Amerikan infektiolääkärien yhdistys IDSA on julkaissut käsityksensä borrelioosista ja sen hoidosta. (Vertaa kansainvälisen borrelioosijärjestön ILADS:in vastaaviin suosituksiin http://www.ilads.org/ ). Alla olevan artikkelin kirjoittajalistalta löytyy mm. kansainvälisissä artikkeleissa kyseenalaista julkisuutta saaneita henkilöitä kuten tri Steere, Wormser, Shapiro, Dattwyler, Klempner jne.
Heidän kannanottonsa mukaan ei ole olemassa vakuuttavaa näyttöä kroonisen borrelioosin puolesta sen jälkeen, kun sairastuneet ovat saaneet suositusten mukaiset antibioottihoidot (muutamasta viikosta muutamaan kuukauteen). Antibioottihoito ei ole heidän mukaansa osoittautunut hyödylliseksi eikä sitä suositella mikäli oireet ovat subjektiivisia ja jatkuvat yli puoli vuotta. Lisäksi he eivät suosittele mitään seuraavista hoidoista borrelioosin hoidossa missään vaiheessa: IV immunoglobuliini, flukonatsoli, metronidazoli, tinidazoli, happihoidot, kolestyramiini, fluorokinolonit, pulssihoidot, amantadiini, benzathiini penisilliini G, pitkä antibioottihoito, ravintolisät jne.
Koko artikkeli löytyy osoitteesta:
http://www.journals.uchicago.edu/CID/jo ... 41631Guest
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Borrelioosin hoitoa koskeva "taisto" on edennyt. Amerikan infektiotautien järjestö IDSA on sitä vastaan nostetun syytteen mukaan todettu syylliseksi useisiin laittomuuksiin hoito-ohjeita laatiessaan. IDSA:n hoitosuosituksilla on valitettavasti ehtinyt jo olla laajat vaikutukset kroonista borrelioosia sairastavien hoitoon eri puolilla maailmaa.
IDSA:n todettiin syyllistyneen mm. seuraaviin asioihin:
IDSA ei tuonut lainkaan esille vastakkaisia näkemyksiä kroonista Borrelioosia koskevista tutkimuksista. Vastakkaisia näkemyksiä oli runsaasti.
IDSA:n vuoden 2000 ja 2006 borrelioosipaneelin jäsenet kieltäytyivät hyäksymästä tai ottamasta huomioon tietoa kroonisen borrelioosin puolesta puhuvista tutkimuksista.
IDSA esti sellaisten tutkijoiden ja lääkäreiden tapaamiset joilla oli IDSA:n kannasta poikkeava näkemys kroonisesta borrelioosista.
IDSA vaikutti lakien vastaisesti myös toisen lääketieteellisen järjestön borrelioosin hoitoa pohtivan paneelin hoito-ohjeisiin soluttamalla sinne useita omia jäseniään pyrkien siten edistämään omia näkemyksiään borrelioosista.
Syyttäjän mukaan borrelioosin/kroonisen borrelioosin hoitosuositukset laaditaan uudelleen. Niitä laatimaan muodostetaan uusi puolueeton paneeli.
(Suom.huom. Useat IDSA:n hoitosuosituksia laatineista lääkäreistä olivat eri tavoin kytköksissä esim. vakuutusyhtiöihin)
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IDSA joutui Connecticutin syyttäjän päätöksen vuoksi perumaan edelliset hoitosuosituksensa. Uusi paneeli on perustettu ja heille voi lähettää borrelioosin diagnostiikka ja hoitoa käsitteleviä näkemyksiä/tutkimksia huhtikuun kolmanteen päivään mennessä osoitteella "Review Panel? at: lyme@idsociety.org.
Paneelin valintakriteereistä esiintyy erimielisyyttä. Asiasta voi lukea esim. sivulta http://www.lymedisease.org/news/lymepolicywonk/46.html
Allaolevista linkeistä löytää runsaasti tietoa asiasta. Niistä huomaa että asia on ollut erittäin laajasti esillä Amerikan lehdistössä.
May 1, 2008
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care. They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions.
Insurance companies have denied coverage for long-term antibiotic treatment relying on these guidelines as justification. The guidelines are also widely cited for conclusions that chronic Lyme disease is nonexistent.
"This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines," Blumenthal said. "My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.
