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Facebook Phobia a CFS issue?

Discussion in 'Action Alerts and Advocacy' started by Sasha, Jun 28, 2011.

  1. Sasha

    Sasha Fine, thank you

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    There is up to $350,000 available in free money in the Vivint charity contest, which which requires a Facebook account to vote. Those of us trying to drum up support on the forums for the ME/CFS charities taking part have been puzzled by what seems to be a reluctance among many PWC to get themselves a Facebook account or to use their existing account to vote.

    I think that Facebook raises some particular fears for PWC a fear of invasion of privacy, a fear of people trying to make demands of their time via Facebook, a fear that information on their Facebook page might be used against them or might indicate to the world that they have this stigmatised illness, a fear that an account will be impossible to set up and manage due to cognitive issues, and so on.

    But I dont believe that these fears are well-founded. Id like to explain why not and invite anyone with any remaining concerns to comment and let people familiar with Facebook address those concerns in a spirit of help and support. :Retro smile:

    And of course Id like everyone who has had their worries soothed to open a Facebook account and get voting in the Vivint contest! This is a small thing to do but with huge benefits for our community.

    :eek: Ive got a Facebook account but Im scared that if I vote for an ME/CFS charity, people will see that on Facebook and Ill be outed

    When you vote, there is a message just above the "vote" button asking if you want your vote announced on your Facebook wall. The default option is "yes" but you can just click it to "no thanks".

    If you leave it on "yes", the message that appears for the WPI is:

    I just voted Whittemore Peterson Institute on the Vivint Gives Back Project. Vivint is giving away $1.25 million dollars to local charities and I want Whittemore Peterson Institute to win.​

    or for the National ME/FM Action Network is:

    I just voted National ME/FM Action Network on the Vivint Gives Back Project. Vivint is giving away $1.25 million dollars to local charities and I want National ME/FM Action Network to win.​

    So even if you have the message, theres nothing to show that you are ill, just that you are generous! :angel:

    :eek: I've got a Facebook account and when I clicked "like" for Vivint as you have to, it said I had to give Vivint permission to access my info. What are they going to do with it?

    A friend of mine got confirmation from Vivint that they use the "like" thing to track votes and to give voters the facility of easily sharing details of the contest but they won't do anything at all with your information - it's just that Facebook automatically imposes that message when you hit a "like" button and Vivint can't get rid of it.

    :eek: Im scared that if I get a Facebook account, it will give away my private details

    No problem! Dont put any private details on. If theres a field that requires a compulsory response, put a false one if you wish.

    Dont even want your name on Facebook? Set up a new, free email account with Yahoo, Google, etc. in an assumed name and use the same name to set up a Facebook account. Its important that the names match because this is often checked for voting fraud. Dont open multiple accounts for yourself, though thats cheating and there are ways of detecting it.

    :eek: Im worried that if friends and family see me on Facebook theyll start contacting me on it and Ill be overloaded

    If youre using your real name Id suggest not listing your city or listing another city to avoid being uniquely identified and just ignore all attempted contact. No-one will know its you (unless your name is ultra-unusual, in which case consider the assumed name strategy. Anyone who is really important in your life already has your email! Doesnt matter to them or to you if you ignore them on Facebook.

    :eek: What if someone posts something on my Facebook page that suggests that Im much more active than I really am and it loses me my disability benefits?

    Only your Facebook friends can see messages from your other friends and only your friends can post on your Facebook page. To be a friend, someone has to send a friend request to you and you have to accept it. Just dont accept anyone as friends! Youre creating this account purely to vote.

    :eek: Im sure I wont be able to get through the sign-up process, Im too brainfogged

    If I did, anyone can! Sign up here.

    So, what are you waiting for? No, seriously, what are you waiting for? Please tell us and see if we can help and/or reassure you!
    warriorseekspeace likes this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Thanks Sasha,

    I have heard people with existing Facebook accounts balk in the vivint registering process when a notice comes up about giving access to your information--think it is a vivint notice? I didn't know what to say. I just ignored it and registered anyway. Can you tell us anything about that?

    I am sad to see the WPI slipping nationally this last week.

