Advocacy board?

Discussion in 'Fibromyalgia Main Forum' started by Khalyal, Jun 18, 2009.

  1. Khalyal

    Khalyal New Member

    Just wondering how many of you would be interested in having a board devoted to advocacy? Some of the really good information that gets posted here just gets lost in the shuffle. It might be easier if we had a board devoted to this.

    Not sure we can get one, but would it help if we did?

  2. shari1677

    shari1677 New Member

    Most definitely. I'm in!!

    There are times I am way too tired to get near a computer and all the good information gets "lost in the shuffle" as you said.

  3. mezombie

    mezombie Member

    On the one hand, the advocacy posts can get lost in the shuffle. And it often feels like just a few are having a dialogue.

    On the other hand, people who don't consider themselves advocates read them and become educated. Some go on to do their bit for advocacy.

    Check out the numbers of readers on the advocacy posts! Many may not reply, but they are reading!

    So I'm undecided at the moment.

    I need to think (or at least try to!) a bit more about this.
  4. Rafiki

    Rafiki New Member

    but Zombers makes a good point.

    I remain concerned about my ability to comprehend and navigate the current situation.

    I can't read the long threads either - a few scrolls back and forth to find the last post I read and I'm done in - so an advocacy thread would only solve part of the problem for me.

    I don't know. Zombie makes a good point.

  5. skeptik2

    skeptik2 Member

    You and other mentioned this on the thread "Do you know what's going on" I posted; it's a wonderful idea, thank you for bringing it up again!

    I'd love one!!

    Someone had suggested it wouldn't be one long thread that way: each topic/suggested action would be separate, i.e. Topic: The CDC is sabatoging your human rights. Answer: write all your reps in Congress and the President, and Say This: (message + their comments).

    Let's see how many would agree.

  6. simpsons

    simpsons Member

    i think it would be a great idea to have a post with the latest advocacy action to take in simple format as you say skeptik.

    we all understand how hard it can be to follow however hard you want to try to understand and follow

    there is a way to make it so that you can follow links some clever people know how so perhaps they could set it up.

    we need something that points people in the right direction that can be easily followed. on the other hand we could make posts with action needed at the top and start the headers start with AN or some such abbreviation

    just brainstorming at the moment

    lets keep the idea.s coming many hands make light work
  7. jasminetee

    jasminetee Member

    I third this motion: "i think it would be a great idea to have a post with the latest advocacy action to take in simple format as you say skeptik."

    I'd like to see an Advocacy Sticky near the top of the page with the other permanent stickies. This would make doing advocate work so much easier for us all.

  8. simpsons

    simpsons Member

    yes further thoughts on this maybe we could have just links posted to advocacy threads that are of importance so that just the advocacy actions could be there to follow nice and simple but discussion thread links are there to follow so you can pull them up easy.

    also as it goes on and time passes these threads can be read by others wanting to look at them and not get lost in space

  9. jasminetee

    jasminetee Member

    I don't think it would be helpful to put up a Sticky of the discussions about the Advocacy, that can still be done on the board. It would be nice to just click on the Advocacy button and have it say: "Go here and do this" with the links provided. Then we can all thank the OP down in the board and discuss stuff there about it.
  10. skeptik2

    skeptik2 Member

    and for ACTION only: Maybe we could name it Advocacy Action Now! It really wouldn't have to be a Sticky, either; most actions have a deadline to be met, or one we'd like to see met by our members here.

    You know how on the chit chat board, they have a "porch" post #(gazillion, lol)?

    We could take turns as the moderator of ONE Advocacy Action; when the time is past for the action to be taken, or no more people leave a Reply that they "I DID IT!", we could go on to the next numbered advocacy action.

    No, that wouldn't work; there may be more than one action requiring attention at the same time, as there is right now!

    Well, just brainstorming, right?

    Maybe until PH offers a sticky, whomever would like to see action on a certain item could head their Post: ADVOCACY ACTION NEEDED NOW; Write CDC..tell them.... or something to that
    effect. That way, viewers will know the subject immediately, there will just be a link for them to go to, or an address (maybe just even one address at a time), and all they have to do is one short action, hopefully right then and there.

    Those who are so inclined would do so; however, will this "catch" those who have no idea how effective they could be if there were unity among us, all of us acting in concert, all of us with one goal (like making sure ME is adopted by the U.S. immediately!)? I'm afraid we would be preaching to the choir.

    Ok, brain dead; nap time...

  11. Rafiki

    Rafiki New Member

    I'm not apathetic to the issues but I am definitely overwhelmed by the executive functioning necessary to keep up with the issues in an unorganized forum.

