Conflicting Papers on Hold as XMRV Frenzy Reaches New Heights

Good point Jenny. The ME-CFS groups do not want to be seen as a crazy mob, and it is easy to understand that research scientists are not very adept with handling the public. Any threatening letters or calls should not be tolerated, and do not help our cause.

However, comparisons to HIV (or any other research done prior to approximately 2000) would not have involved this very open communication of the internet. It has allowed people worldwide to communicate and get educated, which is a wonderful and beneficial phenomenon such as this great forum. It is time that researchers get off their high horse and come into the 21st century (especially ones working for the US government funded by taxpayers’ money).

It is too bad the US Office of Research Integrity (ORI) is within the DHHS, and is suppose to oversee the integrity of research.

Of course she couldn't defend us. She is Kim McCleary's mother-in-law, after all.

Erm- by the researcher, exaggeration much?

Angela, it is a hyperbole.

Tina

It was actually Frank Ruscetti who said this at the recent Tulane talk. He was having a gentle poke at the deluge of email he's been receiving. I think even Judy M. also mentioned that the volume of email was difficult to cope with sometimes, and she actually invited people to email her with questions, at one point. It's an index of how desperate this community is and how much hope the Science article has inspired.

I have not yet seen the article in which I was quoted, but I certainly did say that were angry. I have been ill for 27 years, my daughter, who turns 34 today, has been ill since she was 16, and I have seen the CDC insult us, fall asleep when we make presentations, make insulting remarks, and, a personal favorite, state that African Americans don't get CFS. If I weren't angry, I would be very foolish. Anyone who has been treated the way we've been treated would be angry. I did explain the reasons for our anger to the reporter. I explained that our mistrust of the medical system is similar to the way that African Americans felt after the Tuskeegee Experiment. I do feel sorry for good researchers who are caught in the middle between patients who are passionate about getting answers, including myself, and a system that has been completely neglectful of our needs. If there is someone here who isn't angry, I would love to know why you aren't.

um, epic pwned much?

The word they said you used to describe us, Wilhelmina, was "hysterical."

They have taken the worst possible quote from what you said. Not just a flood of emails, we are an educated involved community and Ruscetti's comment is almost affectionate, but a flood of abusive threatening emails.

It sounds like even fellow patients believe we are a community of bunny boilers. In the context of what McClure said it adds to the impression that scientists are liable to be attacked if they enter the field. With the awful example of the animal rights groups in front of them it could make a scientist think twice before researching our disease.

Anyone interviewed by a journalist must be careful to stress the very positive aspect of anything they say and to be careful that nothing could be quoted out of context. There are enough people out there ready and able to put us down, we must never give them ammunition.

It is difficult for sick people especially with our brain fog so maybe we could have a thread to discuss what we could say in response to questions.

I am sorry you have been put in a bad position Wilhelmina.

Mithriel

But it is not true! Even Reeves, SW, all our old adversaries are going strong.

Well - hyperbole IS exaggeration, used for comic effect. When it becomes a meme to persuade people to think a certain way - it becomes mere exaggeration. The quote seems to be used to portray CFS advocates as - well - what?

GHK, what's the source for this? I don't see Ms. Jenkins being quoted in the article as saying patients are hysterical.

In what has been quoted here, which, as far as I can see without seeing the article, the author used exactly one line from me which does not contain the word "hysterical" (I wouldn't have used that word for a few reasons) nor is anything about "a flood of emails" attributed to me (because I wouldn't know about them.) I see one line out of a fairly lengthy telephone interview. If there's a part of the article saying that I said these things, I would like to know. Have all of you seen the article? My understanding is that only Science subscribers have access. If you haven't seen it either, how is it possible to attribute things that are not written here to me?

Here is a key, speak in soundbites. News media doesn't quote more than two sentences of what you say as an answer to any question, and most often will quote only one sentence.

I have been on the other side. A news article about an issue involving my business, a newspaper under attack by the local mayor, was written about in another newspaper. I knew what kind of questions would likely be answered. I had some answers planned. One answer was so carefully written so as not to be accusatory but show the clear indication of a problem that it ended up being too long. And the news reporter cut out part of it. I knew better.

Speak in soundbites.

Tina

There is a 'meme' though, of the 'angry and moronic' CFS advocates who, too ill to do anything else, still manage in droves to harass poor scientists or lovely journalists such as Victor Lewis Smith. Ruscetti and Jenkins and the 'millions of CFSers contact my office' have managed to perpetuate that 'meme', whether or not they mean to.

Overly literal-minded, angry and defensive. Thanks sickofCFS. I'll take them as compliments, shall I? ; )

Very good advice. From my experience, I also would add, that if you are asked a question that you dont want to answer, don't answer it, just answer a question of your own. In other words, many reporters really are not listening to what you say, they are getting the next question ready. What they need is the sound bite.... This is esp true with TV and Radio.....

Bottom line, no matter what you are asked, get your own point out there in sound bites.

The subscription article is the free version, plus the extra two patient-related paragraphs that I posted here a few days ago:
http://www.forums.aboutmecfs.org/sh...ches-New-Heights&p=99303&viewfull=1#post99303

I agree with Wilhelmina - how could anyone not be angry? She let loose a blast at the CDC during the public hearings that made my hair stand up on the back of my neck. I actually asked for a copy of it - I wanted to put it in a blog - but I was told she did it off the cuff!

I think Were all angry and we all have many good reasons to be angry but I think we should be angry most at the bureaucrats who have refused to fund CFS research year after year after year. I can't think that it helped our cause to have Dr. McClure state on Science magazine, or whatever it was, that she'd received e-mails stating that she didn't know her ass from her elbow! That's gotta make researchers think a bit more about getting interested in CFS.

I agree that we do a very good job with researchers in our own community. I think, for the most part, that we're quite understanding of researchers different viewpoints - so long as they don't have a behavioral agenda but outside researchers don't know that - I imagine they see a comment like that and it makes them wonder.

Probably best to keep that in-house as much as possible however strongly we feel moved to dash off an email like that in a moment of anger

Hysterical? How about so deeply in a state of RAGE that I can't think straight. RAGE is the word and they can quote me on that one.

Anyone who puts themselves out int the public in any capacity is open to comments, emails, etc. McClure, et al, need to realize that when they put garbage out into the public domain people are going to get mad and tell them what they think. So deal with it. As for Reeves and the other "PERPS", nasty emails are the least of what is coming for them after this whole ugly situation comes out. Then it's prison and a ruined career - only a little bit of what they have coming for destroying the lives of millions of people in the US and worldwide for three decades.

Which brings me back again to emailing the heads of the Fed orgs, the media and anyone and everyone we can think of to bring this whole criminal situation into the public domain. Damaging research doesn't just affect us CFIDS/ME sick, but everyone and everyone should be mad as hell about it. And they will if we keep banging the drum and emailing and going public with everything we find out.