Advocating4ME releases goals, objectives & priorities

[Sasha]

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 know you have close actions 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.

Presumably you mean 'close connections' rather than 'close actions' with #MEAction Network but in fact I have no such connections. I've made several posts in the past few days supporting their new initiative, which I think is an excellent one, but then I've made many, many posts over the years here on PR making posts supporting what I consider to be good initiatives. If I see a good thing, I try to promote it.

Here are the threads I've started just in the last week or so, and as you can see, I've supported and promoted a lot of initiatives:

http://forums.phoenixrising.me/inde...-for-250m-research-equality-for-me-cfs.37447/

http://forums.phoenixrising.me/inde...draiser-prof-carding-until-7pm-tonight.37500/

http://forums.phoenixrising.me/inde...look-spread-the-link.37475/page-2#post-595880

http://forums.phoenixrising.me/inde...s-project-by-students-a-ten-ton-jacket.37474/

http://forums.phoenixrising.me/inde...s-act-to-protect-us-as-disabled-people.37452/

http://forums.phoenixrising.me/index.php?threads/me-cfs-twitter-takeover-for-may-12-13.37417/

http://forums.phoenixrising.me/inde...l-campaign-for-me-cfs-funding-equality.37270/

And if you look back over the articles that I've written for Phoenix Rising (mostly in 2013) you'll see that I've supported many other new ventures.

I wasn't trying to discredit your organisation, @redviper - I was trying to help you save it. Your letter had given the impression that you were making a personal attack on someone and I had hoped that you were going to be able to explain yourself and to distance those views from Advocating4ME.

I'm completely baffled by your reference to 'extremist elements'.

However, I think you've now communicated the values of your organisation pretty clearly.

 

[Jonathan Edwards]

@redviper
To be honest, I think your friends are going about things the wrong way. The website is so unforthcoming it almost looks like a SPAM site. If people want to help the ME community they need to share trust and say who they are. It is perfectly reasonable for some to remain anonymous but some real person needs to be evident. Both a name and a face helps. Most people interested in supporting research are aware of these key groups needing funding so it is not very clear to me exactly what extra the site provides. I think the best way to encourage more funding is to make a personal contribution to ideas or thoughts about other people's ideas to give a sense of more real people pushing for support. Blank nameplates, without even a nickname or an avatar, is likely to get a blank response I think.

 

[Valentijn]

@redviper - You're making Advocating4ME sound exactly as bad as people feared it would be. You might want to reconsider how you interact with people when doing so on its behalf.

 

[snowathlete]

@redviper

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 know you have close actions 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.

I also dont understand the critism of #MEAction Network, who have only just launched and so far as I am aware, havent done anything yet, other than start a petition calling on appropriate funding for research - whats not to like about that? And of course, we know who is involved in that organization because they tell you (which does inspire trust, and they have acted professionally on threads about them in answering questions.

Fortunately there are some good groups involved in advocacy now, and we needed that. Naturally, people in the community will support the good ones and ignore the bad ones.

Oh yeah, and attacking @Sasha. Not cool. Sasha is a friend to me and many others on here and has never done anything remotely suspect. The really daft thing is that if your group resolved the issues raised, Sasha would probably be your biggest supporter on here - because as she says, she supports and promotes every good initive.

 

[Sasha]

Oh yeah, and attacking @Sasha. Not cool. Sasha is a friend to me and many others on here and has never done anything remotely suspect.

Thanks, @snowathlete.

The really daft thing is that if your group resolved the issues raised, Sasha would probably be your biggest supporter on here - because as she says, she supports and promotes every good initive.

Though I'm afraid I'm well past that point now with Advocating4ME, for reasons that I'm sure will be obvious.

 

[RustyJ]

Why is a link to Open Medicine Foundation provided? Is it Miller time?

 

[alex3619]

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.

Supporting projects is something we can figure out independently. Real world names are, indeed, not required.

 

[alex3619]

Who is in a particular organization is less relevant than what they are about. For example, there have been people on PR (gone now) who were adept at causing flame wars, trolling or generally being disagreeable. That does not mean PR is all about such people.

