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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May 12 Awareness Day activity in (or near?) Portland, OR

Discussion in 'Advocacy Projects' started by ahimsa, Apr 12, 2016.

  1. ahimsa

    ahimsa Sick since 1990

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    I've been thinking about setting up a table on Thursday, May 12th, for International Awareness Day. I'd like to hand out information and raise awareness.

    My idea is in the initial stages. I have no details yet, only a vague idea. I've never done something like this before and have no idea whether I can make it happen. But I'd like to try!

    I've already posted on MEAction and also the Pacific Northwest group (see http://forums.phoenixrising.me/index.php?xfa-groups-group/pacific-northwest.9/group-detail ) asking for people to join me locally. I've had one positive response so far, so that's hopeful!

    But I'd also like information and ideas from people who are not in the Portland, Oregon area.

    Has anyone done this sort of thing before? If so, would you be willing to share tips on what worked and what didn't?

    For those who have never done this, do you have an ideas that might help me?

    I am not quite sure where to start. Where would be a good place for some sort of information table? I'm thinking some public place with a fair amount of foot traffic. And it would definitely have to be inside, climate controlled, for me. So, perhaps at a mall? Or maybe a library?

    Once I get a few ideas on where then I'll have to figure out who to ask for permission, where to get a table and 1-2 chairs (can they provide it or do I need to find a folding table/chairs), what kind of signs or banner to have, etc.

    And then what kind of information should I pass out? I don't plan to create new handouts from scratch but simply locate info that's already out there and make copies.

    I did spend a little time thinking about my goals. What do I hope to achieve from doing this? Here's a brief list:

    1. Information - primary goal

    I hope folks who talk with me (or us, if multiple people) learn that this is a serious illness. Even if all they remember is that CFS (most people in the USA don't know ME or ME/CFS) does not mean "tired all the time," that it has many serious symptoms, then I will feel I've had a worthwhile impact. As far as the number of people to reach I don't really have a goal.

    Possible sources of information = Feb 2015 IOM report (Key Facts PDF), reprints of newspaper articles, info on proposed NIH research study (omit controversy, too complicated for newbies)

    2. Fund raising - secondary goal

    Have info available in case people ask about making donations to research
    (e.g., OMF, Solve ME/CFS - others?)

    3. Political - stretch goal

    Perhaps some form letters to send to senators and congress reps, Re: increase NIH funding?

    Okay, that's it for now. Hope this was not too long!

    Thanks in advance for any advice or suggestions!
     
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  2. aaron_c

    aaron_c Senior Member

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    Library might work...but I think we'd need to find one that had an area in front somewhat separate from the book part of the library--so that we could talk to people and not disturb the quiet of the place.

    I wonder if we should be asking for money...I think it is easier to get people to talk to you if you don't. And I don't want to leave a weird taste in someone's mouth afterwards, like they took the time to stop and talk to these people, they gave money because they felt guilty, but they don't actually have any perspective on ME/CFS other than what they were just told, so they are not 100% sure that they weren't just scammed.

    Also, I find asking for money very tiring, so I think I'll last longer if I can just talk about ME/CFS.

    I think having something for people to sign is a fantastic idea.

    Maybe we could offer free cups of tea or something? Although if we were in a library, we couldn't compete with their concession stand.
     
    ahimsa likes this.
  3. PDXhausted

    PDXhausted Senior Member

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    I'm too sick to join in person but will be with you in spirit.

    I was trying to think of some ideas and was thinking about OHSU... there are so many places around the campus that have potential, but I guess the indoor spots would technically be private property(?) or require some sort of permission, so maybe not a great idea after all. They always seem to have some disease awareness event going on, but I'm sure it's all by corporate committee!
     
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  4. ahimsa

    ahimsa Sick since 1990

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    :heart: Thanks for the responses! :heart:

    My current ideas for locations are library branches and malls. Or maybe even a large doctor's office or hospital lobby (thanks for the idea, @PDXhausted !) since they might appreciate that it's a health related issue. Since it's just handing out information, not selling anything, not collecting donations, then I'm hoping that one of these places will agree to it.

    I'm making a list of possibilities with all the contact information. I plan to start making calls and sending email later this week. Meanwhile, keep your ideas coming.

    Some folks may wonder, with good weather coming up, why not do this outside? Well, I have a very limited temperature range that is good for me. Plus, there are other obstacles, everything from traffic noise (unless it's a park?) to rain (completely unpredictable weather here). And we'd probably still need permission to set up a table outside somewhere.

    If we can't find a place inside, and it must happen outside, then I would have to hand it off to someone else to do the actual event. But I would happily help with any organization and getting information printed.

    I definitely cannot stand (dysautonomia) so this activity can't be like those people on street corners asking for petition signatures.

    Oops, sorry that my message was unclear. I agree with you! I don't want to ask for money! I don't even want to bring up the subject of donations.

    But I do want to have information available so that if someone asks us about where to donate we can give them some information about where to donate their money. That's why it was a secondary goal, not a primary goal.

    I don't know about tea, but I was thinking (one of my stretch goals, but not listed) about some sort of giveaway. I just don't know what it should be. Something small, inexpensive, and blue was as far as I got.

    I know blue ribbons are associated with ME/CFS awareness. But I can't see the average person actually taking a ribbon, let alone wearing one. (although it would be good for the folks sitting at the table to be wearing blue ribbons) I think it's going to be hard enough just to get folks to want to come over to the table and take information. So, maybe give away something else that's blue?

    Here's one silly idea, blue lollipops - http://www.partycity.com/product/caribbean blue lollipops 26oz.do

    Whether they take any flyers or not we could still give them a lollipop. Something to make it a bit more fun, not all so serious.

    :star: Keep those ideas coming.:star:
     
    Last edited: Apr 13, 2016
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  5. aaron_c

    aaron_c Senior Member

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    In case anyone hasn't hooked in, here is the ME Action coordination for May 25. They are having a video conference this Sunday to discuss May 25 events. They say it will be at 4:00, although they don't provide a time zone... Possibly the link won't work because this is the page for me, having already signed up. But it will be there if you look. I plan to ask them about handouts and posters that they have already designed for us.

    More ideas:

    Christmas lights. I always find Christmas lights inviting. The multi-colored ones, probably LED (I have some) Just in terms of setting a tone that, at a glance, makes us approachable.

    @PDXhausted I like OHSU, because wow would it be fantastic to have conversations with future doctors and researchers on why ME/CFS is not psychosomatic. How many would take the time to talk to us? I don't know. But I bet we could hand out a slightly decent number of pamphlets that talk about problems with PACE, the biomarkers that they found recently at Stanford, and...whatever the official name for the 2-day treadmill oxygen-monitoring test.

    I wonder if we should shift our activities to the nearest weekend? Wednesday isn't exactly the best day to catch people wandering around.
     
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  6. ahimsa

    ahimsa Sick since 1990

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    I happened to see another announcement w/time zone - it's 4 PM Eastern. So that's 1 PM Pacific.
     
  7. ahimsa

    ahimsa Sick since 1990

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    This is a nice image - I like it! I don't know about logistics (outlets, extension cords, codes, etc.) but if it is possible to do then it would be nice to have lights on or around the table in some way. Would draw attention to it.
     
  8. PDXhausted

    PDXhausted Senior Member

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    Maybe blue electrolyte solution :lol: (kidding)

    Actually something like blue lollipops sounds like a good idea. Thanks for all your effort @ahimsa !
     
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  9. aaron_c

    aaron_c Senior Member

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    The Christmas lights I am thinking of run on batteries (hooray for LEDs). I'm not sure how bright they would be at mid-day, though. I'll have to look into it.
     
    ahimsa likes this.
  10. ahimsa

    ahimsa Sick since 1990

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    Yesterday a friend mentioned colleges/universities (e.g., PSU) as another possible location.

    I'm still collecting information. Looking at my list of things to do (and knowing that REST is a big one) I have realized that I probably won't start sending email & making phone calls until next week, probably Monday.

    Just wanted to keep folks informed (and motivated!). :)
     
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  11. aaron_c

    aaron_c Senior Member

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    I also like PSU. I know some students there...I *think* we can count on their help if we need to be affiliated with a student group.
     
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  12. ahimsa

    ahimsa Sick since 1990

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    Quick update -

    Just to clear up any possible confusion, this thread is about trying to plan a small activity (1-2 people) in the Portland, Oregon, area for May 12th. That's the International Awareness Day for ME/CFS (and FIbromyalgia).

    I had this idea (which might not work!) that maybe I could find a place where I could sit and hand out information on ME/CFS for a couple of hours. It would happen either on the actual day, Thursday, May 12th, or possibly that Friday or Saturday (May 13th or 14th). It's not a protest.

    Separately, there is a protest against HHS that is planned for May 25 called Millions Missing. That's a much bigger event. It is being organized by a lot more people (with more experience/brains!) and is unrelated to my idea. It's being organized by the MEAction folks. More information about that protest can be found here - http://millionsmissing.meaction.net/

    I do plan to send a pair of my shoes to Washington, DC, for the Millions Missing protest after the address is announced. And I can help gather up shoes for people who live in the Portland, OR, area if there are folks who can't pack up and ship boxes by themselves (and who can't afford to buy shoes online and have them shipped).

    Unfortunately, I can't participate in anything in person on May 25th, either locally or in Washington, DC. I have some family obligations during that week of May that were made several months ago.

    I'm so sorry if I did not make that clear!
     
    Last edited: Apr 19, 2016
  13. ahimsa

    ahimsa Sick since 1990

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    I had a mild crash earlier this week. I had some unexpected issues (my husband had a minor injury, I'm supporting a friend going through some personal issues). So I pushed myself too much, both physically and mentally. Brain fog and pain means I have not been online very much.

    I have not found any place willing to let someone sit inside and hand out information. I knew that was a long shot when I started (which is why I was so tentative even in my very first message) but thought I'd try.

    I'm sorry if I am letting folks down by posting an idea and then not being able to follow through on it.

    If there is someone else in the Portland area who does not have issues with warm weather, and who could sit outside, please send me a private message. Otherwise I think this idea isn't going to happen.

    Reminder to those who are still confused: The Millions Missing protest on May 25th is a completely separate event. I am unable to participate in person in any event on May 25th. I do plan to send my shoes and also hope to purchase one or two of the congressional packs - http://www.forgottenplague.com/product/congressional-pack/
     
  14. aaron_c

    aaron_c Senior Member

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    @ahimsa : Sorry to hear this! I hope you feel better soon.
     
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