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:
redviper said:
Hey everyone, I was part of a small team to collaborate on this letter addressing both the successes and failures of the ME community during the past year. Obviously as one of the co-authors of the letters, I think it raises a variety of relevant issues worth discussing among the ME community moving forward. Here is the final version of the letter.
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:
redviper said:
Unfortunately, many of the current leadership of the ME internet advocacy movement have lost sight of what is in the best interests of the community. Instead of making funding research and drug trials their number one priority, these groups have focused on building unnecessary infrastructure and Google plus hangouts that fail to address the real issues impacting the ME community. In addition to syphoning away resources and effort from other advocacy projects in the community, these groups have failed to provide sufficient results considering the vast amount of effort and resources dedicated to them. Some of the individuals in leadership roles have also come to prioritize building their personal brand over promoting the best interests of the ME community.
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?
