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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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help "re-brand" CFS

Discussion in 'Action Alerts and Advocacy' started by fresh_eyes, Dec 13, 2009.

  1. Koan

    Koan Be the change.

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    Yes, oh brilliant one!!!
     
  2. fresh_eyes

    fresh_eyes happy to be here

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    Good stuff, Kurt. A lot of food for thought, there.

    One further goal comes to mind, or maybe it's two: Help people feel that they'd like to ACT to help people with CFS, and Help people feel that their effort will be effective, that it's not a hopeless cause.

    Actually, heck, they could just feel so terrified of CFS that they urge the government to protect them from it! Maybe that's a more realistic goal???
     
  3. gracenote

    gracenote All shall be well . . .

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    more research, more money

    Fresh Eyes: I think what you're doing is incredible. Thanks for doing it and for showing your work to us. This is not a skill that I have.

    Mark brings up a good point about what are we really wanting to happen. I do realize that this thread is all about rebranding CFS. But what if we want to seize the moment and be all about fundraising because we are on the cusp of a new day for CFS but we need more research and more money for research? Would maybe an awareness campaign around the medical aspects of CFS and what can be done NOW to help turn the tide towards real help and real cures be the thing to work on?

    Maybe not just CFSers are coming out, but researchers, scientists, doctors . . . We're the new thing.
     
  4. fresh_eyes

    fresh_eyes happy to be here

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    Gracenote, thanks for your thoughts. My sense of it has been that CFS is so hobbled by its tainted "brand" that nothing else ever really takes off - but then, that's my area of interest. I would love it if people with different skills and dispositions wanted to all work together on different facets of a campaign; Levi's amazing "joint resolution" thread comes to mind. Sooooo...Do you know anything about fundraising?? :D
     
  5. gracenote

    gracenote All shall be well . . .

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    not the peanut gallery

    You talking to me?

    No. I don't know anything about fundraising. Wish I did. But then I have no energy for it, either.

    I think my offering will be as part of the peanut gallery.
    Just educated myself about what the peanut gallery is and nope, I'm not part of that either. No heckling from me. I'll just have to keep working on what it is that I might contribute for the good of all. We shall see.
     
  6. Dr. Yes

    Dr. Yes Shame on You

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    Laboratory images, too

    Just building on Gracenote's great point...

    A very "legitimizing" image that could be used in ads would be of lab techs doing their thing (whitecoats, gloves, micro-pipettes, fluoresced DNA band images in front of them); without even having to put words to it, it creates in the public mind a perception of medical (physical) validation of CFS.

    I think this would be very important because, as we've all seen, there are plenty of moving ads about how depression can take your life away, or take you out of your life with your family, etc (including one very recently with a "fading" motif involving a mother and her young daughter, I think). So unless we focused in some way on the physical nature of CFS, we could still wind up being confused with people who have psychiatric illnesses...or at least not separated from them sufficiently to combat the stigma or psych propaganda.
     
  7. Koan

    Koan Be the change.

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    If XMRV pans the message will be completely different. If XMRV pans, the most effective message will be self interest. Unfortunately, that's almost always the most effective message.

    There's a lot of message clutter and a lot of crises. Frankly, if I didn't have this, it would not get on my radar. If I didn't have it and I fully understood it, without XMRV, it would still be a very low priority behind many other issues and several other illnesses and health concerns.

    Moving people from disbelief to compassion is a HUGE journey! If we think back to early days of AIDS it was not until people understood that AIDS touched them in some way, that they were really very interested. That's sad but it's just the way it is. And, AIDS was killing swiftly and horribly.

    XMRV gives us self interest and self interest is a very, very powerful motivator. Without XMRV it's a whole different battle.

    I think, no matter what happens with XMRV, CFS OUT works! So does "Takes Lives".

    But the XMRV piece is big and it will dictate the shape and purpose of the message. We may find we may not want to push "death" because we won't want to be seen as its agents. Or, we may. I don't think we can know now.

    So, flexibility and fluidity are the name of this game now. I don't think anyone should shut down any forward impetus and energy they may feel since, with us, who knows when it will come again but I'd advise staying ready to adapt as we know what's what.

    But, Fresh, you are off to a brilliant start!

    Many, many thanks for you!
     
  8. Koan

    Koan Be the change.

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    That's where I saw it!!! I knew I saw that somewhere!

    Thanks Yes!

    ETA Uh oh, I wonder if they said it "takes lives"?
     
  9. gracenote

    gracenote All shall be well . . .

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    our new slogan

    From Kim's new thread we have our new slogan! :D:D:D

    We're not a bunch of sick whiners!
     
  10. Dr. Yes

    Dr. Yes Shame on You

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    Been wondering...

    Should we ourselves be legitimizing the term "CFS"? I know it's much harder to make "ME/CFS" sound catchy or memorable, but if we're trying to get the Canadian definition accepted in the US one day, it may be important to make the transition in terminology... If we are seen to embrace "CFS" as well, we may get stuck with that term for even longer...

    Koan is right (as usual) about the future shape of advocacy/publicity being up in the air with XMRV... I hate to say it but self-interest did seem to be the only thing that worked for finally getting public awareness of AIDS; once enough people knew people who died, or feared for their own health, it was taken seriously but AIDS patients were "avoided"... The public perception softened and became more humane with help from Hollywood and various celebrities (Magic Johnson, etc). If XMRV pans out but does not receive proper funding in the CFS area nor sufficient media coverage I think most groups (including the CAA) will start emphasizing the self-interest angle.

