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Advocating4ME releases goals, objectives & priorities

Discussion in 'Action Alerts and Advocacy' started by redviper, May 14, 2015.

  1. redviper

    redviper Senior Member

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    Hello everyone,

    Advocating4ME has just released the "Blue Paper" on their website which outlines their goals, objectives and priorities moving forward. It's definitely worth reading over for all those in the M.E. community that have an interest in advocacy.

    https://advocating4me.wordpress.com/
     
    Last edited by a moderator: May 15, 2015
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  2. Denise

    Denise Senior Member

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    @redvivper - is there a way to find out who is involved with this effort? The signature on the Blue Paper only says
    Signed,

    The board of directors for Advocating4ME
     
  3. halcyon

    halcyon Senior Member

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    See the last paragraph:
     
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  4. Kina

    Kina Admin Support Staff

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    I think this group has some good ideas but for me, I will not, and cannot support a group whose leaders will not say who they are.
     
  5. Denise

    Denise Senior Member

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  6. redviper

    redviper Senior Member

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    Just because there is no public face to the organization does not mean that intense collaboration between partners does not take behind the scenes. If you are curious about potentially collaborating with the organization, I would suggest you send them a message on facebook instead of questioning their motives on PR. Based off their platform, they seem very open to collaboration with those who share a similar perspective.
     
    Last edited by a moderator: May 15, 2015
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  7. Denise

    Denise Senior Member

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    I am curious.
    I am not questioning motives.
    In my case, I suppose collaboration isn't possible as I am not on social media such as FB.
     
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  8. snowathlete

    snowathlete Not an ol' sleazebag

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    Non starter for me. I'm sure they have good and honourable reasons and I can totally understand their desire for anonymity, but at least one person needs to be visible otherwise people may not feel able to support their work. It's normal for some people to be working anonymously behind the scenes but at least one person needs to be the face in order to take responsibility and give credibility to the group.

    Will read what they're about if they decide to open up a little.
     
  9. Kina

    Kina Admin Support Staff

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    The board of directors of any organization needs to be transparent.
     
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  10. redviper

    redviper Senior Member

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    Some of you do realize this is a patient advocacy group, right? Our choice is either to protect the identity of those involved, or not participate in advocacy for the M.E. community at all. Our leadership is committed to making a difference for the M.E. community through whatever means possible.
     
    Last edited by a moderator: May 15, 2015
  11. barbc56

    barbc56 Senior Member

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    This is the same as saying, "Trust us, we know what we're doing. Just don't take off the blindfold." when we don't even know who makes up this organization.
    https://m.facebook.com/pages/Advocating4ME/1606524889591699

    So why dont we just contribute individually or through organizations that are more forthcoming?

    I found the paper rather nebulous other than other organizations have failed the patient community so "we" want to help. What does that mean? Who do we complain to if, for example, there is a shift towards a policy some may disagree? Facebook?

    When others whether patients, government, institutions or the CBT/GET brigade are less than transparent, we find this behavior unacceptable. We should.

    I'll hold this organization to that same standard.

    I'll pass.

    Barb
     
    Last edited: May 14, 2015
  12. Valentijn

    Valentijn The Diabolic Logic

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    I understand the desire for anonymity, but stepping into a public advocacy role requires leaving that behind. If they aren't ready to do that, then they are not ready to be a public advocacy group.
     
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  13. alex3619

    alex3619 Senior Member

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    I had to make the decision, many years ago, to be a covert or overt advocate. I chose overt. There are reasons not to, but some of us have to do it. Some of us seem to have some success at doing both however.
     
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  14. Sasha

    Sasha Fine, thank you

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    I can see both sides of this. If this group was asking for donations, it wouldn't be appropriate to withhold names - in fact, you'd want them to set up formally as a non-profit so that they'd be accountable. But they don't appear to be doing that.

    If all they're doing is asking for people to support specific projects - for example, support a petition that we can read and make our own minds up on, on a case by case basis - I don't see that it makes any difference that we don't know their names.

    However, if they want people to support their organisation (in the sense of endorsing it by 'liking' their FB page as they're asking, for example) then I think that people will be reluctant to do that because it's not clear who we're dealing with. It's possible that they're ordinary PWME whose names wouldn't mean anything to us if we knew them - but there are some people whose names we know and associate with damaging attitudes and behaviour and if they were involved, we might not want to support the group.

    It's also not clear at the moment how the group are going to behave and therefore many might find it difficult to offer the blanket endorsement that they're asking for.

    What I'm saying isn't intended as criticism and I understand the wish to remain anonymous - this is not a great world for PWME to 'out' themselves in, especially in some countries. It's frustrating to feel forced to remain in the shadows and yet want to do something good for the community. Unfortunately, remaining anonymous does bring its problems when asking for other people's support.

