Topic: Tin Cup: please document this - who wrote it?
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Although the revisions suggested by the Panel were not the ones that we hoped for... we never thought they would be...
The Panel DID recommend over 25 revisions be made... indicating there were many flaws in the 2006 Guidelines and much room for improvement.
This leaves the IDSA in the same WRONG WRONG WRONG boat as always.
Bottom line- They were investigated for illegal practices, found guilty and their Guidelines were shot full of holes by their own people.
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
Hey Ann-OH...
I'm the guilty one. This is one of the times I did not totally agree with everyone else and saw the results in a different light.
I assisted in preparing the other information that was distributed (hard to do when you are not totally on board) but they needed assistance at the time and were stuck with me.
But.... I also wanted folks to take a closer look at what was actually reported, so I wrote the above press release after the other stuff went out.
In my opinion, the IDSA COULDN'T admit any changes were needed in the current guidelines... it would have put that final nail in their coffin if they had.
And their spin on it (to reduce damages to themselves) was well thought out ... but not at all acceptable or true. It will fool those who don't take a closer look and they may try to paint themselves to be less of a skunk that they are... but bottom line.. if it looks like a skunk, smells like a skunk...
Yeah, it is one.
First of all, they have to redo the guidelines anyway... they are getting ready to be pulled off the National Clearing House next year... so that was a good ploy or tactic for them to take for saving their butts.
And with that being the case, they realized they COULD make recommendations for changes the next time around and skirt te issues.
That would get them out of hot water for the past guidelines, make them look like there could be things done to improve them (after tons of documentation proved them wrong), but not make them liable for the damage the current Guideline issue has caused.
Do I think those changes will help us? Not one bit. It is in their own favor all the way.
Do I think it was a fair process or that their was an accurate report in the end... not at all.
Do I think they are still disgusting sylmes? You bet I do.
posted
So who was this a press release for?
Posts: 157 | From connecticut | Registered: Feb 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey TG...
How about that race today? MY GOODNESS! That was so much fun!!! The whole thing was exciting!!
Not sure I understand your question, so not trying to sound stupid here .. but a press release is usually sent to the press (newspapers, media) and to those who await updates on what is happening.
And in this case.. it might help those (sick patients and others with no time to spare) who don't want to wade through and analyze the entire 65 pages of "%^&^$##" that was in the final Panel report.
This one was sent to groups, local media (why it was kept focused and included our states issues/relations- Hopkins, cost of tests, etc.) and individuals.
I haven't been watching the races so far this season, but I did hear about the blow up between Gordon and Johnson.
What I am trying to determine is did you send this press release on your own, or did you send it as a representative for a particular advocacy group. I am just trying to understand where everyone stands on this, that's all. Thanks in advance for the clarification. TG
Posts: 157 | From connecticut | Registered: Feb 2007
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
[ 05-04-2010, 01:50 AM: Message edited by: OptiMisTick ]
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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posted
Wow, back off Optimistick, you might think about changing that screen name...I don't need lectures about what advocacy groups are doing for us "lymies". Actually, at this point, it's not looking to good from where I sit.
This is exactly why Lyme advocacy has the rep it has, the infighting is ridiculous. I was just asking a question and wanted clarification.
Good luck with all your efforts!
Posts: 157 | From connecticut | Registered: Feb 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sorry TG... and I am speaking for OMT.. and I really shouldn't... but in MY opinion..
Optimistic is so use to those working on projects being beaten to death over every little thing we do (all wrong in some folks eyes) that she was trying to be sure another ruckus.. which distracts us from our work... doesn't get started here.
I don't think at all it was personal. Please know we are all trying and exhausted and no harm was meant.
Plus.. of all the people I know.. she is the one who is the most full of ...
FACTS... (hehehe)
And has them all at her fingertips at any given moment. It is unbelievable what she can do.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
To answer your question.. or to try...
I help with other groups press releases as needed, and quite often. I'm one of the few who are up late who can edit and research... making me "involved" by default. HA!
But I do want to make it clear that this press release was NOT sent out by the other groups across the country ... it was just another one I wrote .... like the others that have gone out over the years from Maryland. See below.
I do agree with the LDA and CALDA's position -the IDSA Review Panel decision sucks (my words, not theirs).
And do note- in Maryland we have LDA affiliates (I am NOT one)... and some non-affiliated groups who work together with other Maryland groups, and who work with groups outside Maryland and with the LDA and its affiliates on many projects.
If I send out an LDA, CALDA or another groups press release it is highly unlikely to be printed in a Maryland paper because they are not located in Maryland.
And many patients who are not online are waiting for news here and get it from the local papers.
Most papers only want submissions that have a local/state connection (NJ and CA are too far away)... or else they hit the trash can faster than you can say Kevin Harvick loves Jamie McMurray.
Besides, no sense in all of us sending out the same exact message... especially when we can expand on each others work and get more facts out there.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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