posted
ILADS Demands Retraction of New IDSA Guidelines for Treatment of Lyme Disease 1 hour, 1 minute ago
To: National Desk, Health Reporter
Contact: Raphael Stricker, 415-823-4007 or Richard Horowitz, 845-229-8977 or Barbara Buchman, 301-263-1080, all of International Lyme and Associated Diseases Society
WASHINGTON, Oct. 27 /U.S. Newswire/ -- Recently published Lyme disease guidelines from the Infectious Diseases Society of America (IDSA) "threaten to harm patients and patient care," writes Dr. Raphael Stricker, president of the International Lyme and Associated Diseases Society (ILADS) in an angry and highly unusual letter to Dr. Sherwood Gorbach, editor of 'Clinical Infectious Diseases.' The letter calls for retraction of the article, "The clinical assessment, treatment, and prevention of Lyme disease, human granulocytic anaplasmosis, and babesiosis: Clinical practice guidelines by the Infectious Diseases Society of America."
Authors used exclusionary data selection, writes Dr. Stricker, which substantially biased the resulting diagnosis and treatment recommendations and ignored opposing or dissenting views.
Lyme disease is a major public health problem caused by a complex bacterial agent carried and spread by ticks. Lyme bacteria have the ability to evade immune destruction, entrench themselves deep within tissues and migrate throughout the body causing a multi-system illness. There is no single reliable diagnostic laboratory test and there is no universally accepted treatment for Lyme disease.
In a point-by-point analysis of the guidelines, Dr. Stricker states IDSA's position reflects a biased view of the disease that's either unsubstantiated or refuted by existing peer- reviewed medical literature. "The IDSA's 'one-size fits all' approach to Lyme diagnosis and treatment will result in misdiagnosis and denial of care to thousands of patients annually," writes Dr. Stricker in the letter to Dr. Gorbach, "creating a public health burden as...patients become chronically ill and disabled."
"We believe the same principles of scientific integrity that apply to medical research should also apply to practice guidelines," states Dr. Stricker. The IDSA authors deliberately excluded divergent points of view, he adds. As a result, ten of IDSA's central recommendations are based solely on opinion, considered the weakest level of evidence in science circles.
ILADS demands immediate retraction of the guidelines article and subsequent CDC notification; creation of a new Lyme disease guidelines committee comprised of diverse points of view to reformulate the guidelines; and then submission of revised guidelines for outside peer review to a medical journal independent of IDSA.
Dr. Stricker's letter was widely distributed to CDC, NIH, FDA and leading national physician organizations.
ILADS ( http://www.ilads.org ) is a multi-specialty medical society comprised of all sub-specialists who treat Lyme disease, including infectious disease specialists, neurologists, rheumatologists, psychiatrists, endocrinologists and internal medicine physicians. President Dr. Raphael B. Stricker is medical director of Union Square Medical Associates in San Francisco.
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-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
Hopefully this will also be picked up by MSM (mainstream media).
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
That is excellent. Let's hope it is published by many others as well. Especially the Long Island Newsday and the Martha's Vineyard paper that both published the article about the ILADS guidelines.
-------------------- Lynne
"Never doubt that a small group of thoughtful, concerned citizens can change the world. Indeed, it is the only thing that ever has." - Margaret Mead Posts: 63 | From USA | Registered: Jul 2006
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sometimesdilly
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The ILADS campaign against the guidelines just gets more and more impressive.
Good science, great strategy, and yay! they know how to use PR as a megaphone to amplify the guideline writers' professional disgrace. And they'e acting NOW.
Bravo ILADS!
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Michelle M
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Fight fire with fire!
Go ILADS!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
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posted
YEA for our side. Great find Brian. Outstanding letter, and thanks for posting entire thing Suzanne! Bettyg
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posted
I hate to give you the bad news people, but that letter of Stricker's however accurate, truthful and eloquent is not going to amount to a tinkers damn because the CDC, the NIH, the IDSA and, the medical review boards and all the rest have been bought and sold.
