For Muffin & everyone - what are we doing & what are we doing next.

V99

Senior Member
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Rrrr great idea for a protest.
It would be great if we could get lots of countries involved. Everyone should also be holding a sign, or piece of paper, to say what this is for. How about "CFIDS & ME fighting back", or whatever name is preferred in each country.

Frank Positive action sounds good.
A few more suggestions:'Fight back', 'Education on CFIDS & ME', 'Cure CFIDS & ME', 'Fight for CFIDS & ME', 'Time to tackle CFIDS & ME', 'Don't wait to get CFIDS & ME', 'Attack CFIDS & ME', 'Fix CFIDS & ME'. More suggestions are needed, as they help to form better ones.
 

muffin

Senior Member
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Hillary Johnson's brilliant idea: The CFS Alliance Against Defamation

Actually, at the very bottom of the Trine-Chicago Tribune story on www.oslersweb.com, Hillary Johnson came up with a great idea. I think most people didn't get a chance to read it since it was at the very bottom. She suggests "The CFS Alliance Against Defamation". Read what she wrote about this idea of herw below. She is dead on, as usual. I do think we have been doing some of this, but we need to do more. We need a very concerted and hard hitting attack method. Hence getting the EXPERTS FILE really filled out by our resident smart people so that we can quickly grab, copy/paste and HIT THEM HARD AND FAST. See Hillary Johnson's idea below:

June 21, 2010 5:55 PM EDT
Thomas Fields (thfields@tribune.com)said that I was the only person to suggest that Trine be moved back to the FOOD Section. So, those reading this blog need to send Mr. Fields an email telling hiim how unhappy they were with Trine's reporting on a very critical issue to millions of disabled people.
He and I have had some back and forth emails and he needs to hear from ALL OF YOU and not just fighting via email with me. PLEASE EMAIL HIM AND TELL HIM THAT TSOUDEROS DID A GREAT INJUSTICE TO MILLIONS OF SICK PEOPLE. This schmoe needs to hear from those she has damaged.


June 21, 2010 6:13 PM EDT
This article is not the heart of the problem, but rather an example of a missed opportunity. It's a shame it was widely distributed. The reporter approached her story with an apparent bias and insufficient information. These kinds of dificulties may continue, but they stem from years of malfeasance and scientific failure at the federal health agencies, CDC and NIH, combined with the problem that patients are simply too sick to advocate on their own behalf. My suggestion? Use what energy you have to send letters and e-mail to your representatives in Congress, cc'd to the executives at these agencies. There will be more reporters and more stories. Journalists generally try to get the story right. Unfortunately, there is a great deal of mis- and disinformation in the public domain about "cfs." Ignorance of the political history of this disease is another barrier to good reporting. Critically, reporters need, first, open minds, and following that, good information from legislators, scientists--whether academic or inside health agencies--and public health officials who grasp the true outlines of the problem and are willing to talk about it. Right now, very few are. Better reporting will result when journalists begin to understand where the real fault lines lay. At this juncture, with so much promise ahead, it's disappointing to feel as if the world is turning backward and patience is running thin. If a letter is in order, I suspect it's better sent to your rep in congress. That's advocacy. And thanks for the many comments here.

PS--I'm still thinking about Sharon's proposal. Maybe what CFS needs most what most minority groups have: an alliance against defamation. The CFS Alliance Against Defamation would be reactive and proactive. It would react against arguments like Trine's and it would be proactive by meeting with editors. And I don't mean a new role for the CAA. I mean the CFS Alliance Against Defamation. Under this paradigm, the press is closely monitored; when patients, or the disease, or the science surrounding it--including the scientists who are working in the field--are misrepresented, ignored, or held up to ridicule, the journalists and equally important, their editors, hear about it, every time. There need be no hand-wringing or despair, but an alliance of people who react swiftly to correct the misreprentations and who work persuasively to explain that defamation has occurred and why. I'm not talking about write in campaigns, but a functioning body. After twenty-five years, maybe it's time to start correcting misconceptions and faulty portrayals of this disease in the media in an organized, deliberate fashion.
- Hillary Johnson
June 21, 2010 8:37 PM EDT
 

Rafael

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Well, somebody had to bump this thread.... if we want to talk about Trine at the Chicago Tribune..... We could pick up from her last drive-by shooting. ... and the proposed antidote.
Or maybe no-one wants to waste their time trying to correct the flat-earth society anymore ... if the cover is going to be completely blown off XMRV any day now, regardless.