    Thanks,
    Sushi
    warriorseekspeace likes this.
  3. Sasha

    Sasha Fine, thank you

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    Thanks for raising that, Sushi - it's extremely helpful to know about people's worries and I can understand why they would be concerned about that. Here's what it says on the contest website:

    Why do I need to become a fan of Vivint and provide access to my information? Will I receive email communications from Vivint by becoming a fan?

    The purpose of becoming a fan of Vivint is so that administrators are able to track participant votes. It also allows you to spread the word about the Project because you can comment on the charities that you vote for, and notify friends about the program. We hope that you will use the fan page to create awareness about the opportunity charities have to receive donations from Vivint's philanthropy fund. It has no direct tie to Vivint's business mail or email campaigns.​

    Can experienced Facebook hands tell us if becoming a fan and allowing access to personal info is the same thing?

    I'm just off to bed (UK!) but will edit this question and responses into my first post.
    warriorseekspeace likes this.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Again thanks--most helpful to see the "fearsome dragon-words" written out for us to analyze.

    Just another point, if you do choose to have a notice posted on Facebook when you vote, it helps you to remember to vote the next day and gives you a link. So many of my friends are voting that all I have to do is click on one of their notices and then one more click to vote.

    I'd never remember otherwise!
    Sushi
    warriorseekspeace likes this.
  5. SpecialK82

    SpecialK82 Senior Member

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    Great thread Sasha :thumbsup:
    warriorseekspeace likes this.
  6. Dolphin

    Dolphin Senior Member

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    Good point that voting can advertise/remind family, friends and Facebook friends.

    If one is on Facebook, as my signature says, one can sign up to events and then get daily E-mail reminders to vote.
    warriorseekspeace likes this.
  7. Lynn

    Lynn Senior Member

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    I think it is safe to say that I have Facebook phobia.

    I registered on facebook last year just to participate in the Chase contest. My solution to the phobia was to put in as little information as possible while registering. That way I am not worried about Chase or Vivint having information that I don't want them to have. On the flip side, I did have a few old freinds contact me. That was a nice perk. Nobody in my friends or family expects me to do facebook just because I have an account.

    I am voting every day in the Vivint competition - facebook phobia or not. We need those dollars to go to research our disease.


    Lynn
    warriorseekspeace likes this.
  8. camas

    camas Senior Member

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    I've noticed that the younger generation of females among my facebook friends tend to use just their first and middle names rather than entering a surname, ie. Heather Ann or Hollie Dawn. I'm assuming that's to provide a bit of privacy. Not a bad idea if you only want contact from close family and friends.

    I actually enjoy hearing from old friends and looking at photos of their kids and grandkids, even if it does make me feel old!

    I'm dutifully voting first thing every morning through mine and my partner's accounts. It's easy to remember when you've been doing it for awhile and takes a grand total of 30 seconds.
    warriorseekspeace likes this.
  9. Sean

    Sean Senior Member

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    Phobia? Hardly.

    There are very good reasons to be wary of FB. The history of their flippant attitude to people's privacy leaves an awful lot to be desired, and that is not a trivial issue in the internet age.

    However, I have an account just for voting for stuff like this.
    warriorseekspeace likes this.
  10. taniaaust1

    taniaaust1 Senior Member

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    I had this big debate last year with someone and for some of us it comes down to not having good family understanding and good friends and the too many expectations they put onto you which physically and mentally you cant cope with.

    Another poster here said the following
    It's completely different in my family. My sisters ask at times (I dont see them often but when I do see them its a common thing for them to ask me) when will I use facebook and I currently do and can keep telling them I wont. I dont want to be caught up with being asked to do things I are not up to doing .. be it minding children and whatever.

    They would be very offended if I signed up for something and didnt then let them know I had and I dont want to be lying to my family nor do I want to be offending them... and hence then upsetting them along with upsetting myself.. so hence i wont join it. I end up very very upset if I have to lie to someone and I find it disturbing. (Having Asperger's.. Im actually also unable to lie anyway and if I tried.. they'd notice it as I go very very red.. as I think very badly of it and feel very very horrible and embarrassed if I try to do it).

    and no one should tell or expect another to lie.. for some of us it is very morally wrong and goes against our morals. Last year i had people expecting me to do it and lie to my family. I find that quite shocking. sorry for anyone thinking that.. I wont drop myself down to your level. I see lying as like a sin. (im still shocked that someone here last year expected me to lie to those Im closest to with no respect for how upset that would make me feel or the trouble it would cause me).