What organizations do, and say, is more important.

Having said that even one single public face in an otherwise anonymous organization can do much to improve general perception of it.

As to specific goals and initiatives we all need to be selective, but it pays to focus on the specific issue and not the organization. I will support good initiatives from organizations I don't like, and not support initiatives I see no point in from organizations I otherwise like. It is the case however that organizations that have a long history of stuffing up, like the CDC, lead me to look very closely at what they are saying.

 

[Sasha]

Supporting projects is something we can figure out independently. Real world names are, indeed, not required.

Having said that even one single public face in an otherwise anonymous organization can do much to improve general perception of it.

I don't want to prolong the agony here but strangely, even though redviper said:

Our leadership looks forward to clarifying their position further as to why they choose to remain anonymous in coming days. [...] I can assure you that our leadership remains committed to protecting the identity of those involved with our project moving forward.

...some googling on 'Advocating4ME' shows that there is a named person - a 'Lacey Stritton' with a photograph of herself who has posted widely about the launch of Advocating4ME in the comments sections of quite a few ME/CFS blogs, such as this one in which she says:

extremely well written article, thank you for doing this to raise awareness for the community!

Happy May 12th friends,

It is with great pleasure today that we announce the creation of “Advocating4ME”, a multi-national group of grassroots activists working together to raise funds for the most promising scientific research studies for Myalgic encephalomyelitis anywhere across the world. If possible, I would encourage you to come over and check out what we have planned in the near future

https://www.facebook.com/pages/Advocating4ME/1606524889591699

So she is presenting herself as a member of Advocating4ME.

Also, although redviper said in his blog post:

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.

...Lacey Stritton has posted an identical letter on Reddit and says that she wrote it on her own:

Over the past couple of weeks I have written this article about my thoughts on ME. It's also published on my blog, but I will just post a text version here

On Reddit it got this response:

I don't feel part of the advocacy movement, but if it's riven by infighting and power struggles, as this post suggests, I'm glad I'm not.

...which I suspect sums up the feelings of a lot of people when they see this kind of thing.

Anyway, this isn't one I'll be supporting.

 

[Sasha]

Jen Brea has responded:

https://medium.com/@jenbrea/must-there-be-a-fray-38f0b1daac8d

Very well said, @JenB.

There's plenty of room for everybody who wants to do good things, and no need for people to attack each other.

 

[Snow Leopard]

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.

Those of us who do real advocacy put our names on our work when we do so. I cannot support those who are unwilling to have a public face.

 

[Denise]

Those of us who do real advocacy put our names on our work when we do so. I cannot support those who are unwilling to have a public face.

re "real" - Ouch @Snow Leopard.I am concerned that that may come across as a bit harsh.
I think it likely that real advocacy can be done in many ways.
However I believe that organizations (other than whistleblowers* perhaps) that sponsor/coordinate advocacy must build trust and credibility in their organization via openness and transparency.


* I believe that whistleblowers are usually individuals and not orgs.

 

[Sasha]

Advocating4ME's Facebook page is still active and they've just posted:

https://www.facebook.com/pages/Advocating4ME/1606524889591699

They've also updated their Wordpress site:

https://advocating4me.wordpress.com/

They say they want to prioritise advocacy campaigns that are 'non-aggressive', which is ironic, considering that they started out by attacking another advocate for no good reason. No shred of an apology about their behaviour or any acknowledgement of people's concerns about what they've done.

 

[SOC]

They say they want to prioritise advocacy campaigns that are 'non-aggressive', which is ironic, considering that they started out by attacking another advocate for no good reason.

Not just one. They came after you pretty aggressively, too, Sasha.

I just can't get behind this group. There's too much of a loose cannon feeling to the whole thing. I don't want support it and then later find out they're up to all kinds of behaviors I completely reject -- like attacking other patients/advocates. I don't know who these people are, but what I've seen of their attitudes so far is not encouraging. It's a shame because I imagine we could all get behind advocacy for better research funding.... but not at the risk of fracturing the patient community and damaging our public image.

