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Information leaflet on ME/CFS and children/young people either for patients or for doctors?

Discussion in 'Resources' started by Tom Kindlon, Sep 4, 2023.

  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    2,202
    Information leaflet on ME/CFS and children/young people either for patients or for doctors?

    I'm involved in organising a mail-out to GPs. Most of the material has been selected.

    I was thinking it would be good to have a specific item on children/young people to remind the doctors that children/young people can become ill with ME/CFS. So it could either be material educating doctors about ME/CFS and children/young people or alternatively it could be an item that a GP could give a young patient and/or their parent/guardian.

    It could be from any country in the world once it's in the English.

    Unfortunately currently we only have space (as the price for postage jumps above 100g) for a single sheet (either single sided or double sided) on the topic though potentially we could use a longer item and take something out or alternatively use it (a longer item) in another way/at another stage.

    Any suggestions welcomed. Feel free to contact me directly if you prefer e.g. by private message. Thanks.
     
    Last edited: Sep 4, 2023
    Kitty, MEMarge, alktipping and 5 others like this.
  2. Ash

    Ash Senior Member (Voting Rights)

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    I can never keep track of information, so I’m afraid I can’t help.

    So instead here to say thanks for doing this! Protecting children more important than anything ethically. Also I think is where the wrong full ideas take hold and it would be practical to weed out at this early stage.


    I am excited to see people’s suggestions!
     
    Last edited: Sep 4, 2023
    bobbler, Kitty, MEMarge and 5 others like this.
  3. Evergreen

    Evergreen Senior Member (Voting Rights)

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    Ash, Kitty, MEMarge and 2 others like this.
  4. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    I think you're the winner.

    I did get a number of suggestions elsewhere, mainly in reply to my Facebook post:

    But I think I will go it yours.

    I have wanted to send out the whole primer but that is very expensive.
    The only other option that would keep within our budget would be to do half or so of the country with a mail-out that includes the paediatric primer and do the other half in the year or 2. But the primer gets older and hence less attractive to readers as time goes on.

    So I've done up a draft attached with the abstract on one side and the diagnostic worksheet on the other along with links and QR codes.

    Thanks again.

    By the way, if anyone knows how to make a PDF from a Word document without the loss in resolution that you see in this file, I'd be interested in help in this matter. I might send to printers the Word document instead.
     

    Attached Files:

    Last edited: Sep 20, 2023
    alktipping, Ash, Kitty and 2 others like this.
  5. Evergreen

    Evergreen Senior Member (Voting Rights)

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    248
    Woo hoo! I think what you went with looks great, and you really made it tempting to look into it more.

    I'd probably have left out the "excellent", just because some will baulk at patients daring to judge the value of articles, but it really is pretty excellent isn't it?

    Hope someone was able to help with the resolution question. I've never had that when I've converted from Word to PDF but haven't done it in a while.

    Now let's hope people read it! You've certainly presented it in a way that maximises the chances of that.
     
    alktipping, Ash, Kitty and 1 other person like this.
  6. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Thanks. I will think about removing the “excellent”: there still is time. You may be right. I suppose including the extract implicitly means we are recommending it/think it’s good.
     
    Last edited: Sep 26, 2023
    alktipping, Ash, Amw66 and 1 other person like this.
  7. Kitty

    Kitty Senior Member (Voting Rights)

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    Location:
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    It depends what system you're using—I think it's quite easy if you use the Adobe printer on a Windows machine, as you can alter the settings in the document properties. It's a while since I used Windows, but the Adobe website might have better info.

    If you're on a Mac, rather than using the traditional print function to create PDFs, do Save As instead. It only offers two quality options, but it'd be worth trying a single page to see if it's any better.

    As for the whole worksheet—if it's online, it might be worth adding a QR code? I don't know how often people use them, but if they're interested enough to read to the end of the handout, they might follow the link.
     
    alktipping, Ash and Tom Kindlon like this.
  8. Evergreen

    Evergreen Senior Member (Voting Rights)

    Messages:
    248
    Yeah, that's where I'm coming from. I think GPs would be more likely to read it without the "excellent".

    They won't read it because patients think it's good, indeed, that will be off-putting to some/many. The ones who read it will read it because at a glance they can see that it's a decent journal, the authors are from well-regarded institutions and multiple jurisdictions, it's brief, and because the diagnostic worksheet is fun-size and photocopiable...and because there are so few good resources for paediatric ME/CFS. I think you've made it really enticing with the brevity, spacing, QR codes and links.
     
    alktipping, Ash, Amw66 and 1 other person like this.
  9. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Thanks. It's on Windows. I don't have a Adobe licence.
    I was printing to PDF. I have now done as you suggested and simply saved as PDF (see attached) though there are still seems to be a loss of quality compared to the Word document.
    Thanks for the suggestion about a QR code: I had already included that.
     

    Attached Files:

    alktipping and Amw66 like this.
  10. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,202
    My sister, Ali Deegan, who has design qualifications converted the paper into Word.
    This has enabled me a much clearer PDF (see attached) :)
     
  11. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,202
    Disappointingly we didn't get to use it in the end.

    I expected the information bundle to weigh 90 g but what came back from the printers weighed 106 g. They didn't seem to use the 80gsm paper for some of the order.

    So one page had to go to keep the weight at 100 g, the postage limit, and this weighed 6g.

    So we now have 3300 copies of this printout!

    Hopefully we will get to do another mail-out in the next year or 2 and use them up.
     
    Last edited: Nov 17, 2023
    bobbler, Sean, Comet and 1 other person like this.

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