savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Hi all my lyme friends,
After reading the article in Newsday a few days ago, I blasted the writer claiming that she failed to represent both sides of the story. Here was my response from her:
Thank you. I do believe that I laid out both sides of the controvery. And remember, I did speak to a lyme literate doctor: Dr. Brian Fallon. I wish you well.
posted
I think it might work better to lay out your reasons why you disagree with a journalist, rather than a blast. Maybe that is what you did, and didn't really mean blast literally. Unless it is totally over the top, like the Forbes smear, which deserved a blast.
If a writer did honestly think they were getting the full story on both sides, then a blast will probably just get their back up and become prejudiced against that "side." And I also think that if you really want to be heard, a letter to the editor might get printed, whereas contacting the journalist will not get into print, unless a follow up story is planned.
Not meaning to criticize your activism. Everybody needs to be an activist. Good for you for taking the time to write.
Posts: 8430 | From Not available | Registered: Oct 2000
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
This is what I wrote.
If you are going to write an article on the treatment of lyme disease, and talk about both sides of the lyme argument, than you need both sides represented. I have been sick with this disease for years and was very upset at your article. You did not mention other co-infections that are very real here on Long Island and are making people sick from early spring through fall. You also failed to interview a lyme literate medical doctor. Maybe you should considering interviewing Dr. B top lyme disease expert who has treated people for years in East Hampton. There are so many facets to this disease and your article was filled with holes and inaccuracies. Maybe you should consider researching the whole truth before you publish another article.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
The inaccuracies came mostly from named sources, right? Those are the things to pounce on.
Liked your point about the coinfections. There are some good published journal articles to back that up, including one with a title something like "Ehrlichiosis under our noses and no one notices." And others that talk about the increase in babesiosis cases.
Posts: 8430 | From Not available | Registered: Oct 2000
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Gee Jamie, spoke to only 1 lyme literate doctor? That's how U covered both sides?
Does anyone remember that ABC News Reporter Siobhan who wanted to do a national story then scrubbed it? She said her editor said Lyme was an "old story."
Same "old" problem...
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
The lyme community has no idea how to befriend the press.
Think back to your prelyme days when you were healthy and active and suppose you met a lymie who looked good but claimed that in spite of months or years of antibiotics they had a bug that couldn't be killed etc. And then you looked at the medical literature--not being a scientist, doctor, or science reporter--just a layperson, or perhaps just a writer who writes about MANY different subjects--and saw a lot of controversy.
You are asked to do a story. You don't have weeks or months to study it in depth. The literature is very confusing if you spend a few hours.
You guys insult the press and expect them to befriend you.
They owe you nothing.
What you need to do is thank them for covering it, thank her for indicating that some people get chronically ill after a tickbite, and politely let her know that some folks consider it to be chronic persistent infection. Then give her the abstracts, all neat and in order with references. And then ask her if she someday covers the topic agian, say next summer, to perhaps consider this angle too.
Bashing a reporter will get you nowhere in fact it will make them less likely to follow your lead.
Posts: 2276 | From united states | Registered: Jun 2004
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Greatcod
Unregistered
posted
Exactly Babe. Bashing the reporter or the paper is extremely counterproductive. And consider, too, when dealing with Lyme, the "other side" is often represented by nationally known physicians who work out of famous universities and hospitals.The poor reporter is probably stuck with little time to get the story done, and no previous experience with the topic. I believe that our job is to keep the controversy alive in the media. We may be knowlegable victims, but it is the academics and professionals who get the final say on this. Overall though, no great harm done.
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
quote:Originally posted by oxygenbabe: The lyme community has no idea how to befriend the press.
02, I disagree with your subjective commment. Seems like the folks at Columbia & LDA have done a good job "befriending" the press. This all started because non MD people like "you guys" got fed up & did something about it.
I don't want the press to befriend me. Placating press is hit or miss. Just tell both sides of the story with accuracy & fairness. Nonetheless, the press don't fight battles, just report them. The "don't always believe what you read" credo also applies.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
First we have to overcome the "these Lymies are all nuts" syndrome. And admitted, everyone with Lyme has left a mark of this kind somewhere.
Even good sympathetic doctors who treat Lyme dutifully and know what it is all about - have a difficult time with the Lymie attitude. Mine has, and every other doctor I have met over the years will gently spell this out if you let him.
All you have to do is listen to this board around full moon time when the parasites are dancing!
Semi-kidding.
Take care.
P.S. Only let off "blasts" when you know for sure you are not in the middkle of a Lyme Rage. Oxygenbabe is so right.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
What about getting press releases ready to send to reporters/editors? Why not tip the tables in our favor?
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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bettyg
Unregistered
posted
kay, great idea! i like it.
i also emailed a long one to 1 of our des moines, iowa ace reporters, who happens to be from my area, and i grew up w/his dad/uncle, etc.
asked him to do a report about chronic lyme disease, mentioned controversy of 2 camps, dr. jones hearings, and latest one..wisc. llmd.
then i received an email from wisc. folks raising funds, etc. to support his upcoming legal funds, so forwarded that to him for some background as well in a future story.
i'm hoping he'll email me for contact and to pursue.
reminded him 1st holiday weekend: camping, hiking, playing in grass ... ticks everywhere and need to get info out there on prevention/dressing.
will see if i hear back etc; you bet i'll post any contact news!
june 1-30, i'll have my lyme display at public library with LDA handouts, some PHA newspapers, etc. i'll let you know how that goes plus i'm setting up for JULY 4 after parade .. education table; 2nd year for this.
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