Nan already posted the IDSA guidelines statement here, but wanted to add that we can rate the statement, as well as send any comments. I noticed that with each rating coming in, the approval % is dropping. So even if you see the disapproval column at max, which it is now, the percentage number is dropping with each person coming in to tell them it's a no-go for us.
Thanks for letting us know about this survey.
Posted by Dave6002 (Member # 9064) on :
See the results, 1 is poor,9 is excellent:
Rating Level: : 1.53/9
186 Total Ratings
Ratings
[ 08. September 2007, 02:48 PM: Message edited by: Dave6002 ]
Posted by bettyg (Member # 6147) on :
85; i just voted and it showed 79 votes!!
i added my 2 cents worth!
"we concluded that there is no evidence Borrelia burgdorferi persists chronically following 10 to 28 days of antibiotic therapy."
HOG WASH! We lyme patients are NOT given abx long enough nor strong enough! All need to be treated for 3-4 months to make sure ALL SYMPTOMS ARE GONE before stopping abx!
You are NOT the ones suffering from all the additional illnesses/symptoms caused from NOT ENOUGH ABX & LONG ENOUGH!
We wish you could walk in our shoes for 3-4 months with CHRONIC LYME, each of you would change your mind on how you treat LYME disease.
Also, CO-INFECTIONS NEED TO BE CHECKED AND TREATED FOR! We've heard of many IDSA docs NOT doing this!
All we CHRONIC LYME PATIENTS WANT IS TO GO INTO REMISSION, HAVE QUALITY OF LIFE WITH FAMILY, BE ABLE TO WORK!, AND BELIEVED THIS ILLNESS DOES EXIST AND IS NOT "ALL IN YOUR HEAD"!
Also, you commments about losing money, HOW ABOUT US? IT'S ALL OUT OF POCKET FOR APPTS/TREATMENTS/MEDS? That's NOT RIGHT losing homes/jobs/spouses! WORK TOGETHER! Posted by groovy2 (Member # 6304) on :
Hi All-
I just read the page- Sounds like they are crying Elephant tears-
I left this comment--
I told them that EveryOne connected to IDSA should Already be in prison and have 6 Mean and Angry Thugs as Roomies --
I figure put people that are Alike in One Cell- makes it more Coosseeey at night --
Then I also Thanked them for reminding me to write the Attorney General a -- Thank You-- email a few minutes ago-
I think it would be a good idea to write the AG --
Also include a link to the IDSA page where they are Bad Mouthing the AG -- I forgot to -Ouch
-- Jay --
Posted by Geneal (Member # 10375) on :
I rated and left a comment.
Basically said for the IDSA to get a clue. Chronic Lyme has documented research to support the diagnosis.
These are people's lives you are playing with and not a game of who's right, who's wrong.
Even though the IDSA is WRONG, WRONG, WRONG!
Shameful.
Hugs,
Geneal
Posted by Cobweb (Member # 10053) on :
That was fun! The number 1 (poor) was off the charts.
then in comments I quoted their How dare you statement -about the Attorney General challenging them and I put "It's about time !!!!"
Posted by susiecv (Member # 9702) on :
My two cents- Hope the ID I saw reads every comment!
IDSA policies are suspect and deserve to be investigated by all AGs.. "Sympathetic to frustrated patients" is certainly not the proper description of how LD sufferers are being treated.
IDSA needs to come to terms with the fact that they are standing behind a select group who do not believe in the Hippocratic Oath- great harm is being done by ignoring important reseach and denying treatment to so many.
If IDSA is truly unhappy that their guidelines are being used by insurance companies then they should CHANGE them!
I for one, would have expected to be treated by the IDSA memeber in my costly insurance network rather than pay out of pocket for a doctor who continues to educate himself on the realities of LD.
IDSA deserves to be challenged- it's not a "threat to the role of all professional societies" just the ones who warrant it!
Posted by Lymetoo (Member # 743) on :
How do you get to read the comments???
I posted "Go for it, Mr. Blumenthal!!! The IDSA is shameful!"
Posted by lymednva (Member # 9098) on :
Added my 2 cents! Here's the current rating of this article:
Rating Level: 1.55/9
162 Total Ratings
Posted by Vermont_Lymie (Member # 9780) on :
Thanks for letting us know! This is the most fun I have had today. I did not leave any comments though, still too angry over how an idsa luminary screwed up my life through non-treatment...