"The IDSA's Lyme guideline process lacked important procedural safeguards requiring complete reevaluation of the 2006 Lyme disease guidelines -- in effect a comprehensive reassessment through a new panel. The new panel will accept and analyze all evidence, including divergent opinion. An independent neutral ombudsman -- expert in medical ethics and conflicts of interest, selected by both the IDSA and my office -- will assess the new panel for conflicts of interests and ensure its integrity."
Blumenthal's findings include the following:
The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;
Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;
The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA's oversight committee;
The IDSA's 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group's position on chronic Lyme disease to achieve "consensus";
The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;
The IDSA portrayed another medical association's Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.
IDSA has reached an agreement with Blumenthal's office calling for creation of a review panel to thoroughly scrutinize the 2006 Lyme disease guidelines and update or revise them if necessary. The panel -- comprised of individuals without conflicts of interest -- will comprehensively review medical and scientific evidence and hold a scientific hearing to provide a forum for additional evidence. It will then determine whether each recommendation in the 2006 Lyme disease guidelines is justified by the evidence or needs revision or updating.
Blumenthal added, "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. In today's healthcare system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions. As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards.
"Our investigation was always about the IDSA's guidelines process -- not the science. IDSA should be recognized for its cooperation and agreement to address the serious concerns raised by my office. Our agreement with IDSA ensures that a new, conflicts-free panel will collect and review all pertinent information, reassess each recommendation and make necessary changes.
"This Action Plan -- incorporating a conflicts screen by an independent neutral expert and a public hearing to receive additional evidence -- can serve as a model for all medical organizations and societies that publish medical guidelines. This review should strengthen the public's confidence in such critical standards."
CT Ag Press Release
http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284
NY Times 5/2
AP Article
Doctors to reassess antibiotics for 'chronic Lyme' disease
http://www.nytimes.com/aponline/health/ ... ref=slogin
NJ Star Ledger 5/2
Group to reconsider Lyme disease rules
http://www.nj.com/starledger/stories/in ... xml&coll=1
Wall Street Journal 5/3
Lyme Disease Dispute is Settled
SHORT CLIP ? does anyone have access to complete STAFF article?
http://online.wsj.com/article/SB120969421231160733.html
Wall Street Journal Blog
Guidelines for Lyme Disease Treatment to go Back For Review 5/1
http://blogs.wsj.com/health/2008/05/01/ ... od=WSJBlog
Hartford Courant 5/3
http://www.courant.com/news/local/state ... 4350.story
All Headline News article
http://www.allheadlinenews.com/articles/7010836556
Winston Salem Journal 5/3
Lyme Disease Will Get a Second Look
http://www2.journalnow.com/content/2008 ... -2nd-look/
Rochester Democrat and Chronicle 5/2
New hope for sufferers of Lyme disease
May be one of the best articles for specific points!
NOTE: READER SUBMITTED ARTICLE!
Give Anyone Ideas?? (many newspapers have buttons where readers can submit articles incl. pictures)
http://www.democratandchronicle.com/app ... 032/LIVING
Newsday NY 5/1 AP Story
Conn. probe leads to review of Lyme Disease treatment
http://www.newsday.com/news/local/wire/ ... 2680.story
Hartford Courant 5/2
Agreement Is Reached On Lyme Disease
http://www.courant.com/news/health/hc-c ... 5299.story
Hartford Courant 5/1
Lyme Disease Treatment Guidelines To Be Reviewed
http://www.courant.com/news/custom/topn ... 5579.story
Wall St. Journal Blogs 5/1
Guidelines for Lyme Disease Treatment Go Back for Review
http://blogs.wsj.com/health/2008/05/01/ ... od=WSJBlog
The Washington Post 5/2 AP Article
Doctors to reassess antibiotics for 'chronic Lyme' disease
http://www.washingtonpost.com/wp-dyn/co ... tml?sub=AR
Philadelphia Inquirer 5/3 AP Article
Doctors agree to reassess 'chronic Lyme,' treatment
Under prodding, they will review guidelines questioning long-term use of antibiotics.
http://www.philly.com/inquirer/world_us/18543359.html
Philadelphia Inquirer 5/2 AP Article
Doctors to reassess antibiotics for 'chronic Lyme' disease
http://www.philly.com/philly/wires/ap/f ... 99449.html
NECM.com (MA) 5/2
Does Chronic Lyme Exist?
