posted
Yay! They said they're "very interested" in writing this article. I had sent them several links regarding the controversy regarding Lyme Disease, which they had checked out. I'm meeting with them tomorrow afternoon. Wish me luck!
Any suggestions on things I should say?
Posts: 37 | From Jamestown, NY | Registered: Oct 2005
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I'd suggest that you only cover this aspect with the reporters, and NO OTHER aspect, since All other aspects have been covered ad infinitum, ad nauseum in the media.
The word lyme has been on the tip of the public's tongue for at least a decade.
Were a marketing researcher in a shopping mall to select a randomly chosen person to complete a questionaire about the obvious aspects of lyme disease,and other tick-borne diseases, they would score between 85 and 97% of the questions correctly.
However, if asked about the fraudulance with respect to the diagnosis and treatment of lyme disease,the randomly chosen shopper interviewed would score between 4% and 20% of the questions-un-cynically--correctly.
While i,myself, would be delighted/flattered to be asked about lyme, and if so, other TBDs, I'd nonetheless decline such a solicitation for an interview for the reasons proferred in the link provided in the previous paragraph.
this should be a good test to see if the reporters are serious investigators, or, just looking for a quick story to justify their "worth" to their employer as being "very productive" employees. Do they really want to do investigative journalism for which they are eminently qualified, and receive a prestigous prize, along with the attendent salary increase, and future employment prospects?
I suggest that, you suggest to them, that they can increase their esteem, and future employment prospects if they did a real job, and do this story, instead of playing "safe," by writing the usual, "insomnia-curing" piece on lyme, and, instead go for some prize for the newspaper. Then, they can go to the "boss" with real justification for why they need a raise!
Posts: 2708 | Registered: Feb 2005
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posted
Sorry, I can't agree with pq on this. Think this is more than the average reporter for a local paper is going to be able to deal with. The facts may be correct, but it isn't what they are looking for, and will run like hares if you give em this link.
Instead, maybe go to this website and print out some of the q and a, pick several important ones to cover. If they want more, good, tell em your story and troubles getting diagnosed. Don't use doc names or those of other patients without permission. Would be good to give them links like LDA, LDF, and ILADS for more info for story and for reader reference.
Here is the url for the basics booklet with q and a:
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Hey, Ma!
First, I applaud your effort to get out the truth about Lyme; I really do think it's commendable.
As a journalist who's written for a variety of national publications, I'm concerned about the type of article this reporter is interested in writing.
Are you going to be one of several people interviewed or is the story primarily about you? It's okay for you to ask that. You mentioned this was your local paper; is it a weekly or a daily? Sometimes the smaller papers (at this point anyway) seem much more willing to tell this story than any of the larger publications.
Lou's right, I think: trying to plunge a reporter into the thicket of this disease, its complications and the medical community split will cause most to run for the hills. If they're writing a basic feature story, they may not be equipped to deal with all that.
Even so, I think there's a place for your story.
I disagree with pq about the public awareness of Lyme. Even in this Lyme endemic state, I find an incredible lack of knowledge about the scope of the disease (much less the controversy surrounding it). In that regard, there's much to be gained from simply telling your story...especially if it's like so many others here -- a maze of specialists and misdiagnoses.
Talking about your own experiences keeps things clear, without you having to wade into potentially alienating territory. Just telling your story will help make readers aware of this condition, which is always a good thing.
Too, if the reporter then wants to follow up some of the threads you introduce (and hopefully he/ she will), that can happen.
Find out the reporter's deadline and also get a contact phone number. Sometimes things might occur to you after an interview that you might not have thought of when the tape recorder was running.
If you've got any specific questions or concerns, feel free to send me a pm. I'll do my best to give you information that can help you.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
I believe the article will be about Lyme Disease, it's existance in our area, how many people with fibromyalgia actually have Lyme Disease, and about the problems with the tests for diagnosing, and the controversy regarding the appropriate treatment.
They'll be asking me about my personal experience having Lyme Disease.
This is a daily newspaper, for a city of approximately 35,000 people.
Posts: 37 | From Jamestown, NY | Registered: Oct 2005
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posted
o.k., i'm sure there are pockets of mass ignorance in the populace, so a small, in-depth feature story on a singular case, difficulty getting correct diagnosis, and treatments,bespeckled with statistics, and epidemiology would serve to increase the public's awareness.
I don't know what the writers' goal is, the approach they want to take, whether to do a feature story focusing on one city, doing a singular case history in depth, or a "magnum opus."
Whatever the writers' style, i'd refer them to http://www.actionlyme.org for the ultimate cause of why a given person affected by lyme disease, and other insect-borne infections, has seen an average of between 10 to 30 doctors before having been correctly diagnosed and treated. They can mull it over...
Posts: 2708 | Registered: Feb 2005
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posted
Well, I met with the journalist. The article is going to be in the paper next week. She's new to the paper, so I don't know her style.
Basically, we sat and talked about my personal experience, and a few tidbits of facts. I mentioned several sites she should check out, and gave her the names of others in our area who have been affected by Lyme Disease.
She said she had been researching all day. She of course came across this site, too.
Tomorrow I'm going to call the doctor I saw a couple weeks ago, and see if the results came in, and if and when he'll start me on treatment. I'm also going to talk to the nurse at his office, as she had Lyme Disease several years ago, and mention that she should contact the newspaper. I'm also going to see if she'd be interested in helping me start a Lyme Disease/Fibromyalgia/CFS support group in our area... especially since she's an RN and has experienced Lyme Disease.
I'll let you all know how it goes.
Posts: 37 | From Jamestown, NY | Registered: Oct 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
That all sounds good, Ma!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
...looks real good! the fact that she is an R.N. is a plus, because she can quickly get through the many, and often steep learning-curves of testing, diagnoses, treatment,and the inherent ambiguities, therein, that would be o/w overwhelming to a non-nursing/medical writer.
Posts: 2708 | Registered: Feb 2005
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posted
Please, please tell them how most doctors are IDIOTS and so many people are misdiagnosed or ignored. Or how about how insurance companies refuse treatment. Or how about how doctors refuse to listen to their patients and refuse to treat people. How people with lymes have to beg for anitbiotics and are treated as though we were begging for pain pills.The medcial community as a whole are IDIOTS!!!!!!!!!
Posts: 3 | From franklin, NJ | Registered: Oct 2005
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the fact that she is an R.N. is a plus, because she can quickly get through the many, and often steep learning-curves of testing, diagnoses, treatment,and the inherent ambiguities, therein, that would be o/w overwhelming to a non-nursing/medical writer.
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