The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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MEAction Seattle Banner Poll- 2 Banners will be made

Discussion in 'Upcoming ME/CFS Events' started by Justin30, May 4, 2016.

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2 Banners are being made please pick 2 options

Poll closed May 11, 2016.
  1. #MillionsMissing. Left behind by HHS

    22.2%
  2. HISTORY WILL RECALL. YOU DID NOTHING AT ALL! ME/CFS CLINICAL TRIALS NOW!

    40.7%
  3. NIH and CDC. ME/CFS WON'T WAIT! ME/CFS MONEY NOW!

    11.1%
  4. PRETTY SPEECHES CANT SAVE LIVES! ME/CFS FUNDING NOW!

    3.7%
  5. STOP THE DEBILITATING SUFFERING --- M.E./CFS NEEDS FUNDING NOW !!!

    11.1%
  6. Stop the Harm! Start the Treatment! Start the Research!!!!

    25.9%
  7. BELIEVE IN M.E./CFS!!! IT'S A DISEASE NOT BIG FOOT!

    11.1%
  8. HHS: ME/CFS won't wait! Fund research now!

    11.1%
  9. HHS: Stop the harm! Start the ME/CFS research!

    3.7%
  10. #MillionsMissing - Don't let HHS abandonME/CFS!

    18.5%
  11. #MillionsMissing. We Need Treatment Now!

    7.4%
  12. HISTORY WILL RECALL. YOU DID NOTHING AT ALL! ME/CFS RESEARCH NOW!

    3.7%
Multiple votes are allowed.
  1. Justin30

    Justin30 Senior Member

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    Hello Everyone and Thank you for the Input.

    My Parents will be taking with them 2 Banners so *pick 2 Poll Options*

    ****please vote as soon as you can so that we can get these made****

    @aaron_c is my top pick but is to large for a banner for my parents to hold and for people to see...thank you.

    @JaimeS aaron_c's banner is very powerful like you noted is their anyway this could be made up for the protest? Just a thought.

    Thank you again everyone!
     
    Valentijn, rosie26 and Comet like this.
  2. aaron_c

    aaron_c Senior Member

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    I don't suppose they could hold a banner between them hung from a shower-rod-sized piece of wood? It would make a great photo-op for the paper! But I also voted for two of the above choices. I'm just thrilled that people are marching!
     
    rosie26 and Justin30 like this.
  3. Justin30

    Justin30 Senior Member

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    My parents are elderly and holding up a big banner would not be possible for both of them...I thought of that already....

    I am hoping MEAction can take hold of your suggestion and create this banner for one of the many protests....its very powerful

    Thanks
     
    Jennifer J, Valentijn and rosie26 like this.
  4. Comet

    Comet I'm Not Imaginary

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    Big thanks to your parents for doing this for us! :angel: I voted too.
     
    Jennifer J, rosie26 and Justin30 like this.
  5. *GG*

    *GG* senior member

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    Concord, NH
    I like this one:
    "HISTORY WILL RECALL. YOU DID NOTHING AT ALL! ME/CFS CLINICAL TRIALS NOW!"

    Does a clinical trial only happen with prescriptions? I didn't pick it because I wasn't sure.

    I don't like the use of the word money, how about Funding? I think the public might think we are money grubbing, lots of people are hurting financially right now!

    "NIH and CDC. ME/CFS WON'T WAIT! ME/CFS MONEY NOW!"

    Like this one:

    Stop the Harm! Start the Treatment! Start the Research!!!!"


    Seems like Research should be before treatment though? and perhaps before Treatment we could use the word "Real"? We do get treated for symptoms, but those are just band aids :(

    Just realizing you probably have space limitations and that is why the way some of these are worded?

    GG


     
    AndyPR, Jennifer J and Valentijn like this.
  6. JaimeS

    JaimeS Senior Member

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    Stop the Harm! Start the Treatment! Start the Research!!!!"