I'll sign a good petition if they put one out, but that's probably all I'm going to be comfortable with.

 

[RL_sparky]

I was just checking out there Wordpress site and I like there campaign to raise awareness among leading philanthropists and that Advocating4ME will never be involved in the handling of money. I'm not ready to write off this group even though I'm also concerned by there initial responses and the lack of transparency of those involved. I'm hoping they will make the changes that will garner more support.

 

[snowathlete]

I was just checking out there Wordpress site and I like there campaign to raise awareness among leading philanthropists and that Advocating4ME will never be involved in the handling of money. I'm not ready to write off this group even though I'm also concerned by there initial responses and the lack of transparency of those involved. I'm hoping they will make the changes that will garner more support.

The thing is, the approach they've taken thus far actually makes me hope they don't contact philantropists as I worry they'll destroy our chances with them. A bad advocacy group is worse than no advocacy group at all. I want to support advocacy from people with a level head who can act professionally and appropriately and represent me well. Is this that group? Well, not on what I've seen so far.

 

[aimossy]

There was a message on their FB that they were folding.

This from the webpage:

It is with great regret that Advocating4ME announces today that we will be immediately shutting down and ceasing advocacy operations on behalf of the Myalgic Encephalomyelitis community. Yesterday our group was criticized by one of the “gatekeepers” of the M.E. community on one of the more prominent M.E. platforms. Since then, our leadership and small-patient advocacy group has been subject to a climate of harassment and intimidation that has been extremely disappointing. For the sake and health of our chronically ill membership, we have unfortunately decided to disband Advocating4ME and cease our advocacy campaigns. As soon as the physical and emotional crash pass that the events of today have caused our leadership, our members are excited to get back involved with helping raise M.E. awareness at the local level.

In addition to helping chronically ill Myalgic Encephalomyelitis patients empower themselves and raise awareness for the M.E. community, we also hoped to use this platform to encourage the development of new leaders and new internet advocacy groups within the community. While we don’t necessarily agree with some of the tactics being utilized by a couple advocacy groups in the M.E. community, we never imagined that one of our leaders would use such a prominent platform within the M.E. community to criticize a small patient-only advocacy group. After all, you may disagree with our analysis of internet advocacy and that is okay. Reasonable people can disagree. However, to see someone using a platform that has been a rallying cry for the Myalgic Encephalomyelitis community over the years to criticize a small patient-only advocacy group is very disappointing. We also can’t help but notice that this criticism coincided within 24 hours of the announcement of our very first advocacy campaign.

Unfortunately this is becoming an increasingly common trend in the M.E. community, as a small group of leaders continue to try and consolidate all advocacy efforts under one brand and silence any dissenting voices within the M.E. advocacy community. This is particularly concerning because new ideas, approaches, organizations and leaders are needed to help get the M.E. community out of this living hell that we remain trapped in. The events of today have just once again reinforced the need for new leaders and organizations within the M.E. community.

 

[snowathlete]

There was a message on their FB that they were folding.

This from the webpage:

Yeah, they're the victims here...right.

Totally ignores the reality that they started throwing mud at other advocacy groups in the first place!

These people are totally Ill suited to advocacy on the level they were aiming for. Folding is the first sensible decision they've taken. I hope they can find something positive to do on the local level they're talking about.

 

[Sasha]

What a hypocritical pile of nonsense.

They launch a personal attack on a leading advocate and then launch their own advocacy group; they are questioned about their attack; they don't answer those questions and launch an attack on the person who questioned them; the first advocate they attacked defends herself; and now they're criticising her for doing that so publicly. And they say that they're being attacked and that they don't like it.

Frankly, I'm relieved that they've shut themselves down. I don't want these people representing our community.

It's a pity they don't seem to have learned any lessons about what's fair to other people.

 

[Valentijn]

Their spin on events is either deliberate or delusional. And in either event, the entire episode was pretty disgusting. I would hope that they learn something and grow from the experience, but that's looking like a long-shot at this point.