Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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poster ideas for stalls etc

Discussion in 'Action Alerts and Advocacy' started by dmbaken, Oct 22, 2011.

  1. dmbaken

    dmbaken

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    Hi,

    My family and another with are putting together a small stall for a local fair to raise money and awareness for ME (both families have members with ME). I'm looking for some ideas to make up some some posters. I'm sure others must have made some posters for similar situations. Can they share their ideas. Somebody may have already made up some posters which they could send in PDF (or like) format which others (like us) could then print off. It would be great to have such a collection in a resource center on a site like this (or is there already one?).

    Here are the ideas I have go so far:

    "Cancer Drug shown to cause significant improvement in people with ME/CFS (Fluge et al, 2011)"

    "People with ME/CFS found to have lower Quality of Life than people with other chronic conditions such as Rheumatoid Arthritis, ... (trying to find some more but can't find the paper)" [this one is to long].

    Thaks for you help.

    Don
     
  2. Nielk

    Nielk

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    If you contact Esther Esther, she might have some things because she has done a few protests and awareness jobs.
    If you wish you can you my drawing that I made- suffering with M.E. (Since it's an invisible disease, this gives you a feel of how the pain could look like.
    IMG_1402.jpg
    You can print it and blow it up if you wish.
     
  3. dmbaken

    dmbaken

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    Thank you Nielk
     
  4. justinreilly

    justinreilly Senior Member

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    There are some good quotes in the ME-ICC about immune and neurological pathology.
     
  5. ahimsa

    ahimsa Sick since 1990

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    Dr. Komaroff gave a presentation that had a graph which illustrates your last point -- the fact that ME/CFS patients function at a lower level than patients with many other serious illnesses. Would something like that work on a poster?

    Here's a description of the Komaroff presentation - http://www.masscfids.org/resource-library/3/229. Here's a link to the PDF with the slides - http://www.masscfids.org/pdf/Komaroff MassCFIDS.10.04.24.pdf

    I have no idea whether you'd need to get permission to print this and use it for a poster (not an expert on these things!) but thought I'd pass on this idea in case it helps.
     
  6. Nielk

    Nielk

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    When n my previous post, I directed you to EstherEsther - I meant RivkaRivka Sorry.
     
  7. Andrew

    Andrew Senior Member

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    Los Angeles, USA
    You could have a poster that says:

     
  8. ixchelkali

    ixchelkali Senior Member

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    Imagine the worst flu you ever had, and it never goes away. Over 1,000,000 need your support.

    Theres no cure yet, but theres hope.

    It (ME/CFS) is like some great constricting snake that denies its victims the final convulsion. Llewellyn King, The White House Chronicles reporter

    "A CFS patient feels every day significantly the same as an AIDS patient feels two months before death." Dr. Mark Loveless, AIDS researcher

    I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it. Dr. Nancy Klimas, ME/CFS and AIDS doctor
     
  9. November Girl

    November Girl Senior Member

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    Texas
    I just saw this today. ME%u00252BIS%2BJUST%2BFATIGUE%252C%2BRIGHT%2BWRONG.jpg
    Here's the accompanying text.
    --------
    Source: JB

    Message from Jane Colby
    25 October 2011

    ======

    ... 'ME IS JUST FATIGUE, RIGHT? WRONG'
    and:'Research showing ME is a physical disease'

    ======

    If you've been reading my tweets, you'll have seen that Mark has now placed the second poster in our awareness raising series prominently on our website.

    The message reads: 'ME is just fatigue, right? WRONG'.

    The striking photo features one of our members, tube-fed because she could not at that time eat for herself. We have all read so much nonsense about ME in the press this year. It is time to tell it like it really is and to forward this link far and wide.
    See the poster here: http://bit.ly/tt-wrong

    The good news is that, after she and her family declined graded exercise treatment and managed her illness carefully, avoiding any treatment 'programme', this little girl has come through the worst of the illness and grown into an independent-minded, academically gifted young woman with a strong sense of justice for children with ME.