Posted by bettyg (Member # 6147) on :
you can vote ONCE ONLY unless you have other email addresses! were 219 there a little while ago when i checked!!
robin123's post has the link on it to go there and rate these stinkers! Posted by sometimesdilly (Member # 9982) on :
??? i just looked and the clicker said 188 replies, fewer than when you looked, Betty.
that's interesting.
tutu- i didn't see anywhere to click to read other's comments.
Posted by Cobweb (Member # 10053) on :
I don't get this final statement?
"However, we will resist any efforts to prevent the dissemination of objective, science-based recommendations."
Isn't that what they are doing with their narrow minds by discrediting or ignoring the increasing data on all things lyme?
I think they left out the word "OUR...recommendations"
Seems like the AG and the IDSA are on the same page-because that's exactly what the AG wants to do-make sure no one, not even the IDSA, prevent the dissemination of objective,science based recommendations.
I do hope there is not a manipulation in the tallying of votes! Posted by Lymetoo (Member # 743) on :
quote:Originally posted by sometimesdilly: tutu- i didn't see anywhere to click to read other's comments.
Darn!
Posted by mojo (Member # 9309) on :
That was the most fun I've had in a long time! Thanks for the link.
Posted by perplexed (Member # 1913) on :
I voted and put in my 2 cents briefly.
This medical organization makes me sick.
Hugs Perplexed Posted by Lymetoo (Member # 743) on :
Rating Level: : 1.43/9
256 Total Ratings
Posted by bettyg (Member # 6147) on :
266 NOW! yep, they were brave enough to see the low ratings, but not brave enough to let us read each others comments!!! too embarrased! Posted by Dave6002 (Member # 9064) on :
Yes, the rating will drop to 1, strongly demonstrating that the guideline is useless and harmful to the Lyme patients it should serve.
What a shame on IDSA.
Rating Level: 1.41/9
314 Total Ratings
Posted by Lymetoo (Member # 743) on :
314!!!! I would SO LOVE to read the comments!!!!!!!
Posted by Robin123 (Member # 9197) on :
I'm glad this was so much fun for everyone. Wish we could all vote again and drop them to a one, or how about subzero...
With 318 responses, the blue bar at the left is actually Very Tall. I too would love to see our comments.
I agree with Groovy about sending a big thank you to the AG.
Posted by robi (Member # 5547) on :
I'm with Lymetoo ........... I want to read the comments. I left a long one and now cannot find where it is.
robi
Posted by lymemomtooo (Member # 5396) on :
Ok, you know they are sick but not completely stupid. They must have their own gang also posting to help raise the %. So why blow that cover by letting us see their replies???
Perhaps the old strategy of phoning in on a regular basis would be a good idea. I know we did it for the hospitals once.
Posted by merrygirl (Member # 12041) on :
I voted as well. A big FAT 1. I wish there was a zero.
I also replied (among other things)that if they were to become sick they will use ILADS guidelines not there own. OOOOOOO it makes me so mad.... How do we get a thank you to the AG? MAybe we should send one letter and everyone "signs" it, much like a petition? Just a thought. It might be more powerful.
Posted by sometimesdilly (Member # 9982) on :
suggestion- why not suggest to the newsletter editor that comments should be posted- here's what i emailed to them:
dear sirs:
why don't you show the comments you solicit while asking for readers to rate the usefulness of an article in your online newsletter? I'm sure they would be fascinating, and it would be helpful for all readers to see others' critiques.
For example, the current article defending the ISDA's Lyme treatment guidelines is obviously being rated extremely poorly. Why is that? Being able to read the comments would likely shed some light.
----- dilly
Posted by Lymetoo (Member # 743) on :
For example, the current article defending the ISDA's Lyme treatment guidelines is obviously being rated extremely poorly. Why is that?
Posted by Dave6002 (Member # 9064) on :
quote:They must have their own gang also posting to help raise the %
You are right: a few 9 are form Steer, Worms, the author and their pups.
They thought their article would get excellent rating, so they set up the survey
Unfortunately to them, we all ated it the lowest at "1".
What a disgrace to the IDSA!!!
Posted by Lymetoo (Member # 743) on :
Posted by bettyg (Member # 6147) on :
382 replies right now; 1.36 - 9 !!! yippee!
now look at the graphic chart!
dilly or whoever, good note you sent tothem to release ALL COMMENTS written on this post!! Posted by AliG (Member # 9734) on :
That was beautiful, Dilly!