    @redviper, in this blog post on May 8 you say:

    Is that team Advocating4ME? Does that post reflect its position?

    In that blog post, you and the team that you were part of are critical of other advocates. Personally, I don't like to see that and if that's an organisation's starting point, it's a turn-off for me. I appreciate that there are different ways of doing things but I don't see them as mutually exclusive and I don't like to see people who have worked hard to get progress for us being attacked. The section that troubles me in particular is this:

    I can think of only one person in our community who has built infrastructure and organised Google+ hangouts and so this gives me the impression of personal attack. I doubt that I'm alone in that interpretation and so if I'm wrong, I hope you'll take this opportunity to correct that impression. It takes courage to stand up and lead - especially under one's own name - and for people safely hidden behind pseudonyms to criticise an identifiable person who is operating under their real name in the real world and is a real human being with real feelings would not be an attractive thing to most people. If this is Advocating4ME or any of its members in action, then I think that many will find this a cause for concern, and that's why I'm asking you to clarify.

    I'm always sorry to raise a question over a new initiative - but I think it's important to get these things out in the open, especially at the beginning and give Advocating4ME an opportunity to respond to concerns that might be widespread but that people feel uncomfortable bringing up. Then people can make a more informed decision over whether they want to support the group.

    @redviper, you are a member of Advocating4ME, I take it?
     
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  15. barbc56

    barbc56 Senior Member

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    I think you hit on something there but I'm only speculating. I could be completely wrong.


    Fair point. Maybe these responses, will make this more likely to happen.

    Barb

    Wow, you make even more great points in your post. For some reason I was only focusing on your last point, so missed the others.
     
    Last edited: May 15, 2015
  16. justy

    justy Senior Member

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    @Sasha - that's a great post and raises some important questions that I hope @redviper can address for us all. I think advocacy orgs are great and really want to support them. Im not sure yet what they will be doing the blog post was vague. I don't know about the letter you quoted as I hadn't seen it - but I also don't like the idea of personal attacks on particular community mmbers - the letter makes it pretty clear to everyone who it is they mean.

    There are also some people who seem to always bring trouble that I would rather ignore, so for that reason anonymity is hard. I decided a long time ago that I would be myself on PR - with my own picture etc as I thought it was important to not be anonymous for me. If I support the group without knowing what sort of things they might be doing AND don't know who they are then its hard for there to be any accountability.

    I was going to say I understand an anonymous stand, but in some ways I really don't - who will they be open to attack from if their identities are known? why be afraid of this group of potential attackers?

    Persoanlly I would rather be out and proud as the saying goes.
     
  17. Sasha

    Sasha Fine, thank you

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    I've no reason to suppose that this group in particular is hiding any well-known troublemakers, and I wasn't seeking to imply that. My point was meant more to be a general one about the issue of a group not naming its members. We're such a fractured community and there are some very angry people in it who lash out in unproductive and damaging ways, and I think that's a reason for caution in supporting any group. And it's not just an issue in relation to groups that are anonymous: a new group might start up who give their names, but if their names are unfamiliar, I think the same issue of caution arises, because people don't know how they're going to behave.

    When a new group starts up, all that we've got to go on is what they say about themselves - and at the beginning, that might not be enough to win people's trust.
     
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  18. redviper

    redviper Senior Member

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    Our leadership looks forward to clarifying their position further as to why they choose to remain anonymous in coming days. We look forward to continuing to offer the M.E. a viable alternative for internet advocacy moving forward . We have a bunch of innovative ideas coming for how we can make a positive impact for this community and are always seeking the collaboration of others in the community with similar objectives. Also, despite the protests of a few extremist elements here, I can assure you that our leadership remains committed to protecting the identity of those involved with our project moving forward.

    @Sasha we all know you have close connections with the #MEAction Network, so people can feel free to draw their own conclusions as to why you are attempting to discredit an emerging M.E. internet advocacy organization.
     
    Last edited by a moderator: May 15, 2015
  19. Scarecrow

    Scarecrow Annie Gsampel

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    @redviper I haven't noticed any extremist elements here. I think that comments have been very measured in calling attention to a group of people who want to advocate for others without disclosing their own identities.

    I have been reading this thread with interest and I have to say that I do not find your response at all reassuring.
     
  20. redviper

    redviper Senior Member

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    I'm sorry that people have had to witness the ugly side of the M.E. community in this thread. Most of these people have side agendas and comments like this make it almost impossible for sick M.E. patients to make a meaningful contribution moving forward. I'm going to recuse myself from this thread moving forward, as it's clearly not contributing anything positive to the M.E. advocacy movement at this point. That being said, I will still be checking messages here and look forward to hearing from anyone that wants to collaborate with Advocating4ME and make a difference for the M.E. community.

    Cheers,
     
    Last edited by a moderator: May 15, 2015

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