    How many times do I hear a similar story of improvement through withdrawing from misguided if well-meant treatment? It confirms all that Dr Betty Dowsett, Dr Alan Franklin, Dr Nigel Speight and Byron Hyde MD have always said. And it reflects my personal experience of severe ME.

    RESEARCH SHOWING ME IS A PHYSICAL DISEASE

    On the reverse of our poster we have summarised the 2010 Dundee research into children's blood, showing evidence consistent with persistent viral infection. As most of you already know, Tymes Trust co-funded this research.

    The headline reads: 'Research showing ME is a physical disease'.
    We don't go along with the fashion among some doctors and researchers who tend to denigrate the very concept of a 'physical' disease. Such professionals prefer to emphasise instead that all disease, including ME, is a mixture of the physical and psychological. As I said when I was on the panel at the MEA Question Time in Huddersfield recently: 'Try telling that to someone with a broken leg.' No-one should let academic arguments obscure their common sense.

    It is vital that researchers continue providing evidence for the presence of viruses that are known to attack people with ME. And it's also vital that when such evidence has been published, we all continue to keep it at the forefront of the public's mind.
    Read it here: http://bit.ly/tt-phys

    Poster leaflets cost 3.35 for a pack of 10 inc p&p. You can display
    the poster or use it as an information leaflet. It can be folded either way - it arrives image side out for impact, or you can fold it the other way if you want to draw a doctor's attention to the research information.

    Please forward this message to anyone you think would like to know.

    All good wishes, and don't forget that if you need help, our ME-friendly Advice Line Team is on 0845 003 9002.

    Jane

    Jane Colby FRSA
    Executive Director
    The Young ME Sufferers Trust
    PO Box 4347, Stock, Essex, CM4 9TE
    www.tymestrust.org
    Tel: 0845 003 9002

    ======

    READ ALL PREVIOUS ALERTS AND SUBSCRIBE TO MY LIST AT www.tymestrust.org
    To unsubscribe, send an email via the website Contact Us form.

    Follow Jane on Twitter @JaneCColby
    or read her daily tweets at
    www.tymestrust.orgSee more
    Tymes Trust
    www.tymestrust.org
    http://bit.ly/tt-wrong
    www.tymestrust.org
    -------------------
    from http://niceguidelines.blogspot.com
     
    justinreilly likes this.
  10. justinreilly

    justinreilly Senior Member

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    great poster!! put it as a screensaver on my computer.
     
  11. dmbaken

    dmbaken

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    Hi,

    Thanks for your ideas.

    I believe that we need to advocate in many ways. Because of the limited energy and money we need to be smart about this.

    Wouldn't it be great if there was an online respository for advocacy ideas including how to do it, fundrasing ideas, and pdfs of posters that people have made up. That way we don't need to keep reinventing the wheel.

    I work in the cancer field and they do advocacy well. We can learn some lessons from them.

    Thanks again

    Don
     
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I did a spring festival. Got a banner. I can't remember exactly what it said. Something about "Only 15% have been diagnosed. Do you have it?"

    Tina
     
  13. dmbaken

    dmbaken

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    Hi Everyone,

    Thanks for your help. The fair has come and gone. We raised a little money for our local association, raised a little awareness of ME in our community, and the two families feel good about doing something to help. People are still recovering but big smiles come over their faces when I ask them about it.

    Others may want to try this too.

    I like my idea for a web respository for well made posters (mine just ened up being basic word docs). But no one has replied to that idea so maybe now is not the time.

    Thanks again

    Don
     
  14. justinreilly

    justinreilly Senior Member

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    That is an excellent idea. We do need something like this. I can't help now. Do you have time to spearhead this? are there some good cancer-advocacy materials to read that would help us?
     
  15. ixchelkali

    ixchelkali Senior Member

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    You didn't mention which country you're in, but if you're in the U.S., you could say:

    $27 BILLION annual cost to the U.S., $6 million dollars annual budget for research
     

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