This was mine:
The problem is that the guidelines committee only examined scientific evidence which arrived at conclusions supporting their views. A tremendous amount of scientific evidence arriving at a different conclusion was ignored.
The practice of medicine is an Art based in Science. The "science" is often proven wrong. Those who are unwilling to listen to opposing arguements, remaining steadfastly dogmatic in their viewpoints, often end up looking like fools.
Please reconsider the scientific evidence which has been repeatedly offered by the ILADS group and refute it, if you can. If you are unable to refute it at least acknowledge that it exists and state your reasons for disagreeing with it.
You are alienating a greal deal of the American population, who are coming to question your motives, as your inflexibility in considering another viewpoint would make it seem as though you desire to eliminate the Vector-Borne Diseases from the infectious diseases you treat. Maybe it is best left to FPs who care.
I wonder if they promptly ignore responses to this survey, as well... Posted by AliG (Member # 9734) on :
quote:Originally posted by Cobweb:
I do hope there is not a manipulation in the tallying of votes!
Hey Cobby -
There's a manipulation of everything else, so why not the votes?!
They were probably just hoping we'd all figure it would be a waste of our time and they'd get a clean survey supporting them. No matter, it's their poll, they can just delete us and post whatever results they want.
I'll be curious to see what becomes of this. Posted by Michelle M (Member # 7200) on :
I also added a few choice comments, and am vexed not to be able to read the commentary.
Cowards.
Michelle
Posted by sometimesdilly (Member # 9982) on :
Being given a chance to rate an article, etc. is a pretty standard online feature used to increase interaction between readers and whatever website. There is no actual "vote" going on.
actually, i'd be surprised if anyone at the ISDA other than a webmaster's underling actually READS a single comment we've left.
so what. seems to me a a great idea to yell in their direction at every and any opportunity. Especially since our being vocal seems to be what annoys the Grand Arses of Lyme the very most.
and, we'll have given any innocent who stumbles into this particular pile of doo cause to wonder why the blantantly negative response?
dilly
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Michelle M: Cowards.
Rating Level: : 1.36/9
423 Total Ratings
Posted by bettyg (Member # 6147) on :
432 now; same ratio as tutu's above post.
now let's go for 500; on up to 1000 votes!!
we've got a few short of 13,000 members; 10,000 actual minus all the trolls deleted promptly.
anything is possible! keep the numbers going upward! Posted by Lymetoo (Member # 743) on :
up
Posted by Areneli (Member # 6740) on :
Bettyg,
Lymenet had 13000 users over the years since the beginning, but most of them are no longer here. They registered years ago and later went their own way but we keep their record here permanently.
I estimate that we have about 1400 active users at present time.
Posted by Robin123 (Member # 9197) on :
Good job, everyone! 446 votes, 1.34/9. Now we just have to find the long-gone folks and get them to vote... Posted by Areneli (Member # 6740) on :
If you have more than one browser in your computer you can vote with every single one.
Posted by merrygirl (Member # 12041) on :
My question is why they would open themselves up for this? Are they that stupid? Whatdid they think was going to happen? DUH.
Someone should print that page out and keep it for future use if needed. I don't know how.
It is embarrasing to the IDSA
Melissa
Posted by treepatrol (Member # 4117) on :
447 Total Ratings Posted by Lymetoo (Member # 743) on :
quote:Originally posted by merrygirl: It is embarrasing to the IDSA
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by merrygirl: Someone should print that page out and keep it for future use if needed. I don't know how.
How about bringing it HERE??!!
Volume 17 | Number 2 | Summer 2007 From the President: IDSA Stands Up For Lyme Disease Guidelines IDSA produces its practice guidelines with one goal in mind: to provide our members with the best possible advice about how to best take care of patients. We achieve that goal through a rigorous, transparent, evidence-based process. Once written by an expert panel, our guidelines are carefully reviewed for content, readability, and objectivity by the Standards and Practice Guidelines Committee, by subject matter experts, and by the Board of Directors. Thus, the conclusions are carefully developed, although we are always prepared to consider new evidence or new perspectives and initiate revisions if needed.
The Connecticut attorney general has notified IDSA that he is investigating possible antitrust violations in connection with the development of our 2000 and 2006 Lyme disease guidelines. This unprecedented move against a professional society and its practice guidelines appears to have been initiated on behalf of health care professionals and patient care advocates who disagree with IDSA recommendations. These individuals maintain that Lyme disease exists in a chronic form, and that long-term intravenous ceftriaxone provides clinical benefit.
