posted 04 January 2005 23:21               

These sites were deemed to be completely correct:

www.acponline.org = American College of Physicians
www.aldf.com = American Lyme Disease Foundation
www.cdc.gov
www.fda.gov
www.healingwell.com www.hopkins-arthritis.com
www.intelihealth.com
www.kidshealth.org
www.lymediseaseinformationcom = pfizer pamplet
www.webmd.com


These sites were deemed completely wrong:

www.igenex.com
www.iliads.org
www.lymediseaseassociationcom
www.lymenet.org
www.lymesite.com = Boston, MA site ?


The following sites were deemed accurate on only one or two items. I listed the ones that were consider accurate for each site:

www.lyme.org = Lyme Disease Foundation = Diagnosis and Serology
www.lymealliance.org = (has this site been taken down?) = tick bites and pregnancy
www.lymedisease.org = CA Lyme Disease Assoc. = Diagnosis and treatment
www.lymeinfo.net =other tests (did they completely ignore all the abstracts citing medical research???)



1: Pediatr Infect Dis J. 2004 Dec;23(12):1105-1108

Inaccurate Information About Lyme Disease on the Internet.

Cooper JD, Feder HM Jr.

From the *University of Connecticut Health Center, Farmington, CT; and daggerConnecticut Children's Medical Center, Hartford, CT.

OBJECTIVE:: Patients and families searching the Internet about Lyme disease may find conflicting information. Our purpose was to review the accuracy of information on Lyme disease easily available on the Internet. METHODS:: We used 15 search engines to find general information about Lyme disease. We found 251 Lyme disease websites, which we reviewed. Of these 251 websites, 19 gave general Lyme disease information and were analyzed. We evaluated the accuracy of information concerning 8 Lyme disease topics. RESULTS:: Ten of the 19 websites gave accurate information and 9 of the 19 websites provided inaccurate information. There were 8 websites with the word "Lyme" in the domain name, and 7 of the 8 sites gave inaccurate information. There were 2 ".gov" websites, and both gave accurate information. CONCLUSIONS:: Patients and families searching the Internet for medical information about Lyme disease may encounter inaccurate information.

PMID: 15626946 [PubMed - as supplied by publisher]

[This message has been edited by twoangie (edited 04 January 2005).]

posted 04 January 2005 23:45               

If these guys were allowed space in this journal to publish flawed studies, basically slandering the information contained on the sites that have been deemed unworthy by some moron "researcher" of their choosing...doesn't this mean that the journal that was fool enough to publish this information now is obligated to give the other party an opportunity to respond? After all, the journal has published negative information so I think that by law, the other parties, the injured parties, should be allowed to reply.

Frankly, if this is the true, then this could actually be an opportunity. In fact, 10 separate opportunities if each of these sites takes the time to carefully formulate replies...and space them out over a few months so the replies will be in several of their journals. I think that this could actually be used to the advantage of raising awareness with real, valid information backed by research and not rapid replies because each group knocked here has an opportunity to defend themselves and actually educate a lot of doctors. This may help prevent one or two kids from suffering when they should not have.

They should have thought a little harder before backing these groups into a corner that contains a door...!

posted 05 January 2005 00:46               

What do you think about all the groups that were knocked deserving equal time in the journal? I think it is only fair if the journal is discrediting them publically then they should have the opportunity to respond with a defense, right?

By the way, I'm very surprised that none of these groups were contacted and informed that they were to be included in this "research" by either the authors or the journal. Very surprised because I would believe there should have been some accountability.

posted 05 January 2005 09:22            

A study showing THIS would be eyeopening, but then most people are probably like me in not realizing the situation until faced with it personally.

And it isn't just Lyme. Bias, ignorance, corruption, conflicts of interest. All there in medical research (and diagnosis and treatment and journals).

posted 05 January 2005 10:12               

They will slither away without even a apology to all the people whos lives they impacted.

I guess Lida Mattman who won the Nobel Piece Prize (back when it was worth something) Is wrong too.!

I really hate mens sins Not only does it effect them but hey what hell share it with everyone else. I guess there oath meant nothing.

posted 05 January 2005 15:57               

I've personally received responses from several people but no one has suggested an alternate site. If anyone checks in here but is hesitant to post, you are more than welcome to email me. I may be working with Cheryl from Lymeinfo and we are debating on the best response but want to see what the rest of you are thinking before formulating a reply.

Thanks,

posted 06 January 2005 20:54            

Heart pounding! Looking over my shoulder in case I should see a Big Bird!!!

Skulking into the bowels of the earth to retrieve my car.

Sat and read the entire article (4 pages) and laughed myself silly. It was so BAD it was GOOD.

I am really proud of you folks, all of you in the LYme community. YOu have done one HELL of a job, so much so that you have scared the Dark Side so badly they ran out and set up the most ridiculous study going, to try to discredit certain folks and groups.

In union terms we would recognize that for what it is, which is an attempt at Blacklisting, that's all. With a little Union Busting thrown in there, trying to pit one faction against another, Good-Cop Bad Cop to a certain extent.

The level of misinformation was absolutely appalling.

I particularly liked their expertise - treating for 5 years. Stack that up against the more seasoned Lyme literate doctors, what do you think - think they know too much yet? Or are just parroting what they read from the tired old clinical researchers who never treat Lyme and related co-infections day in and day out.

It will be interesting to see what this journal will do about responses.

Be well all,

posted 07 January 2005 02:30               

Hey there,

Was there more to the article than what I sent? I'm confused. I copied about 10 pages of information after the abstract in that email. People are wanting more information but that's all I have. I don't have all the research articles which are listed. Since I obtained a copy of the article my links don't work. Even if they did, I would not be able to use them because I am not authorized. Sigh.

It is amusing how these men feel it is up to them to define Lyme Disease, to reduce this complex, living and ever-changing creature that is Borrelia to something simple and completely known. They think they have it corraled and boxed now, that there is very little more to know when the truth is, we've barely glanced the tip of the iceberg on this one.

It's also kinda funny how they keep using their old research to back their stance and ignore the fact that there is so much new stuff being published from around the world supporting the beliefs of ILADS and all the other Lyme groups affected by this miserable disease. Their research goes round in circles as they just pat each other on the backs and constantly reinforce what the others said in previous research. If they are not being paid off then it seems very obvious that they are the most insecure group of researchers out there. Do they ever break new ground? I'd think rarely because they don't want to do so, not only would it separate them from the herd, it would force them to go back and correct all their errors as well as appologize to everyone they disabled. Like that will ever happen, too many lawsuits

posted 07 January 2005 09:03            

The choice of sites was interesting, several sites were never intended to be a one-stop shopping site for Lyme disease medical information or treatment information, however other sites that ARE very factual were left out. It would seem deliberate.

posted 10 January 2005 20:33               

Are we ALL "wrong?"