By John Herd
The nasty contentiousness happening on some ME/CFS on-line forums, and metastasizing over into Facebook pages and email is revolting. People have become rabid, stalking victims in packs. Such things as truth, objectivity, civility, and accountability are being discarded in their attacks.
I’ve never in all the years of CFS advocacy seen anything like this rabid mass phenomenon. We’ve had individual people who have displayed such deranged viciousness, but not the gladiator pit mass attacks we see today.
This is not advocacy; it is piranha feeding on one another.
What makes such behavior even more tragic is that it is happening in a glass house. Outsiders [including health department people, doctors and the public] see this stuff.
Such behavior feeds directly into the hands of those who proclaim a psychiatric etiology to CFS. So too does it discourage many people from wanting to have anything to do with CFS. In the end the people partaking in such behavior are hurting themselves and all the innocent CFS patients.
I must admit I’d be fascinated in seeing a social psychologist’s do a psychosocial study of what is going on.
To make the landscape even more damaging, we’re seeing some people waving a manipulative banner of supposed “unity,” when they actually repeatedly reveal a stance of you have to do it our way or you’re out. We then hear the decree that “independent advocates are dangerous” and that some need to be “punished” because they may not agree with some positions of the supposed unifiers.
This too is not advocacy.
It is tactics inspired by some whose first priority seems to be expanding their bandwidth, and/or building their organization’s or Internet prominence.
Real advocacy is patients helping patients, patients empowering patients through the sharing of medical information, patients interacting with doctors and the government in an effort to bring positive changes, and patients caring about and helping patients. These kinds of real advocacy quietly transpire far more behind the scenes far than upon the public stage. They’re the true heart and soul of CFS advocacy and the best of the CFS patient sector.
Over the past 22 years of CFS advocacy I’ve not seen the on-line patient activist sector so contentiously fractured or nasty.
All these types of behavior are akin to piranha feeding on one another for the sake of a little bandwidth. It’s sure not for or serving the global CFS patient sector. And it’s sure not moving CFS advocacy ahead.
Many years ago I spoke with a high level health department official who had previously worked closely with the early AIDS movement, a movement that was very divided, contentious and militant. I was told that even in comparison to that arena, it didn’t come close to the level of venomous meanness and infighting happening in the CFS advocacy arena.
I’m glad that person isn’t around today to see what is transpiring, but many people are observing, and their doing so is hurting us.
There are lots of wonderful people in the CFS sector. There are compassionate people. There are people who believe in civility, truth, objectivity, and personal accountability. There are people who want to help others.
It’s time for people to say enough is enough, to take back the Internet and their advocacy movement by not supporting those individuals, organizations or web sites that are hurting us in the supposed name of CFS advocacy.
It is time for responsible voices to be speaking for all those who can not speak for themselves.
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