This whole business is now no longer about medicine or people, or sickness and human suffering at all. It is about money, pure and simple. The only way it is going to change is either through the perpetration of a series of highly illegal actions which were I to outline would cause me to be immediately suspended from this website or through a series of massive lawsuits that will hurt and I mean really hurt the likes of Steere, Wormser, the individuals at the CDC and the North Carolina Medical Review Board and above all Blue Cross/Blue Shield in the only place, apart from a bullet wound, which really hurts, namely their bank accounts and pocket books. So you can just forget about all this foolishness of protesting, petitioning and all the rest.
I further hate to tell you people the facts of life, but the United States of America is no longer a country governed by the rule of law but rather a country governed solely by the rule of money. As for being a democracy, well, I am not even going to go there. I will leave you with your illusions. Cheers. Thomas Parkman
-------------------- Thomas Parkman Posts: 341 | From Columbia SC 29206 | Registered: Feb 2003
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sometimesdilly
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Dear Mr. Parkman:
With all due respect: phooey.
IMO you're right about one thing- money is sure talking bigger than ever nowadays, and petitions alone, even with huge numbers, won't change diddly.
But who said petitions alone is what's going on? That's a starting place for one end of things.
I think you're flat out wrong about 2 things:
1- what ILADS is doing WILL be effective, even if it is only to call the medical community's attention to what is going on. I think a lot more than that will result, but even if it doesn't, way to go ILADS for getting that far as a FIRST step.
2- however cynical I can get on a given day I never lose sight of the fact that this IS still a democracy, my good sir, the longest standing one in world history and one where PROTEST by large numbers of people is EXACTLY what makes things change.
If we lose our belief in that and sit passively by while this kind of injustice goes on, yes, we are THEN doomed and complicit in our doom.
NO THANKS!!!
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Ditto Dilly!! Very well said and I agree totally. Keep in mind that some change has already occurred.
Check out the LDA's government action page here: http://www.lymediseaseassociation.org/IB_State.html . One of the most impressive changes to date is the Rhode Island law mandating long-term antibiotic treatment.
I don't think anyone here is naive about the realities of our world. However, one of those realities is that legislators are still voted in and another reality is that change does happen.
-------------------- Lynne
"Never doubt that a small group of thoughtful, concerned citizens can change the world. Indeed, it is the only thing that ever has." - Margaret Mead Posts: 63 | From USA | Registered: Jul 2006
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posted
We already have one RICO suit filed and dismissed. The suit was 100% correct imho. We all know the shady stuff going on. Can we fix the system? I'm leaning towards Thomas's skepticism but by no means should we throw up our hands and surrender.
Philippians 4:13, I can do all things through Christ who strengthens me.
11 Put on the whole armour of God, that ye may be able to stand against the wiles of the devil.
12 For we wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places.
13 Wherefore take unto you the whole armour of God, that ye may be able to withstand in the evil day, and having done all, to stand.
Posts: 731 | From Humble,TX | Registered: Feb 2005
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Ann-OH
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posted
Here is Dr. S's actual letter. I got it at www.ilads.org in the press release/press room section on the menu at the right.
I split it up to make it easier to read. Ann - OH
October 25, 2006
Sherwood Gorbach, M.D., Editor Clinical Infectious Diseases Tufts University School of Medicine 200 Harrison Avenue Boston, Massachusetts 02111
Subject: Retraction of ``The clinical assessment, treatment, and prevention of Lyme disease, human granulocytic anaplasmosis, and babesiosis: Clinical practice guidelines by the Infectious Diseases Society of America.''
Dear Dr. Gorbach:
On behalf of the membership of the International Lyme and Associated Diseases Society (ILADS), I am submitting a formal request for retraction of the article, ``The clinical assessment, treatment, and prevention of Lyme disease, human granulocytic anaplasmosis, and babesiosis: Clinical practice guidelines by the Infectious Diseases Society of America'' (hereafter referred to as the ``Lyme guidelines article''), which has been published electronically in your journal (1).
ILADS is requesting retraction of the Lyme guidelines article because the authors of the article employed exclusionary data selection that substantially biased the resulting diagnosis and treatment recommendations while ignoring opposing or dissenting views about these recommendations.
As with research articles tainted by data selection, the Lyme guidelines article threatens to harm patients and patient care due to the biased methodology used by the authors, and this threat can only be avoided by formal retraction of the article.
The attached analysis of key points in the Lyme guidelines article demonstrates that the authors of the article made statements that either reflected significant selection bias of published data or ignored published evidence that conflicted with their opinions.
