LymeInfo's "Lyme Files" are gone

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Martian
Posts: 1944
Joined: Thu 26 Jul 2007 18:29
Location: Friesland, the Netherlands

LymeInfo's "Lyme Files" are gone

Post by Martian » Thu 28 Aug 2014 3:17

For your information and for the record:


For many years, LymeInfo.net had very nice documents (dubbed "Lyme Files") on their site that consisted of thorough compilations of scientific publications on several topics. The compilations showed quotes from the abstracts and the full text articles. However, for unexplained reasons, the author of the files no longer wishes to share them with the public.


Pages still show the description of the files:

Source: http://www.lymeinfo.net/
Medical Literature Summaries:

Highly Informative downloadable summaries of peer-reviewed, scientific literature. The topics covered include: Lyme disease symptoms, seronegativity (negative blood tests), persistent infection despite treatment, and extensive data on the cystic form of the Lyme disease bacterium. See: Lyme Disease Files.

Source: http://www.lymeinfo.net/medical.html
LYME DISEASE MEDICAL LITERATURE

A review of the medical literature reveals the many complexities of the Lyme disease spirochete, Borrelia burgdorferi.


Lyme Disease is a multi-system illness. The spirochete that causes Lyme has been found in all areas of the human body including, but not limited to, the brain, blood, organs and bone marrow. In the past its close cousin, Syphilis, was dubbed "The Great Imitator" because it has these same properties. Today, Lyme Disease is "The New Great Imitator" for it has the ability to mimic a multitude of illnesses. If the infection is left uncontrolled it can do a great deal of damage to the body. The results of this damage are often mistaken for that of other disease processes at work due to the overwhelming lack of knowledge and understanding of this disease by the general medical community. The widespread symptoms caused by Lyme are documented in the symptoms file.

Although the persistence of Lyme disease is the cause of much controversy, the scientific literature at this website reveals that Lyme disease is in fact known to persist following antibiotic treatment. The summaries of peer-reviewed medical literature further help to understand WHY the immune system and/or antibiotics often fail to destroy the bacteria, and why certain patients relapse when treatment is discontinued. The ability of Bb to transform to & form resistant coccoid forms provides the scientific explanation. It also explains a number of other "mysteries" that the prevailing paradigm of the disease does not, namely: latency, seronegativity, and the waxing & waning nature of Lyme symptoms.

The topics covered in the medical literature summaries at this website include: documented symptoms of Lyme disease, persistent infection despite antibiotic treatment, seronegative Lyme disease, and an extensive collection of photographs and quotations on the cystic form of the Lyme disease bacterium.

SEE HERE:
IMPORTANT MEDICAL LITERATURE

But the files are gone:

Source: http://www.lymeinfo.net/lymefiles.html
LYME DISEASE MEDICAL LITERATURE SUMMARIES

We're sorry! The author of these files, Joanne R., no longer wishes to share them with the public. LymeInfo does not understand her change of heart after so many years and would like to be able to provide her contact info for any questions about these files. However, she has requested that her email not be provided, and as such LymeInfo will respect those wishes. LymeInfo does not have any additional info. Sorry for any inconvenience!
Data says that the page was last edited on Friday 15 August 2014 1:39:47 CET.

#weird

Camp Other
Posts: 996
Joined: Wed 2 Mar 2011 4:32
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Re: LymeInfo's "Lyme Files" are gone

Post by Camp Other » Thu 28 Aug 2014 4:57

Thanks for pointing this out, Martian. I did check out the link and yes, it appears that several pages' worth of pdf files have been removed from the website by the original owner/compiler of the abstracts listed. I wasn't aware until now that someone other than the site owner had put those files online - I guess I assumed somehow one person put the site together, based on what I knew about it. I assumed wrong, it would appear.

I am quite certain any of a number of other Lyme disease patients and advocates have a copy of those pdf files on their own computers, so they are still in circulation out there even if they are not on the original website. But this will probably disappoint a number of patients and advocates who had been referring to those files in comments to news articles online and in debates with other people about chronic Lyme disease and Lyme disease in general.

I have to wonder why they were requested to be removed by the owner, per se, and not the site owner/administrator. The first most obvious reason I could see for removing it may be that some of those abstracts were printed by Elsevier or another major journal publishing company that does not even allow free sharing of abstracts online. (Yes, that's right: Even though researchers have a tradition of sharing abstracts with each other openly, some publishing companies consider putting just a mere abstract online elsewhere to be a violation of copyright.)

I had always thought such limitation is a major set back for researchers who want to share their work and for students and patients who want to share information and point people to papers, explaining why that specific paper is worth a closer look. But as it turns out, even our useful tool, PubMed, has certain rights to display those abstracts that the average person does not.

I would like to think that under fair use, sharing an abstract would be considered acceptable for educational non-profit purposes. But the more I began to investigate it, I discovered there is a gray area in how fair use is handled and how it is handled very much depends on the company and/or individual approaching a party which/who is sharing their work.

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ChronicLyme19
Posts: 564
Joined: Mon 11 Aug 2014 17:42
Location: NY, USA

Re: LymeInfo's "Lyme Files" are gone

Post by ChronicLyme19 » Thu 28 Aug 2014 20:00

(Yes, that's right: Even though researchers have a tradition of sharing abstracts with each other openly, some publishing companies consider putting just a mere abstract online elsewhere to be a violation of copyright.)
My best guess is it had to do with what Camp Other said.

Maybe some of use that still have the files, could just list it down to the publication titles? Would there be anything wrong with that? Then maybe someone could in their own words make description of what the work entails.

Sounds like you could set something up on a google doc for something like that. You could have a running list of papers published on Lyme. Even without the abstracts that could be helpful.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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