    So for me.. even if I used an account with not my details on.. I'd be found out by my family and it would cause family issues. Like many of us at this site.. my family dont understand just how bad this illness is (they dont give me any support and hold expectations of me which make me sick when they put them onto me so I do restrict my contact with them.. hence no online contact). So not having facebook protects me from all that.

    (I dont answer them on my email or anything.. actually I only go to my email account once every few months and glance at it.. the only contacts with people i know on computer I have is here and one other site .. I find any other socialising too much for me to handle hence my families desperation to have me on facebook in some way.).
    ........

    Last year i also had severe issues with learning anything new due to struggling to comprehend new things.. hence going to new site and working out how to sign up would of been a lot of brain work and highly stressful.
    Im doing much better this year with my comprehsion and far less brain fog so doing new things isnt a concern now and if it wasnt for how my family is, I would of joined it this time. But I know from how i was last year brain wise.. just joining up in a new site and working out how to vote.. for some would be very hard.

    I actually do need some help right now.. Ive been trying to change my signature to add that canadian group into it to encourage voting for them.. but I cant figure out how to change it.. Im getting a brain blank as I added it there okay the other day.. today thou when I tried to change it, I end up in the wrong place in an area Ive never been before (to set the forum colours or something) rather then the place which changes the signature.
    (note..thou I dont vote.. I do do whatever I feel up to doing to get others to vote and hence my signature has been as such for at least past few days or so).

    Can someone please give me easy step by step instructions on how to change my signature here so I dont just have the WPI mentioned? Thank you.

    To the question of Facebook Phobia - A CFS issue? I'd have to say.. whether its cause of hard to comprehend instructions or an issue with families or expectations. It all comes down to CFS... I think it puts us at a disadvantage which the other groups dont have so hence harder for us to get voters out of our ranks.
  11. taniaaust1

    taniaaust1 Senior Member

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    now I feel embarrassed. I just seen Sashas thread explaining how to do the signature... that must of been what I followed to put one on my thing days ago but my brain forgot so I couldnt figure out how I'd worked it out. (thou my brain is much much better to the point I say its now good as I do feel its good as its nowdays functional, it still does have issues)

    I'll try to change my signature using that.
  12. gregf

    gregf Senior Member

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    Sorry, but I disagree. These are valid concerns about using Facebook.

    Facebook is not for our benefit. It is a self interested corporation that makes money by
    selling our personal information. It is designed to draw you in and consume more and
    more of you time.

    For example FB starts by getting you to create an account with your email address.
    It then prompts you to log in and you type in that email address's password. Too
    late, you have now handed FB access to your email account, possibly giving them access
    to important financial information, certainly your acquaintances. That is a despicable trick

    I have private insurance and they once sent an assessor (think detective) to interview
    me at home. This was recorded. One question he asked was "do you use any social
    networking sites"? Their strategy is that if you do, then you are well enough to work.
    ME patients should be warned of this risk.

    There will be persistent "friend requests" and groups to join and administer, all of
    which takes more time. Friend requests are hard to ignore for courteous people.
    Or are you going to explain to each person, why you don't want to be "friends"

    I have 25 years of technical IT experience and I have great trouble understanding and
    foreseeing the security risks of changing, or not changing FB security settings.

    My advice is if you want to help ME fundraising by using FB, and are well enough to do so, then ...

    1. Create your account without your family/surname.
    2. Add NO personal details like address or phone numbers.
    3. Do not add photos.
    4. Do not say you are ill if you hope to work again. Prospective employers check a persons
    FB page before employing you.
    5. Do not accept friend requests as this will be never ending and draw you into the web.
    6. Keep people, app and events that you "like" to a minimum. Liking something is
    giving them access to your information. Unlike when no longer needed.
    7. Be prepared to deny using FB or be in a position to show your use is minimal.