    But I don't think we would need to abandon the sort of awareness campaigning Fresh eyes is proposing.. It could just give it added heft, while the message remains a humanizing one.

    Hope some of the above made sense...tired/crashy...:confused:

    ETA - I don't remember if they used the words "takes lives", Koan... but it wasn't their catchphrase, at least...
     
  11. Lily

    Lily *Believe*

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    I agree Dr. Yes

    Death was the fear with aids - with XMRV will people fear being 'tired' 'fatigued'? I don't think so.......some how they have to see the 10, 20, 30 years of being homebound and worse - we have to be depicted as we really are.
     
  12. shrewsbury

    shrewsbury member

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    No - we're not whiners. In fact, I find us quite entertaining and erudite company.

    But thats a perfect segue for something I feel is really important; the language we use in any message.

    Charityfundraiser brought up this point in another thread.

    The article he provided a link to, Helping patients separate true health information from false, included the following:

    There is also the little I can remember of linguistics (oh moment of anguish!). Sorry too tired to look for references unless it becomes important. With transformational grammar, the underlying structure of language, Chompsky I believe, the basic meaning units are nouns and verbs. Negatives, modals, adjectives etc carry secondary meaning, and pronouns, conjunctions etc are tertiary. So repeating I will not eat chocolate is actually reinforcing eat chocolate

    If a message is framed using negatives, the opposite is usually remembered.

    I think maybe some of this underlies why fresh eyes slogans are so powerful - nouns and verbs, positive, easy to repeat, reinforce and remember correctly.

    islandfinn:)
     
  13. CJB

    CJB Senior Member

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    Here's one -- "CFS -- what have you heard?"

    Get the message out that there's news......
     
  14. gracenote

    gracenote All shall be well . . .

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    some late night thoughts

    Excellent post, islandfinn.

    I was just looking through AARP's magazine and they had an article about chronic illnesses called "Take Charge of Your Health."

    nearly half of all adults in America live with at least one chronic disease
    chronic diseases are now the leading cause of disability and death in the United States
    nearly one in two adults live with at least one chronic disease, and more than one in ten have three or more

    Although it was a good article and had good tips on "how to live life on your own terms," it was kind of depressing. It was about maintaining rather than getting better, finding a cure, and moving forward.

    When we brand CFS, I think we might want to try really hard not to connect to these:

    an aging chronically ill population (no offense intended I am one), which is growing larger in number and influence
    middle aged women (sure there are more of us with CFS and I am one) who are represented by ads for fibro and depression

    Instead, I think it would be good to include:

    a variety of ages, both male and female
    diversity in nationalities, incomes, dreams, occupations

    And instead of the life that's been taken away, it could be the life we could be living with the right treatment and cure.

    As I said in my title, these are just some late night thoughts. Things may look different in the morning.
     
  15. cinderkeys

    cinderkeys

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    Stupid name for a serious disease

    I'm a songwriter/musician, and I wrote a song about somebody living with ME/CFS. Coincidentally, when we play the song live, I introduce it in almost exactly those words. "... If you haven't heard of ME before, that's because most people refer to it as 'chronic fatigue syndrome,' which is a *stupid* name for a very serious disease."

    That someone else thought of the same wording, and another person thought it quoteworthy, makes me feel like I'm on the right track. :)

    Fresh Eyes, I like your ideas. If you ever do decide to make a video, I'd be happy to let you use the aforementioned song, "Everybody Knows About Me." You can listen to it at http://myspace.com/cinderbridge to see if you think it would work.
     
  16. Khalyal

    Khalyal Guest

    Wowee!

    Dang, I sleep for a while and look what I miss! Look at you guys go! This stuff is brilliant!

    SO excited....K
     
  17. Khalyal

    Khalyal Guest

    There is something about this that is very powerful, too.

    But honestly, as far as the death stuff being scary, I'm not sure we need to tame it down much. CFS is scary, isn't it? It sure scares me. :)
     
  18. Marylib

    Marylib Senior Member

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    Scary

    True. Scary ain't the half of it.....

    And I do love the idea of really scary posters. I am tired of all the people staring out windows and rubbing their temples at the computer. No offense to all the dear people here who go out to work every day. We are all sick, no matter what our level of activity.

    But yes, I like scary for a change.

    Hmmm. I wonder where Annette Whittemore got the info about ME/CFS'ers getting 20 years shaved on the life span? She said it at CFSAC. That would be interesting to know. That would make a scary poster.
     
  19. Countrygirl

    Countrygirl Senior Member

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    Hi Loldershaw

    I'm new here and don't know yet how to use quotes - apologies. You say that CFS is not on any death certificate. However, I can confirm that M.E. most certainly is. A friend of mine ( a local vicar ) was ill for 20 years and when he died M.E. was recorded on the certificate as the cause of death.
     
  20. parvofighter

    parvofighter Senior Member

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    Way to go Fresh Eyes!

    I hadn't posted on this string in a couple of days, and was blown over by your awesome graphics etc. Way to go!

    I love'em both:

    [​IMG]
    (a whole series of "living your life photos", with "you" cut out of the picture)

    and the simple slogan/motto:

    [​IMG][/IMG][/QUOTE]

    My only possible edit suggestion would be to reverse the webname from CFSout to outCFS, so the concept of "outing" CFS is drilled home.

    Bottom line tho - your visual work is inspired! Where can I buy T-shirts?:D
     

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