1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
Discuss the article on the Forums.

Funding our research 2

Discussion in 'Advocacy Projects' started by Omar88, Oct 14, 2012.

  1. Omar88

    Omar88 Senior Member

    Messages:
    335
    Likes:
    160
    are we getting to next point ?
  2. caledonia

    caledonia

    Messages:
    2,830
    Likes:
    1,422
    Cincinnati, OH, USA
    I think this is an awesome idea. I think the only way we're going to get a celeb is to network our way in. Ever heard of the Six Degrees of Kevin Bacon? Supposedly, everyone is only 6 people away from knowing anyone.

    Would you respond better to a message from a friend of a friend of a friend, or a letter out of the blue from someone you don't know?

    Maybe not even contact a celeb at first, but maybe a celeb's maid, hairdresser, makeup artist,etc. They may be able to identlify people for us.
  3. Omar88

    Omar88 Senior Member

    Messages:
    335
    Likes:
    160
    So what do you think of the best way to connect those celebrities ? Twitter, Facebook, throw some shows or do you have other ideas ?
  4. caledonia

    caledonia

    Messages:
    2,830
    Likes:
    1,422
    Cincinnati, OH, USA
    No, actual networking, between people who know each other. You can use work connections, friend connections, relative connections or whatever.

    Let's say we wanted to get in touch with Ellen Degeneres. Wikipedia is a goldmine for finding connections. She grew up in Metrairie, Louisiana. She has a brother, Vance. She went to Atlanta High School and Grace King High School. She has a cousin, Laura. She started out performing standup comedy at small clubs and coffeehouses. She is a lesbian. Her show is filmed in Burbank, CA, so presumably she lives in LA. She's worked in films, comedy, acting, etc.

    Does anyone on this board know anybody even remotely linked to Ellen - grew up in the same town, went to the same school, worked at the comedy club, knows someone who knows one of her relatives or one of her domestic partners, knows someone who knows her via a lesbian organization, knows someone who knows someone who worked with her on a makeup commercial, etc. The possibilities are many.

    I would actually suggest not having a certain person in mind. What we want is behind the scenes "dirt" on celebs. We need to identify which celebs have a friend or relative with ME/CFS, or who has a mysterious fatiguing illness. So we need to find a friend of a friend of a friend who, say, works in the film industry in LA who would have this kind of inside knowledge.

    We should also form a private group so we can work on this, but the info is not broadcast all over the internet.
    Omar88 likes this.
  5. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,884
    Likes:
    4,823
    Sth Australia
    Sorry Omar.. Im back again now... had to avoid the site till "my" emotional issues settled (and I was trying to function at a level beyond exhaustion too..that level of exhaustion is a trigger for me too). I know you arent the issue and I was struggling very much to stay rational with my hormones as as you can see the avocacy is an emotional trigger for me.

    Its not that I never got what I "thought was coming" as my expectations in this area have always been low (if getting change with our illness was easy, it would of happened long ago!!). But rather just the time and the degree Ive exhausted myself over it all and I just keep on exhausting myself over it. Im not about to give up on advocacy etc and never will unless Im dead. I take myself to my limits (and over) doing it.

    I'll go and delete those aweful posts I put up here if the mods already havent.
    Back now and calm :)

    edit. I deleted one post and toned down another.. (its up to you if you want to remove your responses to my posts or not).
    Omar88 likes this.
  6. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,884
    Likes:
    4,823
    Sth Australia
    I think it all depends on what the person has and hence what they are calling the disease they have. "Chronic Fatigue Syndrome".. where I are, most have heard of that or if they havent they do get negative misconceptions just from the name. Ive found that to be so over and over again. Its cause of the misconceptions of this disease, its why an illness affecting so many and many seriously too has been ignored. General society has misconceptions when they hear of CFS.

    Im very surprised to hear someone here say that society hasnt got misconceptions over chronic fatigue syndrome that certainly isnt what most of us have experienced (Ive lost friends over the misconceptions to do with this illness, over the knowledge they had from general publics views on this illness).
  7. Omar88

    Omar88 Senior Member

    Messages:
    335
    Likes:
    160
    Those are great ideas thanks !
    So know could you guys help to make a list of 10-20 people that we should target am not from USA and i dont know all the celebrities there so that would help me to start stalking them
  8. caledonia

    caledonia

    Messages:
    2,830
    Likes:
    1,422
    Cincinnati, OH, USA
    Omar, I have created a Group called Celebs for ME/CFS. I made the threads private so only group members can see them. I would like to continue the discussion there. I have some more ideas.
    taniaaust1 likes this.
  9. Omar88

    Omar88 Senior Member

    Messages:
    335
    Likes:
    160
    Send me the link please
  10. caledonia

    caledonia

    Messages:
    2,830
    Likes:
    1,422
    Cincinnati, OH, USA
    Just go to the Groups tab at the top of this page, and you'll see it among the list of groups. Celebs for ME/CFS.

See more popular forum discussions.

Share This Page