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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Design a Brochure

Discussion in 'Action Alerts and Advocacy' started by starryeyes, Dec 16, 2009.

  1. fresh_eyes

    fresh_eyes happy to be here

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    OK folks, I have uploaded a rough draft for a quarter-page "Info Card", shown here larger than life-size. Have a look & give feedback, please! (FYI I created the image, in the "Re-Brand" thread, but I didn't write the text, it was put together collaboratively on this thread - I did fine-tune it, though)
    Front:
    [​IMG]
     
  2. gracenote

    gracenote All shall be well . . .

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    WOW!

    That image, along with the brief text, makes a powerful punch. I would love to see a series of these with different types of people missing a mother, a child (from the school grounds), maybe a construction worker, etc.

    Great job!

    It is so much fun being a part of such a creative, passionate, activated group despite (or maybe because of) our disease. I'm so proud of us!
     
  3. fresh_eyes

    fresh_eyes happy to be here

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    Thanks, gracenote! The back side was supposed to be there too, somehow it disappeared. I'll try again:
    [​IMG]

    ps Sorry these are so huge! I don't know how to make them a bit smaller - anybody??
     
  4. gracenote

    gracenote All shall be well . . .

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    I only wish . . .

    Nice, tight language on this side. I only wish the web address could be something like www.CFStakeslives.com so that it would be memorable and tie into the slogan. This is exciting!

    www.CFStakeslives.com
     
  5. fresh_eyes

    fresh_eyes happy to be here

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    I know, right? Or .org?
    That link is to the Canadian Consensus definition - which is great, but not easy to take in.
    We *could* register an address like the above and have it forward to another page - but what??? The CAA?
     
  6. Tammie

    Tammie Senior Member

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    I definitely like it - turned out really wonderful.....only one very tiny little correction - I think there should be a comma after chemotherapy

    thank you again for doing this everyone who contributed - I am really excited about it
     
  7. shrewsbury

    shrewsbury member

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    FANTASTIC WORK y'all!



    The MESA site is good, and like that you've put the one that goes right to the Canadian docs. But you're right, it is long and not so easy to remember.

    There is the Canadian group that initiated the documents and got the Overviews done for ease of comprehension, and their address is shorter http://www.mefmaction.net/

    If you want to stay American, the CAA's address is short and easy to remember http://www.cfids.org/

    (oh how interesting - in looking for the CAA address, I found a doctor has scooped the same address as the CAA but .com - no juice to look into it tonight though)
     
  8. Tammie

    Tammie Senior Member

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    I think that the Canadian definition is good - it may be long, but if people actually take the time to go there, they may be willling to look thru it all, and even if they aren't - just seeing the length coudl have an impact (if CFS were in our heads, the definition could be substantially shorter)

    and anyway, the brochure serves the purpose of giving them a brief overview if that's all they are looking for

    plus, the Canadian definition is really the most accurate by far, the CAA has some very good info, but they also have some stuff that has been debated on here (& for good reasons)
     
  9. gracenote

    gracenote All shall be well . . .

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    My thought. I have another thought! Or two! Or three!

    Even www.cfids.org is not quite right, in my opinion. The front of the brochure says CFS. And then we tell them to go to something with CFIDS. That sounds like a disconnect to me for the audience we're trying to reach.

    The brochure is purposely simple and it would be great if it could lead to simple sources including patient stories. Very basic stuff. As I can't be part of the solution here, it's easy for me to have ideas that I can't carry out . . . but . . . could we set up a very basic web site using CFStakeslives.org or .com, with a little bit of content and with links to the CAA and the Canadian group, and even Phoenix Rising?

    Could we? And by "we" I mean someone other than me. :D :D :D

    I just can't get more involved except to cheer everybody on and come up with impossibly big ideas. :Retro smile:
     
  10. starryeyes

    starryeyes Senior Member

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    That is fantastic Fresh Eyes! I love it. Thank you so much.

    I like the idea of putting the website addy that is easier to remember but this one: http://www.mefmaction.net/ doesn't have the Canadian Definition on the first page... I don't think people will feel like navigating it... it's confusing and the first words on it that jumped out at me are "Donate Now" which is off-putting.

    I like gracenote's name: CFStakeslives.org or .com and have that take people to the Canadian Definition page but I'm not sure how that works. Would they get lost or find it a hassle?

    Also, how are we going to get this Info-card printed and distributed?
     
