Jenn Brea Gets Whacked on the Internet - and Responds

[Cort]

Jen Brea, the creator of Canary in a Coal Mine film got whacked by someone and responded with the blog

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

(The answer seems to be yes . There is often a fray...parts of the ME/CFS community beating up each other...)

Throughout, I have had to deal with all manner of criticism. I am “harming ME patients around the world.” I am a “fake advocate.” I am taking money from the government. I am a “stooge” of [insert name of random person I have never met or had any contact with]. I am frequently accused of guilt by association (that person once posted about me on Facebook, we must be lovers). Or critiqued for my personality, “she sounds too perky–give her a few more years with this illness, she will learn.”

I am used to being the subject of personal attacks by now — it’s part of my job and part of the tax I pay in order to do my work. I am happy for others to critique my methods or my vision or my model of change, but that rarely happens. It almost always goes sideways, gets a little personal, and the critiques usually have little relation to the reality of the work I am doing, my motivations behind it, and the enormous daily effort that goes unobserved.

There are three things I have learned in my short years as a public advocate: that this tone of critique constitutes a very loud but very small minority; that anyone who tries to build, or make, or do will inevitably face similar criticism; and that because many of us are just too sick to handle the emotional conflict, this aspect of our community’s culture ultimately discourages many would stand up and become activists from diving into the fray.

ME4Action

Why start off an advocacy organization attacking another ME/CFS group? This is what they 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.

 

[Cort]

The upshot of all this is that group just shut itself down! Of course they blamed Jen Brea - who was responding to the initial attack - for their demise...Responsibility was apparently not a big theme for them: let's see - one of their leaders launches a rather personal and public attack on Jen. Jen responds - Jen is responsible.

https://advocating4me.wordpress.com/

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.

 

[Cort]

It was kind of weird group anyway.

Secondly you will never know the true identity of our leaders. It’s not because we want to hide from you, just to protect ourselves from negative fallout from those with a vested interest in maintaining the status quo, and preserve the privacy of those that we collaborate with. We look forward to hearing from those in the M.E. community who share similar priorities and objectives.

 

[Who Me?]

It was kind of weird group anyway.

I was going to ask who the leaders are but apparently they don't want to stand behind their advocacy?

I would never throw in with someone who refuses to stand up and say who they are. Jenn isn't anonymous why should they be?