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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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help "re-brand" CFS

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

  1. Lily

    Lily *Believe*

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    Silly, stupid name, scary, serious illness?
  2. _Kim_

    _Kim_ Guest

    I don't like the word: stupid. I like "lousy"
  3. fresh_eyes

    fresh_eyes happy to be here

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    OK y'all:

    Stupid?
    Lousy?
    or
    Silly?
    or
    Crappy?
    or
    Totally Absurd?
    or
    F*#%ed up?
    or...Other?
    :D

    Vote.
  4. fresh_eyes

    fresh_eyes happy to be here

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    Really taking to heart everybody's concerns about the "contagious" word, but still wanting to do something with the public health threat, I put this together. I feel kind of fearmonger-y, but at the same time, it's TRUE! And, honestly, people should be scared IMO. Feedback, please.

    [​IMG][/IMG]

    ps Wanted to mention also that I hope not too many people are having trouble viewing these big images. I tried, but they're resized about as small as they can go & still be easy to read & view.

    Taking a break now, feeling a bit crashy.
  5. Koan

    Koan Be the change.

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    I think this is great! I love the use of the red cross with bullet holes! You really are extremely talented!

    I guess we would want just a tiny bit more information in case the answer is no. If the answer is no, it could lead to even greater dismissal of our concerns. BUT, if, as we all suppose, the answer is yes...

    You really are fantastically talented!

    I don't know why you would need to take a break given all you have been doing is functioning as a full service PR Firm with in house Graphic design?

    Please rest! Please!

    We'll still be here.

    :eek:
  6. fresh_eyes

    fresh_eyes happy to be here

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    Hey, have not managed to break away yet - but wanted to say before naptime that those aren't bullet holes, it's a picture of XMRV cells. Doesn't communicate, I'm thinking? OK, nighty night for real this time.
  7. Koan

    Koan Be the change.

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    I have a whiffle bat, and I'm not afraid to use it! REST!

    I really like the fact that they are XMRV cells but that at first glance they look like bullet holes in the blood supply!!!

    How fantastic is that! It communicates more than you thing!

    You're a geeneeus!

    Now, slowly back away from the computer...

    I warned you!

    WHOMPH!
  8. Martlet

    Martlet Senior Member

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    Near St Louis, MO

    FWIW, I didn't see bullet holes but viral-y cells, and the image communicated the message to me very powerfully. BUT, just to be sure I don't have viruses on the brain (well, make of that what you will) I just asked my most unimaginative, un-artistic, non-medical and infinitely practical husband what he saw ... without him seeing the words underneath.

    "Red cross with cells in it," he said.

    I think that one is brilliant, Fresh-eyes!!!

    Trish
  9. fresh_eyes

    fresh_eyes happy to be here

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    @Trish - Yay! He got it!

    I'm loving the instant field-testing on all these ideas! Thanks, all. More feedback, please! So far the frontrunners seem to be
    1)"Lose Their Lives"
    2)"CFS Sucks"
    and maybe 3)"Red Cross"

    Yes? I'm thinking it might be good to limit ourselves to the very, very best ones - keep the message focused, ya know.
  10. gracenote

    gracenote All shall be well . . .

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    Can we use this symbol?

    fresh eyes,

    I think your red cross with the XMRV virus is brilliant. I got it right away. Did I say brilliant?

    But . . . I hate to say this . . . maybe better now than too late . . . The Red Cross may not allow us to use a symbol that is representative of them. I would expect you to get a "cease and desist" letter from their lawyers immediately. Maybe one of our forum legal minds can sort this out. This is my fear, anyway.

    The one idea I like is, if we were to use this symbol, to come out loud and strong until told to stop.

    Anybody else think this might be a problem?
  11. Koan

    Koan Be the change.

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    I have just one more comment about "Let's find out" Bear with me cuz the fog is thick but I remember a couple of things from a time before the fog rolled in. :p

    "Let's find out." asks for the reader's cooperation and begs the answer, "no thanks". People look at copy and have a little dialogue in their head. We don't want to set in motion a dialogue we don't control :cool:

    People respond better to direct uncomplicated instructions. "Find Out" Tells them exactly what to do. Once the idea is planted and they are hooked, they should be directed to a website, the next pg. of the brochure, etc., where they find compelling, scary but true, reasons why research is needed.

    This next step should trigger anxiety and self interest: "Many viruses have been implicated in CFS including the recently discovered retro-virus XMRV which may be linked to prostate cancer... "

    "Find Out" has urgency. We don't actually launch into answers which cannot be substantiated but, rather, the alarming situation which requires action - money for research.

    First stage: Cut through clutter - stop people, hook them, engage curiosity/arousal

    Second stage: why they should care - self interest - prolong arousal

    Third stage is what they should do now that they are hooked and cooked :D
  12. Koan

    Koan Be the change.

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    This is very true. I think this would probably be actionable - not that I know anything about law. But, the Logo is sacrosanct for every institution and especially so for the Red Cross. When I saw it as a sign with bullet holes, it was less a Red Cross logo and more abstract. Still wouldn't have got past them, though.

    A bag of blood would be less strong graphically but get across the same message. Maybe the letters that comprise blood could be dripping from the bag... :D
  13. fresh_eyes

    fresh_eyes happy to be here

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    Re using the Red Cross logo, I think as a form of protest it's probably protected speech, isn't it?
  14. fresh_eyes

    fresh_eyes happy to be here

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    Also, Koan, my concern with "Find out" is that - and somebody said this, Mark maybe? - they might try to find out via Wikipedia or something and 'find out', Oh, it's nothing! We only want them to find out from US! :D And I want it to convey that the answers are not yet necessarily available but it's very important that they be found.
  15. Koan

    Koan Be the change.