  11. Advocate

    Advocate Senior Member

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    Thanks, Fresheyes. A relative sent me a brochure from the city of Asheville, and it seems there are a lot of artists there. We're lucky to have a North Carolina artist on this list.

    Yes, I remember Act Up, and have often wished that we had a similar organization. People with CFS could gather in front of a legislature, stand there, and simply wait until orthostatic intolerance takes them down, one by one, thus slowing the legislators as they hurry off to their assignations. (smiley)

    The brochure looks great! How big will it be? I know there was some discussion of that, way back. I'm glad you are taking things into your own hands and not waiting for some organization to do it.
     
  12. Tammie

    Tammie Senior Member

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    any news about printing this? it would be a really, really, really cool birthday present to be able to print these out....hint, hint.....yeah, I know I am being impatient and it wasn't even my idea to start with and I do honestly totally get that those of us who have been working on this are sick and everything takes forever to get done as a result......I am mostly writing just to keep it bumped, but if I am putting too much pressure on people, I am sorry......despite my impatience I do understand......but can ya tell I am excited about this?

    I plan to have them in my car, in my purse, etc and to possibly bring them to my Dr's offices (for the patients there, not for the Drs) and to the library, etc....anywhere they will let me put them that might get the message across to more people
     
  13. Tammie

    Tammie Senior Member

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    I was looking at this again, and had one more minor suggestion.....since it already mentions pain in the first paragraph, and since there are so many other symptoms, as well, I was thinking that in the list (that starts with orthostatic intolerance) instead of saying pain again, maybe we could put "neurological & cognitive issues" -or "neurological & cognitive" and then a synonym for issues since the word issues is used rt after that.....sorry I am not coming up with any other word at the moment bc my own cognitive issues are kicking in rt now : )

    or if not that than maybe sleep issues, but I think that sleep tends to fall into the same easily dismissed category as fatigue

    .....anyway, like I said, it's just a thought - it kind of seems like repeating ourselves when there are so many disabling symptoms to choose from sort of weakens our case (not sure if that makes sense, but it kind of seems like if we put too much emphasis on it it's not as believable, or like it looks like we don't really have that much wrong so we have to repeat something...and the neuro and cognitive issues ARE a big part of this illness

    anyway, if I am being too picky, feel free to ignore this
     
  14. starryeyes

    starryeyes Senior Member

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    Tammie,

    I think that's a good idea but I have to read what you wrote again when my fog clears. I don't know if we can get these printed out. We should try asking some CFS orgs.
     
  15. Tammie

    Tammie Senior Member

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    I thought that fresh eyes had a way to get these printed?

    and I so understand about the fog - most definitely no need to hurry - re read it whenever you feel clearer

    .....I have been having a lot more fog lately than I used to and as a result I am way behind on emails and other online stuff - I do what I can during the clear moments and hope that no one will get upset that it is taking me so long to get back to them - fortunately many are in the same boat, so they understand, too
     
  16. Tammie

    Tammie Senior Member

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    just thought I'd bump this up so it doesn't get forgotten......no pressure at all to hurry thigns along......just don't want it to get lost way down the board
     
  17. fresh_eyes

    fresh_eyes happy to be here

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    Hey y'all, sorry I haven't been around much. Hi Teej, especially! :hug::hug::hug: And thanks to Tammie for bumping this thread. :hug:

    I *don't* have any special way to get stuff printed, though printing is fairly affordable (say, $150 for 2000, ish) - it's getting them distributed that is the kicker. I can post the files, though, if folks would like to download & print themselves, or print at kinkos or something? Or if anyone can/wants to take on distribution. Let me know if that's of interest and I will upload.

    Take care all. Now back to my :headache::sofa:
     
  18. Tammie

    Tammie Senior Member

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    fresh eyes, that is definitely of interest to me.....one thing though is that I had made one last suggestion for changing something on the brochure and Teej thoguht it soudned good, but was going to look it over again when less foggy.....I don't think that has happened yet, so if you could hold off until that is done, it would be great

    glad to see you back : )
     
  19. starryeyes

    starryeyes Senior Member

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    Great to see you fresh eyes! :hug: It would be great if you could make a file for the info card and other ad stuff you designed.

    Tammie- thank you for bumping this up and contributing to it. :Retro smile:

    tee
     
  20. cinderkeys

    cinderkeys

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    I've spent some time as a professional copyeditor. If you like, I can proofread the text for you before you print it. E-mail it to susan (at) cinderbridge (dot) com.

    This is the kind of thing where you really don't want typos, capitalization errors, etc. :)
     

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