Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
PRESS RELEASE
Lyme Disease Guidelines Review Panel Releases Final Report
April 23, 2010- A Review Panel for the Infectious Diseases Society of America (IDSA) Lyme Disease Guidelines announced this week, after more than a year of reviewing hundreds of pages of documents, that it was recommending many changes be made to the society's next revision of their controversial guidelines.
The review was to determine whether the guidelines should stay in place, be partially revised or fully rewritten. Over 25 suggestions for revisions were made by the eight member Panel.
The IDSA's restrictive guidelines, developed in 2006, stated that most cases of Lyme disease can be cured with a short course of antibiotics and had recommended, as insurers do, against expensive long-term antibiotic treatment.
With increasing numbers of Lyme patients each year becoming chronically ill and disabled from persistent and worsening symptoms, changes to the status-quo were desperately needed.
Health care professionals and support groups have complained for years that the guidelines were responsible for patients not being properly diagnosed and treated.
They also raised questions about the IDSA's biased process for developing their guidelines and their multiple conflicts-of-interests.
The Attorney General of CT agreed with the growing number of patients who had suffered as a result of chronic Lyme. After a lengthy investigation into the private medical society he stated,
"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.''
Although the Review Panel voted unanimously to change or alter many of the previous recommendations in the guidelines during the next update (2011), there are still many unanswered questions and points of contention to be worked out.
For example, the IDSA guideline authors rejected findings from studies completed outside of the USA, allowing the perpetuation of a monopoly-like hold on the science and in the process, deeming much credible research by others unacceptable.
The Review Panel, stacked with strong supporters of the IDSA (including its past president), did not positively address the unrealistic practice of dismissing science (national/international) that wasn't necessarily in agreement with their own.
The Review Panel also rejected evidence (case studies and case series) that cited the successful use of long-term antibiotics for treating other infections and voted to uphold the IDSA's theory that antibiotic use and the IV delivery method could still be risky or harmful to "Lyme" patients.
One Panel recommendation increased the length of treatment for a coinfection (Babesiosis) due to the high rate of relapses, called for more testing to be performed and suggested treatment continue for two weeks after all evidence of the tick borne infection had cleared.
A well-known sore spot for the IDSA had been their recommended Lyme testing methods and the requirement that patients have two positive tests before being treated.
Lyme tests cost Maryland patients over $3 million dollars each year; a waste considering a 2005 John Hopkins study found that 75% of patients were being missed using the IDSA recommended tests.
The Panel suggested the next guidelines include information about the problems associated with Lyme disease testing.
The national Lyme Disease Association (LDA) and its 35 affiliates expressed disappointment with the Review Panel decision on many points.
The organization voiced concerns early on over the bias in the Panel selection and the lack of treating physicians to balance the Panel.
The LDA also stated patients need adequate treatment and relief now and their members are urging the CT Attorney General to examine the process and take further action if it is warranted.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Although the revisions suggested by the Panel were not the ones that we hoped for and ones that would end the war and cure us all ...
And we never thought they would be...
The Panel DID recommend that over 25 revisions be made... indicating there were many flaws in the 2006 Guidelines and much room for improvement.
Ten of the recommended revisions had to do with the IDSA over stating their position and putting too much weight on their own recommendations- aka- acting too big for their own britches.
This report leaves the IDSA in the same WRONG WRONG WRONG boat as always.
Bottom line- They were investigated for illegal practices related to their own Guidelines, found guilty and their Guidelines were shot full of holes by their own people in a review process.
posted
So, I'm a little confused...not hard to do haha
Where can I see the 25 recommended revisions (are any of them significant?) and will those happen in 2011? thanks, Murph
Posts: 108 | From Raleigh, NC | Registered: Apr 2008
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
TC:
What's going on?
I thought the guidelines were ruled to stand as they were?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Murph and canbrave...
Bless your hearts. I saw your posts earlier and was just too tired to think how to explain all this .... BUT...
I just saw a post by Optimistic in General section (link below). She did an excellent job explaining it .... so if you don't mind I'll refer you to her post. It is near the bottom of the thread, so scroll down a bit.
You might say I am looking at the glass as 1/2 full at a time when the IDSA has made an attempt to step all over us again.
Even though they wiggled and Wormsered their way through this reputation damaging exposure (the AG's actions against them) ... and twisted their press releases to try to make themselves look good... and us look bad....
And we KNEW they would do this... and we knew they would NEVER admit they were wrong...
They KNOW they are wrong.
And the Panel did recommend changes be made to the next edition of the Guidelines. You sure can't tell though by their spin on it, can you?
Did you notice how they had all the press lined up PRIOR to making the announcement?
They were trying to get the spin on it in their favor to make themselves look good while they continue to wade through the muck they brought upon themselves.
If you still have questions after reading her post, hopefully I can get some sleep tonight and will be able to answer you sometime this weekend.
Optimistic is a long time activist and has been around since the dawn of time working hard to help the community. When I have had the opportunity to work with her over the years she always amazes me with her knowledge of Lyme and all the politics.
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
DO NOT GO GENTLE INTO THAT GOOD NIGHT By: Dylan Thomas
Do not go gentle into that good night, Old age should burn and rage at close of day; Rage, rage against the dying of the light. Though wise men at their end know dark is right, Because their words had forked no lightning they Do not go gentle into that good night.
Good men, the last wave by, crying how bright Their frail deeds might have danced in a green bay, Rage, rage against the dying of the light.
Wild men who caught and sang the sun in flight, And learn, too late, they grieved it on its way, Do not go gentle into that good night.
Grave men, near death, who see with blinding sight Blind eyes could blaze like meteors and be gay, Rage, rage against the dying of the light.
And you, my father, there on the sad height, Curse, bless me now with your fierce tears, I pray. Do not go gentle into that good night. Rage, rage against the dying of the light.
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Sometimes, I frankly just don't know what to do aside from contacting legistlators, lobying when local Assembly is in session, etc. If anyone can advise, would welcome the opportunity.
Folks, TLC (Turn the Corner) also welcomes volunteers.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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