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    Yeah, what you said.

    We have to provide the answer right there or a very swift route to the answer.

    But, you know, even Wikipedia cannot say it is not contagious. No-one can say, categorically, that it isn't contagious or a growing problem or something that can happen to anyone.

    One thing I know for sure is that we must stop saying that the bull isn't true, which just keeps putting out the same message over and over again, and start saying only what is.

    And, yeah, what you said. :D

    ETA: "let us" is kinda like "come with us and do something" and it sounds like work and they won't want to do that.
  16. blackbird

    blackbird caged.

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    As has been said a few times in this thread already, naming is a big problem. The ideas I've been working on don't focus on the name though, so shouldn't suffer from that confusion.

    I suppose it may be a bit early, and without some degree of recognition in the population as a whole it may not work.


    I've focused on the idea of 'US'.

    US being an inclusive group of people affected by ME/CFS/CFIDS, and those affected by other illnesses and misdiagnosed, plus friends family and colleagues. The idea being to make the advocacy group as big as it can possibly be.
    (In the same way that CFS is a problem here in the UK, I realise that US could be troublesome the other side of the pond).

    The US in this case stands for 'Umbrella Syndrome'.

    An initial idea on how this could be used:


    -----------------------------

    [​IMG]



    (the above could be a teaser, followed up by similar, but with additional text.
    Alternatives could be between 1 and 3 of the following:


    ME sufferers
    CFS sufferers
    CFIDS sufferers

    Mothers of sufferers
    Fathers, brothers, sisters etc.
    Friends of sufferers

    Employers losing staff to ME

    Future generations

    Those unfairly denied help by insurers

    Psychiatrists tarred with the same brush as their CBT/GET peddling medieval colleagues. (I know that won't fly, I just liked it)

    Your children in the future
    Their children.......


    I also wanted to include those misdiagnosed and suffering with something else.
    Would need wording sorting out, but I've read of mitochondria being misdiagnosed for years, and there must be thousands of others caught in the umbrella and not getting treated, when their condition may have nothing to do with ME/CFS/CFIDS.
    So:
    Wrongly diagnosed Lyme disease sufferers
    Wrongly diagnosed mitochondria sufferers


    Could soldiers and PTSD be included?


    -----------------------------


    Other ideas are just phrases that could be included in some way:

    Are you one of US?
    Are you with US?
    Help US

    and linking to the missing people in photos:
    One of US is missing
    One of our team is missing

    (As an aside, for the group pictures with missing people, how about parties. Birthday's Christmas etc?)

    With US as the core of this, it gives scope to use WE, ME, THEM, THEY as well.





    My graphics abilities are are a bit iffy, so what I've done are just a basic idea.
    Here's the logo:

    [​IMG]

    (Think the text might be a little small though)
  17. fresh_eyes

    fresh_eyes happy to be here

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    Hi blackbird. I like your idea here. Us. Me (and M.E.)/Us. (And U.S. - although, ack, US, as in USA?) It's reminding me of Levi's "Unexplained Illness" thread, with the Joint Resolution - have you read it? There's definitely a need to take awareness beyond CFS, as there is clearly a lot of unexplained illness going on, and much of it is being disregarded.

    Soldiers with Gulf War Syndrome would certainly be part of that (Nancy Klimas is looking at XMRV in that, as you probably know).

    Somewhere on here George posted a summary of illnesses once thought to be psychosomatic, now organic, a la "100 yrs ago we thought....50 yrs ago we thought..." MS, Ulcers, Narcolepsy. That seems like the strongest case to be made that in the future we'll find out all these Unexplained Illnesses are organic.

    So, I see this as a separate thing from the CFS/OUT thing, yes? It's much broader. Seems important - though it might be a challenge to implement a whole new name for that group of illnesses. (ETA: It occurs to me that possibly just "Unexplained Illnesses" could be the name, still using the US and the umbrella motif?)
  18. gracenote

    gracenote All shall be well . . .

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    umbrella syndrome

    Blackbird,

    Very intriguing ideas. I really like your angle.

    One thought. Instead of a second question "Who are we?" I'm wondering if it would be stronger as "Are you with us?" and then "Who we are."

    All this creativity is amazing. And I get to sit back and add my two cents by far the easiest job! :D
  19. blackbird

    blackbird caged.

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    Only the other day, I was thinking how a famous old quote/poem could be reworded:

    First they came for the communists, and I did not speak outbecause I was not a communist;
    Then they came for the trade unionists, and I did not speak outbecause I was not a trade unionist;
    Then they came for the Jews, and I did not speak outbecause I was not a Jew;
    Then they came for meand there was no one left to speak out for me.


    I got this far:

    First they said was all in the mind
    Then they said was all in the mind
    Then they said was all in the mind
    And now there is M.E. and they say it's all in my mind

    and thought that as an ad campaign, you could add a question at the end with 'You' in it. Though a link to US might work.

    I hadn't worked out what to put in as the most known hardest hitting illnesses of the past.
    Obviously the 'was all in the mind' bit would need changing to hysteria, or whatever was applicable to the chosen conditions.
  20. Martlet

    Martlet Senior Member

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    I just looked it up. Seems it is international law that prohibits its use, and the federal government upholds that international prohibition.

    That's a shame. Such a powerful image. :(

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