    All of this is hard for patients with brain fog to process.

    Twitter is far safer as it is simple and you can be anonymous. Their business model is
    to make money selling information on what 1 million+ of us are thinking.
  13. taniaaust1

    taniaaust1 Senior Member

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    :) greg.. so you think that too. That is another reason why I really are against facebook and I'd find it hard to bring myself to use it even without my bad family troubles. I wasnt game to say that one so applaud your bravery to say it. I think of facebook as being part of the New World Order so like a dark thing, something i wish wasnt around. It just gets bigger and bigger with more power, the more people join it. (they can know peoples habits and even when someone is awake due to just people clocking in.. and sooner or later most will start to give info onto it as its very addictive).

    (wondering now if its an aussie thing to have such concerns. No trust in people in higher places, governments etc etc. hahaha right now we do have good reasons not to trust our government).
  14. Tulip

    Tulip Guest

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    The solution around privacy issues is to set up an account with a fake name with a brand new email address that no one else has been given (so you can't be searched for). That is what I have done because I have NO intesrest in talking to people I know on it and I am only there for the latest ME research info.
    warriorseekspeace likes this.
  15. Tuha

    Tuha Senior Member

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    I think all the problems which were described here you can avoid with "fictive" facebook account (maybe except if you feel that you would lie). So you create an account with different name, you create a new email account and thats it. All the informations which you give to facebook are - your name, place and the date of your birthday - you dont have to give any other informations and everything can be fictive.

    The last year because of Chase community giving I did the same - during the year I had no problem because of facebook - no aditional informations, no friend found out that I am on facebook,....
    If someone feel too brain foggy and think that its to difficult for him to make a facebook account - I can do it for him with new email adress and all fictive informations.
    warriorseekspeace and Sing like this.
  16. taniaaust1

    taniaaust1 Senior Member

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    Tuha that is an excellent idea for some of those who's comprehension issues are what is stopping them from doing a facebook account :) , many of the community often does want to join in with things and are saddened that they cant. I hope your offer helps someone.
    warriorseekspeace and Sing like this.
  17. Sasha

    Sasha Fine, thank you

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    Hi gregf - I agree that would be appalling if it was the case but the registration page calls for your email address and then "New password". My Facebook password is not my email password.

    I've just got out of bed and am short of time but just wanted to address that issue because email security is very important!

    Thanks everyone for your comments on this thread - your honesty is very helpful.

    I'm sorry I shocked you by suggesting deception with an "assumed name" account, Tania - I understand that not everyone distinguishes between a "white lie" and one intended to be harmful and I respect your view on that - we're all built differently! Anyway, I'm glad you got your signature fixed.

    I hope to respond in more detail later on - meanwhile, I hope others will continue to weigh in, especially as I am no Facebook expert (my account exists solely to vote and I use no other Facebook functions).
    warriorseekspeace and Sing like this.
  18. Sasha

    Sasha Fine, thank you

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    I've just reviewed this thread, which I read early this morning and thought was full of sticky issues which I would need to address but having just gone through it again, I see that it isn't! Generally people who feel cautious about Facebook seem happy to set up an account either in their own name but with minimal information or one that is a limited version of their real name, or an assumed-name account just for the purposes of voting. I think that all of these strategies offer good privacy protection while allowing you to vote.

    Tania, I think you are in a special nightmare scenario due to your friends and family not really understanding your situation and your understandable unwillingness, given your views, to make even a benign deception. Under those circumstances, I hope you don't feel bad about not voting, especially since you are doing a great job in advertising the contest with your signature. You are still making a valuable contribution!
    rosie26, warriorseekspeace and Sing like this.
  19. Min

    Min Senior Member

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    I vote every day & immediately go to my privacy setting and edit it stop Vivint having access to my personal information.
    warriorseekspeace likes this.
  20. gregf

    gregf Senior Member

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    Just to be clear I commend Sasha for helping to get the number of ME charity voters up. :thumbsup:

    I am just saying, better to acknowledge and explain the risks.
    Then people can judge their health Vs the issues before joining in.

    I am happy to explain a little on twitter but won't hijack this thread. :angel:
    warriorseekspeace and CJB like this.

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