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Design a Brochure

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

  1. gracenote

    gracenote All shall be well . . .

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    everybody has such great ideas

    This is turning out great, teejkay. Just a thought on the examples.

    Quick thought. People with breast cancer are not necessarily disabled. Often it's the treatment that makes them feel ill unless it has metastasized. I can't help you with a better example at the moment or a better way of using cancer which is a good reference.

    Tammie: I love your bumper sticker. Great.
    Re: my earlier post. I think the postcard size might still be useful but not instead of a brochure.
     
  2. starryeyes

    starryeyes Senior Member

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    Thanks for your feedback gracenote. I thought that by putting breast cancer in there, he meant when they're dealing with the treatments and I think given the context, that that's how most people will take it.

    Did you notice who said this?

    ;) lol
     
  3. gracenote

    gracenote All shall be well . . .

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    here's a quote

    Here's what I found.

    Here's from the CDC's CFS TOOLKIT FOR HEALTH CARE PROFESSIONALS:

    I think it would be good to use this one. No one would question this as it's from the CDC's own website.

    "This easy-to-use CFS Toolkit (also available on the CDC's CFS Website) includes the most up-to-date information on CFS clinical care."
     
  4. Tammie

    Tammie Senior Member

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    I am happy that my idea (not all disabilities...) might actually help :)

    so far the rest of this looks good to me.....I think that the part referring to breast cancer could maybe be changed to say "undergoing chemo" (or going through chemo or something like that.....from my understanding the treatment is the disabling part - though I could be wrong about that)

    also Gracenote suggested that we use the CDC's quote re how disabling CFS is.....even though it is a good quote, I personally would hesitate to use anything that comes from the CDC, for a few reasons:

    -I don't want people to decide they want to know more about CFS and then, having seen a quote from the CDC on our brochure, think that the CDC is a good source of CFS info (as we know, they have screwed with us, with the name, and with the definition so much that they have seriously harmed us, and the vast majority of info that has been on their site re CFS is NOT accurate and NOT what we want people to believe),

    -and there was a recent AP article discussing a lack of ethics in the CDC - they are starting to get a bad rep with more and more people (so quoting them might not actually be viewed as reputable),

    -and quite honestly, they just leave such a bad taste in my mouth due to all they have done to us I do not want to put anything out there that might make it appear that we appreciate their mess (or worse that we actually agree with them)

    also, as far as the part, "In CFS the body's cells do not produce
    enough energy which causes a myriad
    of symptoms, many of which are
    crippling and disabling." I like how my words were changed - actually I really appreciate it, bc I couldn't come up with somethign short enough.....but I do think that I would put "to function properly" after "enough energy".....I say that bc when most people hear the word energy, they immediately think about normal tiredness, and even though this does explain that it causes other symptoms, I still think there needs to be a little more emphasis on the fact that this is not a normal loss of energy.....just my thoughts, though, so if others don't agree, I can accept that

     
  5. gracenote

    gracenote All shall be well . . .

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    good quote and doesn't need references

    Tammie,

    I appreciate your concerns about the CDC. However, we could use the following quote as is without mentioning the CDC or Reeves. It's what Klimas was referring to, and when I did a google search, this exact language was being used over and over by all kinds of CFS supportive groups.

    Anyway, these are just my thoughts.
     
  6. starryeyes

    starryeyes Senior Member

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    Thank you gracenote. I like Klimas's best for this brochure because it's more concise and simple. This is for handing out to Joe the Plumber and we want it to be a fast, easy read and not take up much space.

    Good points about the CDC Tammie. I think Klimas's quote looks better there too.

    Good point and I agree with you. I changed it. :)

    Thank you both very much for your input and if anyone else has any I'd be happy to look at it. I'm really happy with it. Now does anyone have a suggestion for distribution to patients? Maybe the website that fresh eyes is making?
     
  7. fresh_eyes

    fresh_eyes happy to be here

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    re distribution - I can *definitely* host the brochure/card online for people to download. I can also make that file print-ready, so that it could be taken to Kinkos & printed on card stock, to make it more official-looking. If it's postcard size (1/4 sheet) it would be fairly inexpensive to have printed. That does really limit the amount of text, but I think it's plenty to get the point across to a stranger.
     
  8. Tammie

    Tammie Senior Member

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    I am truly not trying to be picky here, but one last suggestion.....

    What about, "Respected CFS researcher, Dr. Klimas has pointed to studies showing that CFS can be as disabling as.........")....or even just "studies show CFS can be as disabling as........" as was suggested previously (I think by gracenotes)

    I do think it is good to have some references to back things up, and like I said before if everyone else still wants to mention the CDC, I can accept that (albiet reluctantly ;))....I just thought I'd throw out this last suggestion and see what you think

    overall, I do think that everyone has come up with a really good brochure....lots of good ideas from all
     
  9. starryeyes

    starryeyes Senior Member

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    That's awesome fresh eyes! You're hired. :)

    I do think we could take this paragraph out if necessary to make it fit on a 1/4 sheet:

    We'll know when we go to try to print it. We could also have 2 one with the paragraph and one without but we'll see how it goes first.

    Tammie, I think Klimas's quote is better anyway. I did change it to that. I like the idea of putting "Studies show". Thank you and feel free to state your opinions anytime. :) You really helped make it much better.

    Thank you everyone for your suggestions. I hope this helps people. Next we need to work on a pamphlet.
     
  10. Tammie

    Tammie Senior Member

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    teej

    I am glad to help.....was worried that I was maybe getting a bit annoying or picky or something with my suggestions, so I am happy to know that is not the case....I like the way that the brochure is now and am so glad that you had the idea to do this
     
  11. Andrew

    Andrew Senior Member

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    I thought I could not do this, but I just checked the site and found

     
  12. Victoria

    Victoria Senior Member

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    Rant all you wish, Dr Yes,

    I always found that putting it into words released alot of anger & frustration.