Nowhere is this more apparent than in Dr. Klempner's analysis of the three NIH-funded Lyme treatment studies, which elevates and relies on the findings of his own study while dismissing the results of two other studies that conflict with his findings.
Other statements about the erythema migrans (EM) rash, Lyme testing methodology, antibiotic treatment of chronic Lyme disease, Lyme disease in pregnancy and Lyme disease in Southern states all reflect a biased view of Lyme disease that is either unsubstantiated or refuted by available peer-reviewed published literature.
It is disturbing that ten of the central recommendations in the guidelines are supported by evidence ranked E-III--that is, ``very strong'' recommendations based on the weakest level of evidence--opinion.
In light of the controversy surrounding Lyme disease diagnosis and treatment and our evolving understanding of the disease, it is inappropriate to dictate medical care based on such weak evidence.
The panel of authors was selected to exclude divergent points of view from patients, from treating physicians in other medical societies, and even from physicians within IDSA itself.
The failure of the authors to disclose dissenting views presents a false sense of consensus on an issue that is in fact highly controversial, misinforming patients and physicians alike about available treatment options and denying the exercise of clinical discretion and individualized medical decision-making that is central to any complex illness.
Although the Lyme guidelines article boasts 405 references, many of the dissenting references are either glossed over or ignored in the text.
In addition, as of the date of publication of the Lyme guidelines article there were 18,537 articles about tick-borne diseases listed on Medline, so the referenced articles represent only 2% of the available literature.
The remaining 98% of these articles often present opposing or conflicting views of Lyme disease, and thus the data selection by the authors is even more striking.
We are aware that retraction of medical publications is generally reserved for research articles that violate principles of scientific integrity (2).
Scientific integrity has been defined as ``commitment to truthfulness, to personal accountability and to vigorous adherence to standards of professional conduct (eg, accuracy, fairness, collegiality, transparency)'' (3).
Clinical guidelines from societies as powerful as IDSA are generally accepted as accurate, fair, collegial and transparent, and they rapidly become the standard of medical care in our country.
It is wholly inappropriate and dangerous for guidelines to be formulated using exclusionary tactics, flagrant data selection, biased opinions and sweepingly ``strong'' recommendations based on the weakest category III evidence.
We feel that the same principles of scientific integrity that apply to medical research should also apply to practice guidelines.
In our opinion, the Lyme guidelines article does not reflect accuracy, fairness, collegiality or transparency and should be retracted.
We propose the following: 1. Immediate retraction of the published Lyme guidelines article.
2. Formal notification of the CDC and other medical societies that the guidelines article has been retracted.
3. Formation of a widely diversified Lyme guidelines committee that bases its recommendations on the strength of the underlying evidence.
4. Reformulation of the Lyme guidelines article to reflect a more balanced view of tick-borne diseases, taking into account the existing evidence-based ILADS guidelines article listed by the National Guidelines Clearinghouse (4).
5. Submission of the reformulated guidelines article for outside peer review to a medical journal that is independent of IDSA.
Vermont_Lymie
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posted
Go ILADS!
If anyone has ideas how best we can support Dr. S and the ILADS group (no, don't have much money but willing to write letters and sign petitions), please let us know!
Right on Dilly. I have seen relatively small groups of determined people work together to change public policies in the US within my lifetime,
so we have got to keep at it for our own sake and for those others suffering from lyme disease.
Posts: 2557 | From home | Registered: Aug 2006
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posted
do we live in a Democracy, NO - only in theory.
far more dangerous, IMO, than actually knowing we don't. -- in that the illusions are powerful inhibitors to public knowledge, and keep poeple from knowing the efforts now must be herculian from each of us to make a difference.
afterall, with all that has transpired on this front and so many others -- clearly this is not a Democracy, or we would not have lost so much so quickly. just as one example - and a good one to look at - the issueing of these guidelines. they are arbitrary and capricious - yet - they were published. doctor's are blindly responding to them. despite the facts.
do i believe in power of the people - YES, as it is our only hope.
big money interests do indeed control this country. hands down. and they weaken us by coming at the public from every angle.
