posted
I was wondering... what if we wrote a petition of sorts, and sent it to the NEJM demanding that the Feder article be retracted on account of it being scientifically unsound, and also for neglecting to disclose the lawsuit as a "conflict of interest"?
I know they wouldn't really retract it, but if we had 20K signatures, and if we included small blurbs from some signatories saying how they had culture positive EMs many years after the tick bite or that they were able to get out of their wheelchairs after antibiotic therapy etc.
I was thinking that the petition could be drafted to point out many of the studies that these guys ignored, and the point could be made that it is highly irresponsible journalism on the part of the NEJM - heck, we could even threaten to sue them.
Why not? Editors of big fancy journals are only people. Or perhaps we could bring political pressure to bear on NEJM via a petition to a Massachusetts senator?
That article is doing a lot of damage. A friend of mine just today was given that article in his neurologist's office and then told that he had to stop his antibiotics. It's getting out of hand...
Just had to blow off some steam. We really need to at least TRY to do something. Perhaps we could at least insist that a fair rebuttal be printed.
posted
I think it's a good idea, especially including those little blurbs from us. So include the Lyme docs and scientists too. Maybe think about who could originate a petition like this -- ie should it be the patients or the Lyme-treating medical folks?
Posts: 13117 | From San Francisco | Registered: May 2006
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daise
Unregistered
posted
Robin123,
Hi!
I say, the patients--because we can't ask the LLMD's. Their necks are at the brink, as it is.
Besides, we'd be giving IDSA a list of LLMD's--we'd make IDSA's work easy for them.
posted
Yes, I think it has to come from the patients, perhaps with some language from LDA but I guess it should come from the patients.
So, do people think we should send a petition to a Mass. Senator, or to the editors of NEJM? Or hey... what about sending a copy to BOTH? Can't hurt. We have to make noise.
If I actually drafted the darn thing, do you think we could get enough signatures to make it matter? Or is it better to not make waves and just leave the political stuff to the LDA?
Anyone have opinions on that? Cuz I will draft a petition...
Posts: 194 | Registered: Jul 2005
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daise
Unregistered
posted
BorreliaBrain,
Since NEJM knows darn well what they did and we have no medical training, I think that cuts us out from responding to NEJM. I could be wrong, but that's my current thought.
What about a peition to the CDC? Afterall, the CDC has a very public face. They are supposed to warn the public of epidemics--and they are not doing that with Lyme. You might see the idea on the thread under activism called, Do you know a lawyer with chronic Lyme? There are various ideas on that thread. We're still gathering ideas.
posted
howdy, just to shed some light on the above post/replies, i offer you the following:
on the 2 LYME petitions we have:
1. Lynne started hers first to go to congress, and has 5,770 to date;; just posted stats in the other post about a NEW petition. this was started 13-14 months ago, and it's taken THIS LONG to get less than 6,000 signatures and we were sending this to our relatives/friends/co-workers, etc.
2. LDA petition started about 1 month after Lynne's now has 30,555 or something like that; again see the stats in other post.
you would not believe how hard we worked to get 2-25,000; LDA thouht we could get that in 1-2 months max. SURPRISE, WE COULDN'T!
so with what the proposal was of 10,000 signatures; it's going to take us about 1 full year to do that.
just wanted to pass along some hard facts as we worked our butts off on those 2! that's why i typed in lower case now adding 200 names to EACH of the petitions!! carpal tunnel acting up again for months on end!
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
DR. S. P. in Wilton CT has developed a comprehensive literature review, many many studies that refute Feder's article, and has publicly debated Feder face to face armed with his information.
He could lead this, or be an important part of it! Please contact him or PM me for more details on this incredible work of research done by Dr P.
It contains all the research and facts needed to do this!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
We have a group wanting to get together and work on this and offshoots of it:
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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