    May not help the situation, but writing it down does release some steam from the boiling kettle.

    I can't believe how cool, calm & collected you were in that terrible situation with those ignorant, insensitive, uneducated fools.

    My heart goes out to you (& others) facing such negative, unhelpful comments from supposed health professionals & carers.

    (sorry, I haven't got any helpful hints for the brochure).
     
  13. Countrygirl

    Countrygirl Senior Member

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    Brochures

    Hi folks,

    I wish we had those brochures available now! Last night I had a phone call from someone who told me that she has had severe M.E. for about 20 years. She is just about completely bedbound, her legs are contracted and her young carer (her son) has left home, so she is alone. Her G.P. gives her no support and keeps away. She has been receiving daily care from Social Services three times a day.

    Things are now changing for her. The person at the top of the Social Service ladder (not sure who this is yet) has informed her that the care is to be partly/completely (?) removed. The reason given: patient is receiving no treatment or GP support so patient cannot possibly be ill and therefore care is to be removed! :mad: We need those brochures urgently!

    Just thought I'd share the above ....makes me :mad: ...and very sad. Must go and do battle with the aid of the phone.....and some 'undercover' contacts who can pull some strings...hopefully... :)
     
  14. joyscobby

    joyscobby Senior Member

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  15. Tammie

    Tammie Senior Member

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    I meant to say this sooner, but thank you for being willing to do this!! I am really eager to get these printed....want to use them for people who make bad comments, people who genuinely want to know more, and possibly even to see about getting some of my Drs to put them in their waiting rooms for other patients to learn from....and anywhere else (library, church, grocery store bulletin board, etc)
     
  16. starryeyes

    starryeyes Senior Member

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    Hi Cg,

    That is a tragic situation and my prayers go out to your friend. I don't know if these Info Cards we're making would help her though. These are designed to give to strangers on the street for the most part to justify Handicap Parking or things like that. It would be great if an Info Card like this could help her situation but it sounds like they're only willing to take a doctor's word for her disability.

    Can you or your friend contact ME groups in the UK and see if they can help her? I'm not sure which ME group is the best but you can try asking others from the UK that are here.

    That is such a sad situation. It's really upsetting to hear that's happening to your friend. My heart goes out to her.

    tee
     
  17. Tammie

    Tammie Senior Member

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    Cg, that is really a sad situation.....so sorry to hear about it and I so wish I could suggest something that might help....will be praying, though

    why is it that the people behind so much of treatment protocol just don't get it?

    We are not sick bc we are depressed - we are (some of us) depressed bc we are sick

    We don't fail to go to the Dr bc we are suddenly healthy - we have (some of us) regressed so far that we are too sick to get there (and it's not exactly as if it does so much good if we manage to get there anyway!)

    and in the US, if you are sick enough to need disability, you are probably too sick to be able to go thru the application process to prove it

    it's all bassackwards!
     
  18. Countrygirl

    Countrygirl Senior Member

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    From the M.E. underground rescue service

    Hi teej and Tammie,

    Thank you for your encouraging comments. It really helps to know we are among friends here. :Retro smile:

    My home phone number appears to be public property and I get calls from all over the country from people who are having a very difficult time getting help from any official source, including parents whose children have been taken from them and locked in psych. wards. Some sympathetic docs also occasionally telephone to ask for advice. I have been working in league with a sympathetic retired consultant who lived hundred of miles away to spirit children out of psych wards ;) and have other means to help folk who are refused medical help or who have their benefits removed. ;) When this battle for recognition is over, we will have have some intersting stories to tell. :Retro smile: It can't come soon enough!

    Warmest wishes,
    C.G.
     
  19. Advocate

    Advocate Senior Member

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    At some point there was a discussion of these things, but I can't find it now. Anyway, one of the phrases or logos under consideration was a two-word phrase, "CFS/Out," or something like that. I never understood exactly the meaning of those two words, used together, but couldn't put my finger on my problem with it.

    Then somewhere I saw two words, used together, that I liked a lot. "Solve CFS." I think those two words simultaneously suggest that the etiology is unknown, and they also issue a challenge to anyone who might think the etiology is known (psychogenic).

    I was surprised to find a website that uses those two words: http://solvecfs.org/ I was even more surprised to find a SolveCFS Campaign, run by the CFIDS Association of America. I have been critical of the CAA in the past, for their seeming support of the psychogenic view, but here is something good that they have done.

    Does their use of the phrase mean that no one can use (or would want to use) "Solve CFS" independently, if they want to? Surely the slogan is not copyrighted.

    Has anyone here made any progress on a brochure, etc.? I didn't weigh in on it much at the time, have had some additional thoughts if anyone is still interested.
     
  20. fresh_eyes

    fresh_eyes happy to be here

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    Hi Advocate. Just FYI, that was my idea w/ "CFS OUT", and the idea was as a sort of Act Up (remember them?) for CFS - CFS out of the closet, speaking out, etc. To mobilize those affected by the disease. It's on the "Re-Brand CFS" thread. (I've been in a down spell since then, so it's been on the back burner.)

    So that's pretty different than "Solve CFS", which a good slogan (and of course an extremely important goal) but is not something we PWCs are *personally* going to do - it's something we're trying to get scientists to do. I don't know how the CAA would feel about others using that slogan, you might ask them. And FWIW I am not that impressed with the materials they've produced under that slogan (for example, the "patient stories" on the SolveCFS site turn out to be "composite characters", not genuine stories).

    I'm open to discussion on all this, though, and appreciate your input.

    ETA Also brochure text has been decided - it's in the first post in this thread.
     

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