    Everything about trying to keep up with both activism and research are very difficult for me on this board design. I think that we all experience different degrees, and perhaps kinds, of cognitive dysfunction.

    There are a number of issues. Someone very kindly put together a summary post of current events several days ago. Unfortunately, that post is of very little usefulness to me because it is very long, contains multiple issues and must be scrolled to be read. I'm not, of course, saying that the post should have been different - it was a great help to many - but, with my issues, I could not take advantage of that opportunity.

    I really do think that many of us have executive functioning problems which require pretty tight external organization. In addition to which, we must deal with the sensory stimulation issues which really kick in for me when scrolling.

    There are boards here which get one post every few months. Today someone posted a question about Parkinson's on the Parkinson's board but it is highly unlikely that he will get an answer. It's a similar situation on the AIDS board. Personally, I think it's a mistake to have these boards as it only creates false hope in those who post - if they were going to become well used it would have happened already - posts simply languish there.

    You mention Facebook. I do a lot of advocacy on Facebook. Only a small piece of it is for ME as I am still very active - virtually - in peace, environment, social justice, etc. I'm active in many ways online as I have always been very political. When I was able I was active in these causes in the real world and have been for nearly 40 years.

    One of the pages we could take from the orthodox activists handbook, not that there actually is one, is to pay attention to how our message is shaped.

    Even when speaking to people who's cognition is completely intact, a message which requires action should be short, concise, without extraneous info and with clear directions as to precisely what to do. This is a challenge for some of us, too. It certainly is for me.

    I do agree, Kamina, that there seems to be little interest and it is disappointing but I fear there may be more like me who simply cannot get through the "noise" and hope there are more who want to.

    As it is now, with everything on one board, it is like saying: Somewhere over there on my desk full of papers about everything under the sun is a petition but there is a lot of information to be read on the petition and, as I said, it's buried under an avalanche of info.

    One of the issues I had to deal with as an activist in the real world was how to break through the information "clutter" with a message that was easy to understand and the steps to be taken clearly stated.

    Avaaz dot org, an efficient and popular e-petition movement, makes it so simple for one to sign up, sign on and continue to sign petition after petition with one click. Even for the general public it is necessary to follow the KISS rule: keep it simple, stupid.

    Maybe we could think of it as the KISCI rule: keep it simple, cognitively impaired.

    2 cents,

    PS It doesn't help that we time out so easily when posting - argh! Nearly lost this which, come to think, might not have been such a bad idea :eek:)
  12. jasminetee

    jasminetee Member

    in Advocacy here. But my motives for wanting an Advocacy Sticky are also for myself. Alot of days I have the energy to post here or go in Chat but not to do Advocacy. I have to put that off until I have less brainfog and feel better and have more energy. I know I miss doing some of what I want to do. Then I'll be feeling somewhat better and can't find the Advocacy I put off.

    And I am part of the choir. :) So if that's how it is for me.....

    [This Message was Edited on 06/25/2009]
  13. Bunchy

    Bunchy New Member

    I'm wondering if also the long informative posts could also be summed up briefly in another seperate post for those of us with too much brain fog to read through very long posts.

    Love Bunchy x
  14. memauz

    memauz New Member

    I got put on Lyrica about 3 weeks ago......25 mg x 3 times daily.......then it went up to 50 mg 3 x daily after 2 weeks....I THOUGHT I WAS GOING CRAZY!!!!!!!!!

    The side effects of Lyrica never mentioned "sleeplessness".....when i saw your message, I was very relieved to know it's not just me.

    I also slept great on Lyrica when I first started taking, it's night #4 that I can't sleep (ususally fall asleep around 4 am lately)....

    THIS IS THE REASON I STOPPED TAKING CYMBALTA.......i just couldn't sleep!!!
    Are you still out there?? What, if anything, have you done for your sleeplessness?? I would love to hear from you

    [This Message was Edited on 09/02/2009]
    [This Message was Edited on 09/02/2009]
  15. denis321

    denis321 New Member

    Mezombie's point is extremely important.... the more people a message is exposed to, the better. I agree that many people do not see themselves as "advocates" per se and will not make the extra effort to go to an 'advocacy' board. However, if they stumbled upon an intriguing thread title, they will look.

    I know we're all limited cognitively here but advocates would do well to craft their messages with a hook, make it short and clear, use short sentences, and give people specifics on what to do. Some people write well with a lot of facts but I find their messages, which can go on for several screen shots, to be WAY WAY too long and I know there are others here who likely have even less concentration than myself.

    As for apathy, it exists but I am encouraged by the number of people who have participated in's recent surveys. Each one has received more than 1,000 responses with the latest getting about 1,700 unique responders. (And no, I don't work for but I am a member.) Check it out: