1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

Brainstorming for positive and constructive advocacy ideas

Discussion in 'Action Alerts and Advocacy' started by Bob, Oct 7, 2011.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,168
    NYC (& RI)
    I agree with both Bob and BDF! I generally just vote even if i'm not 100% behind an org. CAA would be the only US org I know of I wouldn't vote for, so answers to Bob's questions would be a bit useful, but not too much. However, there seems to be a lot of people who want their questions answered before they will consider voting, so it makes sense to have answers to all these FAQs listed on the orgs website plus putting them in the first post of a contest thread would help people a lot. A lot of people like me don't have time to read thru the whole thread looking for answers.

    Making things easy for the voters is key. For some that means having easy access to answers to their questions.
  2. Tuha

    Tuha Senior Member

    Messages:
    738
    Likes:
    798
    I think cort has this ability. I think this would be the best way how to contact the most patients possible and to let them know about an action. everyone is using his email almost daily. How you say the problem is that it is not being used by many. I remember how we informed the other organisations in Chase community giving contest - we just had a list with ME/cfs organisations and we contacted them one by one and asked them about the promotiom of this contest between the members (I dont know which of them really did it but I dont think many). then maybe 1 week later we did the same work with vivint contest. Thats when I told myself that it cannot continue like this - we are all the time doing the same work which takes for days. we need that the most of organisations participate and inform their members. we need to be sure that if you write an organisation - its a right email and that they will take the message to their members. Now you contact an organisation but most of the time you dont get any answer.

    so I think we need to know which organisations would like to participate on advocacy effortand they would contact their members. if we will know and we will have their contact then you can send just 1 email and they will know about. now everything seems to me chotic very chaotic and the result is that there are less and less advocacy effort because the patients support is really small
  3. Aileen

    Aileen Senior Member

    Messages:
    563
    Likes:
    428
    Canada
    I think I've found a pretty good balance. My groups over on another community are geographically-based. I use this tool for 3 main reasons:

    1. To announce the start of an on-line contest (one message only, no follow up)
    2. To announce an important meeting or talk by an ME/FM specialist being given in the area that has been announced on short notice. (some people are on these forums infrequently and might miss the opportunity if not notified by email otherwise).
    3. To announce that a study is recruiting or soon to recruit patients within the area so that everyone has a chance to look into it right away if they wish (some people may be too late if they don't see a post for several weeks)

    If some rare other urgent or important thing comes up I'll send a message but unless it is time-sensitive or I have requested action on something important for the community on the forums and it has not been acted upon I don't send anything. You have to keep these infrequent or people will just ignore them. Also people have enough email to deal with and you have to ask yourself if they really need to spend the energy reading this. I really think before sending those out.
  4. Aileen

    Aileen Senior Member

    Messages:
    563
    Likes:
    428
    Canada
    Thanks Willow. This is very helpful. Just to do a bit of a postmortem on the National ME/FM Action Network's "campaign" if we can call it that perhaps some of us assumed that more patients knew more about the organization than they actually did. Since you are in the UK, perhaps you can tell me if the organization is known over there?
  5. Aileen

    Aileen Senior Member

    Messages:
    563
    Likes:
    428
    Canada
    Hi Bob,
    Thank you for such a thoughtful reply and yes it is helpful. If I am reading this correctly, your first 2 questions are referring to the company (ie. Vivint). You would want to know something about them. Would a link to the explanation on their site be sufficient (they always explain why they are giving away the money) or would you want someone to write this up for you if you were a non-voter? What do you think?

    In past contests, including current ones, on other forums I have provided the answers to the above questions as well as the end date & time of the voting and step-by-step voting instructions for those who aren't very computer literate.

    I know that I found the daily voting counts of our charities and our main competition very helpful during the Vivint contest although I know it was a HUGE effort. I think that should be done with each big contest. Too much work for the smaller ones like Citigo especially if we are doing well. Do you think that reminders to vote, on the forums not personal emails, are helpful? And updates in the standings for people who may not want to check for themselves even if there is a leaderboard?

    Again, more knowledge of the charity seeking the money comes up. Perhaps some promotion is needed not only during the contest but before the contest of the charity itself and perhaps what the upcoming project is? We certainly let people know we needed the money to pay for the conference during the Vivint contest (and look what came out of that conference!! :eek:).
  6. Bob

    Bob

    Messages:
    7,793
    Likes:
    9,379
    England, UK
    Hi Aileen,

    Glad it was helpful.
    Just to make clear again, I'm not pretending to be any sort of authority on this, and these are just my personal thoughts, so I don't know if any of my suggestions would help in practise.

    I'm trying to think about it from the point of view of someone who isn't usually massively engaged in this type of activity.
    And because voting contests aren't something that I'm often drawn to, I can speak with some personal experience.

    I did get involved in two large contests over the past year, but I can't remember what they were now. (I have a useless brain for details!)
    There was a heck of a lot of activity on the forum in relation to them, and I was drawn in, and I even used a new facebook account.
    All the info and activity on the forum was instrumental in getting me involved.
    So I think you need to make a big splash on the forum - with eye catching thread titles that draw people in.


    Yes, that's right... I didn't understand why Vivint (or whoever) were giving away money... A link directly to the explanation would have been fine, just to satisfy my curiosity... It wouldn't need writing up.


    Yes, it was all of this sort of info that drew me into the couple of contests that i've been involved with, and made it easy and interesting for me to get involved.
    And it was the ongoing updates that kept me involved.


    Yes, daily updates, constant reminders, repeating of information, and lots of encouragement on the forum were definitely essential to keep me engaged.
    I don't think there can be too much encouragement on the forum, because people can opt in and out as they wish, but you would need to be more sensitive about bombarding people with emails, unless they specifically opt in to receiving daily or weekly reminders for example. Some people might like to get daily reminders, but others would find it intrusive. If you do emails, then it should be very easy for people to opt in and out of receiving them, whenever they want to.


    I'm not sure what you mean here?


    There are always going to be a good many people who aren't very familiar with your charity and exactly what you do. So I think this piece of the jigsaw puzzle is essential in order to capture people's imaginations.
    I think that details about the charity and what the money will be used for, and why it will benefit the community, will be what motivates people to get involved in the first place.
  7. Bob

    Bob

    Messages:
    7,793
    Likes:
    9,379
    England, UK
    Hi Aileen, I hope this won't disappoint you...
    I'm UK based and I'm afraid that I don't remember ever hearing of the National ME/FM Action Network.
    I have a brain like a sieve, so it's quite possible that I've come across you before, but just don't remember.
  8. Bob

    Bob

    Messages:
    7,793
    Likes:
    9,379
    England, UK
    Yes, I think it would be helpful to have an easy way for people to contact local support group organisers and other patient organisations...

    I suppose it might be useful for organisers to have their own dedicated news list group, or a forum specifically set up to share info with organisers.
  9. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    Like you, Bob, this is the second time I get involved in a voting contest, and I can say that it is quite exciting. It's just too bad that we did not find out soon enough for the ME/FM National Network. They did deserve our support. However, we are living some exiciting moments right now with the Heroes contest. MARLY is 3 votes away from getting the 8th place. She is cruising along. It feels like we are in the middle of a horse race (not that MARLY is a horse! LOL). Each time I wake up, I feel drawn to check the leaderboard. It will make me feel good to see her win.

    Please vote if you can. :hug:

See more popular forum discussions.

Share This Page