MEAction Network Activist Exits w/ Warning 

I happened along the video below in a discussion taking place on twitter. This gentleman and I follow each other on twitter, but we don’t know each other, ir rather we haven’t had cause to discuss much with each other. But I was intrigued by the tone and context of the conversation, which was about ME advocates (primarily other ME patients) abusing fellow advocates and patients and the rampant nature of it within the community. I have witnessed it, I have seen it, and I have been concerned about it for many of the same reasons as he states in the video. It’s brief. Give it a watch.

Not only is it wildly problematic that we treat each other in such a way when we are the only support each other has, the only world that most of us have to depend on and derive any sense of self-worth from, it’s self-defeating. This is also the spirit from which our activism springs and believe me,  it makes a huge impact. No movement can ever be propelled forward and make strides in the right direction doing such ridiculously self-defeating shit as being repeatedly disrespectful to every Health Organization, doctor, researcher and scientist they are supposed to be swaying to our side ir working with for our benefit. 

There are two sides to effective rhetoric they could be using and they seem to miss the train on both. This video only confirms these impressions. First you use the fiery “we’re not gonna take it” rhetoric and use it to pump up your ranks and get things done, remind them why you’re all there and doing the important work you are, all while constantly reminding them that it can’t be done without them, because it 100% cannot. 

The other side is to respectfully and thoroughly persuade the opposition to your side. You do this through the use of logic, compelling arguments, and damn good statistics, backed up by great expert testimony. How can we have that if they’re always offending people like this organization always does? It never fails to floor me.

This is exactly why I’ve chosen to remain separate from the organization despite my fairly extensive background in organizing and demonstrating. I know my CNS can’t handle the stress of a dysfunctional organization such as MEAction, so I’ll just keep doing what I do to educate and enlighten on my own. It’s also why I will always interact with everyone in the community with dignity and respect and if I don’t feel like I can do that, I simply stay away from social media. I don’t ever want to talk to anyone the way some people have spoken to me.

Perhaps someday, I’ll find a group of like minded individuals and start an advocacy group of my own. I know it would look a lot different from most that already exist. I also know I’d have to be in better health than I am now, too. But a girl can dream.


4 thoughts on “MEAction Network Activist Exits w/ Warning 

  1. Do what you can personally, try not to spit on the others doing the same, and hope someone takes this and finishes finding the answers of why and what to do about it because that’s what medical researchers are supposed to do.

    My pet peeve: the people who insist, given how little we really know, that their ME and my CFS are different. And they’re somehow better. And more deserving.

    The label you get when you get diagnosed still depends on exactly who diagnoses you and how that person does things. We aren’t lucky enough to have the energy to go to a bunch of worldwide specialists and pick the ‘right’ one. I got ‘CFS’ from a nice young infectious diseases doctor 27 years ago. He said he wished it could be anything else. I knew enough at the time to agree. Nothing has changed.

    Right now research is a bunch of people looking very hard at their tiny section of the elephant.

    Liked by 1 person

    1. Yes, all very good points, Alicia. I hate the name CFS, but I use it because it’s the official name in the US and what’s recognized. It’s also the diagnosis I was given, but it’s no different than ME and experts know that. Laypeople who want to argue with me can suck an egg 🙂 When people get grouchy with me, I try to chock it up to being in pain and dealing with all the lovely facets of having the illness and just try to move on. I hope others do the same with me when I have my occasional bad day, though I try to stay away when I know my temper is running hot 🙂 I do think disseminating correct and current information helps though, so I’m going to keep at it, even if it sometimes feels like banging my head against the same old wall 🙂


      1. Walls are there for us to band our heads on, it seems.

        I completely approve of your attitude. Not that you should care!

        When there comes an understanding, I hope we all get an apology. They can start with my doctors. AFTER curing us all, of course.

        I have a temper. When I can’t control it, I stay away from other people.

        Liked by 1 person

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