control. power. encourage complaicancy. impose ignorance. take actions that the public remains unaware of. make it look official, as though it is for our welfare. strike those who are progressive activists. controlled media. organized supression of facts. go to sleep everyone, it's all going to be alright..never you mind. ect, ect.
the power we have left is to do what Dilly says - stand up, be heard, educate your communities. it takes much more work now, though. much more work than it would if we were truly, a democratic republic.
smoke and mirrors is the name of the game in this day.
so i agree with thomas in that the typical 'democratic' exertions will not be effective -
it's going to take more revolutionary efforts and exposing of criminal acts.
i like strickers letter.
it clarifies the bias of information and conflict of interest issues quite well.
members must work hard to get this letter out in every newspaper across the country for it to start to actually BEGIN to change things.
now is the time to strike, these guidelines are damning, but they are also vulnerable.
HOWEVER, just knowing that is nowhere near enough. we all EACH have to do something in a concerted effort, we can't rely on others, or on ILADS and the LDA, to do it alone.
IMO we have to sign the petitions, follow the legislative contact action alerts in a MAJOR way (get many others to write that you know) AND - put this letter in your papers.
back ILADS, back the OPEN EYE documentary - circulate the trailer -- back JONES. and others should work on exposing the crimes as well.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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sometimesdilly
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(Hi VT Lymie!
I agree, Mo, these are tough times. ONE of the worst patches in our whole very short history as a country.
But there have been others like this-nd worse- and we made it through to the other side. Recall the early 20th century through to the New Deal, for instance.
Think robber barons,a Congress that was entirely owned by the rich to serve the rich; NO federal assistance to help the poor or the elderly or anyone else but the business class; business owners who simply shot or beat up workers that got out of line; I could go on and on and on.
Our system was so skewed to the top 1% and their interests that it drove itself straight into the ditch called the Great Depression.
But then, over a period of a few short years, much of the agenda of the Progressive movement became law. That movement had lots of folks in it, but still represnted a pretty teeny tiny minority of the population who had been yelling at the top of their lungs, largely disregarded, for 20-30 YEARS.
Moral of the story?
Yep, going up against the rich and powerful can take a very long time and lots of effort indeed. But, there has not been a time yet in our history when that kind of effort wasn't ultimately successful. That IS democracy, warts and all. --
So, forget being demoralized, let's come out swinging, but pace ourselves for a long haul!
And I agree, Mo, we should work our hearts out to support the efforts of ILADS and the LDA, and no, that work can't be the whole struggle.
For myself, I am convinced that the lyme community needs to find common cause with a great deal of other communities & groups that are facing similiar situations. I have NO DOUBT that there are many.
Looking for those groups and beginning to define that common cause is what I am working on now. Our lyme community needs allies, and needs them quickly...
(never thought I'd be discussing democracy here on the board...
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Vermont_Lymie
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posted
As Winston Churchill said,
Democracy is the worst form of government,
except for all the others!
Remember, people who were HIV positive were not getting enough research and treatment options until they organized ACT-UP and actually performed their own clinical drug studies, which led to the use of many of the anti-retroviral drugs that has saved so many thousands of lives....
they took action to support their health and survival -- and so will the lyme community. They also had help from great doctors, like Dr. Stricker.
Dilly, thanks for being our historian! That is an inspirational lesson!
posted
I lean toward the postitve side also. We the people can stand up and skid hell sideways if we want.
I remember back in the 1990's when the FDA and the powers that be tried to take almost all natural supplements off the market.
Great bumper stickers came out like....Ted Kennedy's car has killed more people then my supplements. The people stood up, got active and sent the movement to its grave.
Posts: 805 | From Utopia | Registered: Feb 2006
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As newer, younger researchers come into the game it will all change, as they don't have a vested interested in the status quo. Truth will win out.
On the other hand, however, those of us who have been infected for over a decade are already screwed. As this change will take years. And, meanwhile, those of us who have already lost the best parts of our lives just have to hang on and hope that some breakthrough will keep us from inevitable dotage.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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it is just the reality that it is harder at this stage in history because most of this news is kept from the public.
a healthy, working democracy can only thrive if the public hears more than one version of the 'truth'. that's the key reason we do not have healthy democracy now. MASS MEDIA IS NOW COORPERATE/GOVERNMENT CONTROLLED AND OWNED.
the 'other' side of issues is not being told/aired. statements/claims .. "news slants" are not being challanged -- becuase they just won't print it, or air it.
a big difference in this day than in the past.
the Lyme wars are much the same.
