Be sure to stop over at #MEaction and sign their petition to stop Graded Exercise Therapy trials being performed in the UK on children and adults. In light of the analysis performed on the full data that was finally released, it is inhumane and completely without value to continue subjecting people with ME/CFS to such trials. Not only was the PACE trial itself a failure that was hidden for years, many subsequent studies have additionally shown poor or even harmful results stemming from this therapy.
If you are a citizen of the United Kingdom, sign the UK PARLIAMENT PETITION
If you are a citizen of any other country, sign the GLOBAL SUPPORT PETITION
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.