    I agree, @*GG* -- You wouldn't start the treatment before the research. :)

    Stop the harm, start the research is probably good on its own...

    -J
     
    AndyPR and Valentijn like this.
  7. aaron_c

    aaron_c Senior Member

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    I second that.
     
  8. Valentijn

    Valentijn Senior Member

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    I'd like to have NIH/CDC/HHS mentioned in at least one, and ME/CFS mentioned in at least one. Preferably mentioned in both, because it makes it clear who needs to be helped and who needs to do it.

    And I agree ... use "funding" in place of "money" on the relevant slogans.
     
    Jennifer J likes this.
  9. Justin30

    Justin30 Senior Member

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    Any suggestions.....?
     
  10. Valentijn

    Valentijn Senior Member

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    HHS: ME/CFS won't wait! Fund research now!
    HHS: Stop the harm! Start the ME/CFS research!
    #MillionsMissing - Don't let HHS abandon ME/CFS!
     
    aaron_c, JaimeS and Justin30 like this.
  11. Justin30

    Justin30 Senior Member

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    All good all added
     
    Valentijn likes this.
  12. Justin30

    Justin30 Senior Member

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    Thanks @Valentijn for your suggestions there are 3 more added to the poll.
     
  13. shannah

    shannah Senior Member

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    I personally want treatment NOW!!! There are treatments available that people are experimenting with and are having a measure of success with such as Ampligen, some antivirals, Rituxan. I think they should make these readily available to any of us who want them as soon as possible.

    They can continue funding research and adding to the 5,000 studies BUT it's over 30 years and long past time for TREATMENT! I don't think it's out of line at all to push for treatments!
     
    Justin30 likes this.
  14. shannah

    shannah Senior Member

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    I'd definitely like to see the word 'TREATMENT' somewhere in there.
     
    Justin30 likes this.
  15. JaimeS

    JaimeS Senior Member

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    It's just that so far, it's by chance that we've found things that work, as Edwards et al. pointed out recently.

    'Approve successful treatments' might be a good line. :)

    -J
     
    Justin30 and shannah like this.
  16. shannah

    shannah Senior Member

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    Something along those lines would be great @JaimeS
     
  17. JaimeS

    JaimeS Senior Member

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    HISTORY WILL RECALL. YOU DID NOTHING AT ALL! ME/CFS CLINICAL TRIALS NOW!

    I kind of think that this last bit might read, "ME/CFS RESEARCH NOW!" rather than clinical trials. Clinical trials require something to test, and while WE know there are already things to test in clinical trials for ME/CFS (rituximab? LDN?), it sounds like putting the cart before the horse to people who don't realize that we HAVE treatments that are successful in individuals but haven't been approved by the FDA...

    'research' rather than 'clinical trials' is still accurate, but doesn't have this feel.

    -J
     
    Valentijn likes this.
  18. Justin30

    Justin30 Senior Member

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    I will put it in. thanks for your input.

    The only problem I see with this is that MS for Example they dont know the exact cause especially RR MS but they have effective treatments.

    Another example is in HIV they know the virus but they do not know how ot get rid of it..

    Same for lupus, SS, etc.

    We are at a point where we just need options for treatment and a billion $s in research funds to make up for the mishandling of the disease.
     
    shannah likes this.
  19. Strawberry

    Strawberry Senior Member

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    I just heard that the University of Washington is doing a trial on making old dogs seem young and full of vigor again. They are using rapamycin. It seems I have heard that word here?

    UW cares more about YOUR DOG than MY ME/CFS.

    I wish I could go to the march. And strangely, I'm not sure I can find anyone to go FOR me. Too lazy???

    Is this an empty shoes event?
     
    *GG* likes this.
  20. JaimeS

    JaimeS Senior Member

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    So many things you can do even if you don't go, @Strawberry ...

    10 things you can do for #MillionsMissing with limited spoons
     

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