markmc20001
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Saw this comment from a patient in another thread. It is a common response from us. Why in the heck do the media keep getting it wrong? Our chronic fatigue instead of ME, or news videos clips with Nancy Sneiderman describing our illness using 80+ year old great grandmothers running on the beach? Had some random thoughts. See what you think.
I would like to suggest blending in a bit more offensive at some point.(if none is being done already) For instance, calling the journals on their double standard. Putting WPI and their paper under unlimited scrutiny, while these contamination papers and organizations go without the same level of scrutiny?
Also, we need to find good sources of media and journalists that will support our cause. Contact legitimate sources of media NOT CO-OPTED by big Pharma to help post our offensive. For instance maybe some of these website would be helpful: Try PLoS, AlterNET.org, Nakedcapitalism, Huffington post?, Mindy Kiteh, Dillan Raddigan at MSNBC, Glenn Greenwald, DailyBail.com, Patient advocate. Use facebook. With the internet, there are some legitimate sources of journalism popping up that may understand our plight. Maybe only PLoS journal would truely understand our plight the best. But everybody knows somebody with cancer or autism or CFS/ME.
Get creative and launch some offensive attacks and anti-spin. I actually had a major success in getting YVES of nakedcapitalism.com to post Judy M response to the Science request to retract.
Writing a TV station or newspaper about a hit job they were paid to do by big pharma is defensive, and may not be as effective as an offensive response in the PLoS journal for instance.
Just rambling suggestion.
It might not be an accident the media is calling it chronic fatigue. Does a pretty good job of marginalizing us right? They spend big bucks on that. Clear from the cartoons, news stories, psychobabble, and the rest of it. No doubt somebody is helping them understand chronic fatigue is a better term than ME. From their perspective!Why can't the NY Times say "Chronic Fatigue Syndrome" or CFS or better yet ME/CFS? Is this so hard to get right? What we have is not "chronic fatigue". Edit: Ok, now that i read the entire article, i see that they only said "chronic fatigue" once, towards the end, but i still think it should never be called like this at all.
Since the CAA says they're not doing advocacy anymore, could the Coalition 4 ME/CFS explain this issue to those people please? I think it's very necessary, what people read in those newspapers impacts wheter they see how serious the problem is or not.
Cort or Mark if you read this, could you discuss this problem with Coalition 4 ME/CFS? I think it's important a group like yours tries to talk with the media, so they finally get the name right.
I would like to suggest blending in a bit more offensive at some point.(if none is being done already) For instance, calling the journals on their double standard. Putting WPI and their paper under unlimited scrutiny, while these contamination papers and organizations go without the same level of scrutiny?
Also, we need to find good sources of media and journalists that will support our cause. Contact legitimate sources of media NOT CO-OPTED by big Pharma to help post our offensive. For instance maybe some of these website would be helpful: Try PLoS, AlterNET.org, Nakedcapitalism, Huffington post?, Mindy Kiteh, Dillan Raddigan at MSNBC, Glenn Greenwald, DailyBail.com, Patient advocate. Use facebook. With the internet, there are some legitimate sources of journalism popping up that may understand our plight. Maybe only PLoS journal would truely understand our plight the best. But everybody knows somebody with cancer or autism or CFS/ME.
Get creative and launch some offensive attacks and anti-spin. I actually had a major success in getting YVES of nakedcapitalism.com to post Judy M response to the Science request to retract.
Writing a TV station or newspaper about a hit job they were paid to do by big pharma is defensive, and may not be as effective as an offensive response in the PLoS journal for instance.
Just rambling suggestion.