Advocating4ME releases goals, objectives & priorities

[Undisclosed]

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.

I am not sure exactly who this is referring to but I think a bit of constructive criticism is in order when you are claiming to speak for the community and attacking other advocacy groups.

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.

I would say the events of 'today' have reinforced my own preference that I want to know who is behind advocacy groups. There is room for many advocates and organizations within the ME world. There is no room for this kind of blaming and attacking.

Please review my signature and note this is my own view and not any kind of statement by Phoenix Rising.

 

[aimossy]

I find it quite unfathomable that people would attack something that could have been a huge benefit to their goal of letter writing to philanthropists. The ME Action website has been directly set up to help people and their efforts to do advocacy no matter what those efforts are or which group they originate from. It is designed to be unpolarising and collaborative. Talk about shooting yourself in the foot!

 

[Dx Revision Watch]

I don't want these people representing our community.

In my view, any pseudo-organisation or "advocacy group" that is not prepared to be transparent about who is behind it and is therefore not accountable for its actions, cannot claim a mandate to represent others.

It represents only the views and opinions of its anonymous or pseudonymous members.

 

[aimossy]

It wouldnt surprise me if ME Action would still try and help them with this goal and people would get behind the effort. Such is the committment to the ethos of what this platform is all about. The platform is looking at the big picture and trying to develope tools to enable us all to reach these important goals together. A place people can focus their efforts and collaborate. How is this such a bad thing.

 

[Snow Leopard]

I am not sure exactly who this is referring to but I think a bit of constructive criticism is in order when you are claiming to speak for the community and attacking other advocacy groups.

As far as I know, the primary criticism has been here, on Cort's forum and by Jen Brea (who was just responding to the fact that they criticised her first).

Jen Brea's blog post:
https://medium.com/@jenbrea/must-there-be-a-fray-38f0b1daac8d

I want to create a safe space for advocacy, focused on channeling our energies outwards, not directing them at each other. I want to foster critique and debate, but on a foundation of respect. We are all doing the best we can with the resources we have. Every one of these initiatives is an experiment with an unknown outcome. No one person has the answer, but I am confident the answer lies in all of us.

Cort Johnson's comments:
http://www.cortjohnson.org/forums/t...-on-the-internet-and-responds.2506/#post-4412

Why start off an advocacy organization attacking another ME/CFS group?

As for "Advocating4ME", they can do whatever they choose, but if they wish to continue larger scale advocacy, then I would recommend a change of tactics and approach. Little has been lost so far, and there are still lots of possibilites and avenues available. Live and learn.

 

[Sasha]

As for "Advocating4ME", they can do whatever they choose, but if they wish to continue larger scale advocacy, then I would recommend a change of tactics and approach. Little has been lost so far, and there are still lots of possibilites and avenues available. Live and learn.

I have to disagree there - I think they've seriously damaged their reputation, straight out of the gate.

Their attitude - attack someone, then attack someone else when questioned, make up stuff about people (me, with my supposed 'close connections' to #MEAction), fail to apologise, paint themselves as victims when their actual victim defends herself, misrepresent the situation to their FB followers who won't have had a clue what had really happened - this kind of thing isn't a mistake. It's a series of deliberate choices that they presumably discussed among themselves, and reflects a way of being in the world.

If they want to do some good for the ME world and to get their recovery and everybody else's further forward, I think that all they can do now is ditch their tainted Advocating4ME brand, go back to the drawing board, and think seriously about how they've behaved. If they repeat this kind of aggressive and unpleasant behaviour in future, they're only going to get the same reaction.

 

[Snow Leopard]

I have to disagree there - I think they've seriously damaged their reputation, straight out of the gate.

Oh, I mean with a new name, abandoning the anonymity etc. We'd be none the wiser a few months down the track.

 

[Sasha]

Oh, I mean with a new name, abandoning the anonymity etc. We'd be none the wiser a few months down the track.

I see what you mean - yes, I agree. A chance for a fresh start, if they can learn to deal with other people in the way they'd like to be treated themselves.

 

[Dx Revision Watch]

pseudo-organisation

By which I mean the following:

A group of individuals who present themselves as an "organisation" but are not registered, for example, with the Charity Commission (England) or as a 501(c) (U.S.), or which have not formed a board of trustees/directors/governors/managers, or are not in the process of registration;

or

a person who has created a website which calls itself an "organization" and presents itself as an "organisation" or allows itself to be presented by the media as an "organisation" but where there is only one individual behind it, and where, if any "associate" or "affiliate" or "coalition" organisations are alluded to, these are unnamed or where their relationship to the "organisation" is unclear;

either of the above, where "members of the organisation" are claimed to be being represented, but where there is no wider membership beyond the group, itself, or beyond a single individual.

 

[SOC]

Oh, I mean with a new name, abandoning the anonymity etc. We'd be none the wiser a few months down the track.

IF they've learned anything, which current evidence shows they have not. If they gave any indication that they understand what the problems were, and they they were responsible for them, then there might be a hope of starting afresh. As it is, they seem completely unaware of the problems and will therefore be unable to fix them and come up with a better advocacy organization a few months from now. It will just be more of the same.

My suggestion is that the members of this now defunct organization take worker roles in a responsible and transparent advocacy organization and learn from effective leaders how to interact with the rest of the world and gain the support of the people they are claiming to represent. Maybe a few years down the road, with that experience under their belts, they'll be able to take leadership roles in valuable, responsible advocacy organizations.

 

[dannybex]

Their attitude - attack someone, then attack someone else when questioned, make up stuff about people (me, with my supposed 'close connections' to #MEAction), fail to apologise, paint themselves as victims when their actual victim defends herself, misrepresent the situation to their FB followers who won't have had a clue what had really happened - this kind of thing isn't a mistake. It's a series of deliberate choices that they presumably discussed among themselves, and reflects a way of being in the world.

If they want to do some good for the ME world and to get their recovery and everybody else's further forward, I think that all they can do now is ditch their tainted Advocating4ME brand, go back to the drawing board, and think seriously about how they've behaved. If they repeat this kind of aggressive and unpleasant behaviour in future, they're only going to get the same reaction.

I wouldn't hold your breath @Sasha. None of us knows who actually was involved with this group, but it reminds me of the minority of folks who left these forums a few years ago and started their own forum because they couldn't tolerate anyone disagreeing with their 'truth' that XMRV, Dr. Mikovits and the Whittemores were 'the' answer and 'the' saviors, respectively.

If anyone dared raise questions about that hypothesis and the work of Dr. M., then they were automatically and repeatedly attacked and suspected of being part of some CFIDS Association Cabal or some other paranoid plot to keep us sick and silent. Even the Whittemores, who were saints just a year or two earlier, were open targets once they began to question the doctor's findings.

Anyway, whoever was involved probably means well, but they just don't seem to comprehend that there will always be a difference of opinions, and many questions, and that to expect every single person to agree with every single thing they say is unrealistic at the very least, unproductive at best, and will always end in failure.

They've proven that in only 10 days.