenchtulip

    frenchtulip Senior Member

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    If you are on Facebook

    Please go to: http://www.chasegiving.tk/
    and vote for PANDORA to help win free money, which will mostly go toward the establishment of the new Neuroendocrineimmune Center for research and clinical treatment. Voting is easy and quick. Your vote is appreciated!
     
  12. Min

    Min Guest

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    UK
    I do, but I deleted all my posts open to public view when the bad Scientists started posting comments from people with M.E. on their forum in order to jeer at them and to deride sufferers - they also copied one woman's photo onto their site. Their vileness made me realise how little privacy there is there when our real names are used.
     
  13. *GG*

    *GG* Senior Member

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    Concord, NH
    Good to have more "internet friends" who can help us out with Causes on Facebook and provide some awareness for our condition!

    If you are already on FB and you have the Chase Community Giving application. Here is your link to
    cast your vote for P.A.N.D.O.R.A. http://apps.facebook.com/chasecommunitygiving/charities/550795076-p...

    Link from Phoenix Rising.com supporting P.A.N.D.O.R.A. with written instructions on how to get the Chase Community Giving application on Facebook after you join Facebook or already there. http://www.chasegiving.tk/

    Link to the instructional video created by Frank Op de Beeck from Phoenix Rising.com
    http://www.youtube.com/watch?v=rxEjSwgLk0Y (English)

    http://www.youtube.com/watch?v=5hLhsGESrMM&feature=related (Dutch)

    Here is the same video on PANDORATV on our youtube.com channel.
    http://www.youtube.com/watch?v=ldugT9oaMyw

    Tips:
    1) You should cast all of your 20 votes. After you vote for 5 non profit organizations you get an extra "gift vote" to give to someone to vote, and again when you cast all your 20 votes. The gift vote is an opportunity for your to vote twice when someone gives you a gift vote. It is also an opportunity you can give to a friend, when you send them your "gift vote", giving everybody a chance to vote twice for a favorite charity. Obviously we hope you will use a "gift vote you receive" to cast another vote for P.A.N.D.O.R.A., meaning you will vote for P.A.N.D.O.R.A. twice.

    2) If you vote for another organization make sure you add a comment to their site with the link to the voting page: Here is a suggested blurb:

    What a great cause! so glad to see so many working for positive change in the world! If you are looking for another great cause to cast a vote for, please consider P.A.N.D.O.R.A. known in the contest as PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV INC. We assist individuals with chronic fatigue syndrome, fibromyalgia, Chronic Lyme disease, multiple chemical sensitivities and Gulf War Illness. Here is our link: http://apps.facebook.com/chasecommunitygiving/charities/550795076-p...

    We can move up to the top of the list, if we have your support. Just remember your vote is important to us. It could be worth thousands of dollars that will go towards the establishment of the NEI Center and for the other quality of life/advocacy programs we have.

    Thanks Again,

    Gaston
     
  14. *GG*

    *GG* Senior Member

    Messages:
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    4,576
    Concord, NH

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