IDSA/INSURERS/GOVERNMENT INTERESTS/MONEY IS CONTROLLING OUR MEDICAL CARE.
they also have control of what the public is told on the ground (in the medical offices).
the biggest job is to get the word out.
once people learn about what is actually happening, there is no way they would sit for this .. or codex (supplements illegal in US by 2009), or many other things that are detrimental to society and yet chugging right along.
the 'machine' is working hard to keep public awareness low - divide and conquer, all of that.
people are doing all they can to pay their bills, and then getting ill on top of that. the public is kept in the dark.
i think we CAN do this, but it will take educating masses of people to engage them in the issues that effect our day to day.
(ie: my healthfood store did not even know codex was happening! now they have a campaign in the store to get customers to take action ..
several chiropractors in my area - alternative minded plus western med docs - knew there was a problem with lyme, but had no idea about all of the medical/political goings on -- for two examples.)
i believe the public would act if they KNEW.
that goes for allot of things. this is the time to educate on lyme, before these guidelines become fully implemented - the issue should be in all forms of media we can reach.
activism should be centered on spreading the word, and giving actions to take as ILADS/LDA are laying forth.
.. M.O.
mo
[ 29. October 2006, 07:17 PM: Message edited by: Mo ]
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Vermont_Lymie
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Mo -- it is true what you said,
the public needs to hear more than just the IDSA story.
I guarantee you that if we have a group of people dress up as spirochetes or ducks and protest outside some appropriate public meeting in a major city like NYC or DC and issue a press release on "National Lyme Awareness Day" while listing the reasons that the IDSA guidelines are faulty, then we could get some good press coverage.
I volunteer to make my spirochete costume and look for a suitable meeting if you can get another group to dress up as TBD's!
Kind of like the Guerrilla Girls did in NYC for the artworld back ten years ago.
Posts: 2557 | From home | Registered: Aug 2006
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sometimesdilly
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Hi again Mo et al. -
I agree with you, Mo,that hordes of Americans would be out in the streets rattling their vitamin bottles in protest if they had any clue about Codex.
And for sure the mainstream media ain't going to tell us. But do you know how many people get their news from the MSM anymore? I believe that number is under 20%.
Lots of folks don't listen to news anywhere about anything. So write THEM off. Huge numbers of people are getting informed via the web, though, and used effectively, its a heck of a tool for education, outreach, and rallying people to the cause.
Here's one way I'm using the web (and the more, the merrier)-
--first research what other medical guidelines have been issued recently that similiarly ducked science to achieve a predetermined end.
--determine what groups of people were affected, then what organized entities represent their interests.
-contact those groups, saying, here's what just happened here in lyme world; just like what is happening to you guys.
Hey, please sign our petition, etc.- and then, how can we work together to push back against this violation of OUR basic right to adequate medical care?
Allies, allies, allies......
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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Oh, VT --
missed your post writing mine.
I LOVE that idea. Sure hope you weren't joking. I'd be happy to dress up, even as a bad ducky, for the cause.
Want to be the recruiter? I'd travel to NYC...or hmm, maybe even YALE or similiar hostplaces of ISDA writers to have a part in that show.
Really. Sign me up.
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Vermont_Lymie
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posted
Dilly, great! Thanks!
Want to go as a duck or bacteria? I am totally serious!
It would be hard for a photographer to resist a pic of ten 6-foot spirochetes holding protest signs.
Fantastic idea, let's go to Yale or the next IDSA-type meeting...
next late spring/summer? (sorry for the long wait, but i will need the lead time -- and your organizing skills)! But I will come out to protest earlier, even in winter, if someone else organizes!
And your organizing strategy is great. Maybe senior citizen's groups would be natural allies? To the extent that they have had problems with medicare; and given that they are a group in potential need for long-term abx treatment, or long-term treatment of any kind.... Posts: 2557 | From home | Registered: Aug 2006
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Truthfinder
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posted
8man12, could you please edit your initial post and use the link below instead of the long one you posted? I can't even read this topic because it is SO wide........
Here, I even made a small link for ya to put in there:
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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