The guidelines committee had carefully considered clinical evidence on these topics, and concluded that there is no evidence Borrelia burgdorferi persists chronically following 10 to 28 days of antibiotic therapy. Moreover, clinical trials have demonstrated that long-term ceftriaxone provides no objective benefit, and can cause obvious harm in terms of adverse effects of ceftriaxone and vascular access complications. At IDSA's 2006 Annual Meeting, guideline committee representatives debated a spokesman from the International Lyme and Associated Diseases Society (ILADS) about these issues. ILADS produced no convincing data to indicate that our guidelines should be altered.
Nothing Replaces Clinician's Judgement Why is the Connecticut attorney general investigating IDSA? ILADS and others are unhappy that IDSA guidelines are used by the insurance industry as a basis for denying payment for chronic antibiotic therapy, thus depriving health care providers of income and depriving patients of therapy. IDSA is proud that its guidelines are considered authoritative and are widely used. However, IDSA recognizes that every patient is different, and nothing can replace a clinician's judgment. Guidelines are intended to help them reach decisions about the best course of treatment. They are suggestions based on the best available science--but they are by no means mandatory. IDSA cannot and would not dictate an individual physician's actions. Furthermore, the Society has no role in insurance company policy, and no insurance company has any role in the development of our guidelines.
There is no legal precedent for charging a professional society with antitrust violations for developing clinical practice guidelines, and legal experts tell us that an antitrust claim, if brought, would have little chance of success. Even if no claim is ever brought, this investigation will have an impact on IDSA. IDSA has already spent tens of thousands of dollars in attorney fees and many hours of staff time providing documents requested by the Connecticut attorney general. Thus far, IDSA has cooperated fully with the attorney general. We have nothing to hide: Our process is rigorous and transparent. We are concerned, however, that IDSA volunteers who serve on committees not be harassed, and not be hurt financially. We will vigorously resist requests that are intrusive and time-consuming for members if these requests seem frivolous.
The debate on how best to treat Lyme disease is a scientific one, and we believe it is best resolved scientifically. Unfortunately, those who are unhappy with our scientific conclusions have made it political. In some states, advocates have pressured the legislature to endorse long-term antibiotic therapy despite the evidence. In Connecticut, they have found a sympathetic ally in the attorney general, who has initiated this investigation.
We are immensely sympathetic to frustrated patients who have diverse symptoms, and who are frustrated that we cannot identify a cause for their symptoms. However, our Society is committed to management strategies that rely on data, interpreted by experienced clinicians and researchers, to formulate recommendations for what approaches are effective and safe. If therapies are used which have been demonstrated to be ineffective or unsafe, we cannot shy away from discouraging the use of such practices.
IDSA is facing an unprecedented challenge from the attorney general of Connecticut that threatens the role of all professional societies to educate their members and the public about best medical practices. We will do our best to educate the attorney general and his advisors, and other lawmakers and policymakers, about the merits of evidence-based practice guidelines. We also are working to educate the media and the public about Lyme disease and its proper treatment. However, we will resist any efforts to prevent the dissemination of objective, science-based recommendations.
You have already rated this content. Rating Level: : 1.34/9
447 Total Ratings
Posted by Lymetoo (Member # 743) on :
up
Posted by Dave6002 (Member # 9064) on :
Rating Level: : 1.34/9
452 Total Ratings
We should have put our comments to this article in a thread.
Posted by Robin123 (Member # 9197) on :
Someone should make a cartoon of that statement...
![[Eek!]](eek.gif)
![[Razz]](tongue.gif)
![[confused]](graemlins/confused.gif)
85; i just voted and it showed 79 votes!!![[cussing]](graemlins/cussing.gif)
![[woohoo]](graemlins/woohoo.gif)
![[Smile]](smile.gif)
Hope the ID I saw reads every comment!![[puke]](graemlins/puke.gif)
![[Big Grin]](biggrin.gif)
![[lol]](graemlins/lol.gif)
![[Wink]](wink.gif)
![[bow]](graemlins/bow.gif)
![[shake]](graemlins/shake.gif)
![[Roll Eyes]](rolleyes.gif)
![[rant]](graemlins/rant.gif)
![[kiss]](graemlins/kissing.gif)
![[bonk]](graemlins/bonk.gif)