http://www.necn.com/Boston/Health/Does- ... 74818.html
Norwalk Plus News 5/1
Attorney General's investigation reveals flawed Lyme disease guideline process
(rehash of ATTY General?s Press Release)
http://www.norwalkplus.com/nwk/informat ... 1257.shtml
Boston Globe 5/2
Doctors to reassess antibiotics for 'chronic Lyme' disease
http://www.boston.com/news/health/artic ... e_disease/
Boston Globe 5/1
Conn. probe leads to review of Lyme Disease treatment 5/1
http://www.boston.com/news/local/connec ... treatment/
5/2 Yahoo News AP Article
http://news.yahoo.com/s/ap/20080502/ap_ ... me_disease
5/2 UPI Article
http://www.upi.com/NewsTrack/Top_News/2 ... ines/8870/
LDA Press Release
http://www.lymediseaseassociation.org/N ... 61116.html
KDBC Texas 5/2
Doctors to reassess antibiotics for 'chronic Lyme' disease
Associated Press article
http://www.kdbc.com/Global/story.asp?S=8263970
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Lähettäjä: Soijuv Lähetetty: 8.5.2008 8:41
Connecticutin osavaltion asianajaja Blumenthal ja IDSA pääsivät yhteisymmärrykseen siitä, että muodostetaan uusi riippumaton yhteistyöelin laatimaan uudet borrelioosin hoitosusoitukset. Uuteen työryhmään ei oteta edellisen työryhmän jäseniä.
Blumenthalin tutkimuksissa selvisi että edellinen työryhmä oli taloudellisista intresseistä johtuen jättänyt järjestelmällisesti huomioimatta huomattavan osan borrelioositutkimuksia. Lisäksi osa IDSA:n lääkäreistä oli sidoksissa lääketeollisuuteen ja borrelioosirokotteita kehittäviin laitoksiin.
"Agreement is reached on Lyme disease"
Hartford Courant (05/02/08 ) Hilary Waldman
http://www.courant.com/news/health/hc-c ... 5299.story
Connecticut Attorney General Richard Blumenthal and the Infectious
Diseases Society of America have reached an agreement to establish an
independent review of the organization's guidelines for treating Lyme
disease. The Society's treatment standards downplayed a belief by many
that the tick-borne bacteria can remain for years in the bloodstream
and cause debilitating chronic symptoms. The agreement came after
Blumenthal launched an antitrust investigation to look into complaints
that the treatment guidelines were biased. Blumenthal also said his
office found evidence that some members of the Society had personal
and professional financial stakes in companies that make or develop
Lyme disease tests and treatments. "What happened in this process,
what made it so flawed, is it excluded information. The cause of that
excluding of evidence was financial concern," he said. Under the
agreement, the Society will name an independent panel of experts to
review the guidelines. The new board will comprise members who were
not on the original guidelines panel, and they will be approved by an
ombudsman who is an expert in medical ethics. Dr. Donald Poretz, the
Society's president, said he agreed to the settlement in an effort to
clear the air.
To read the agreement between the Connecticut Attorney
General and the Infectious Diseases Society of America, visit
http://www.ct.gov/ag/lib/ag/health/idsaagreement.pdf.
_____________________________________________________________
Lähettäjä: jukka61 Lähetetty: 8.5.2008 16:18
Täytyy tunnustaa, että tietty viha-/rakkaussuhde on moneen eri Jenkkilän juttuun - tuskin voisi kuvitella, että meillä tälläista "casea" tulee - sen verran pienet piirit täällä on kytköksissä toisiinsa, laajemmin asia koskee lähes kaikki ns. "kähmintää" ja (poliittisia) lehmänkauppoja.
Toivottavasti tuosta kuitenkin jotain hyötyä on suomalaisille Borrelia-potilaille, joskus ns. virallisen totuuden - mm. käypähoitosuositukset ja muu jankutus vuodesta toiseen - on pakko väistyä "oikean" totuuden tieltä, jotka perustuvat uusiin tutkimuksiin.
Sen jälkeen on mielenkiintoista nähdä, mitä tapahtuu, vai tapahtuuko mitään ja kuinka moni lääkäri/tutkija "kääntää takkinsa".
_____________________________________________________________
Lähettäjä: Soijuv Lähetetty: 12.5.2008 18:09
Newstimes lehdessä aihetta käsiteltiin seuraavasti:
http://www.newstimes.com/ci_9231161
Useat tieteelliset tutkimukset osoittavat kroonisen Borrelioosin olevan todellisuutta. IDSA:n työryhmä ei hyväksynyt tätä näkökulmaa. Siksi työryhmän jäsenenä ollut infektiolääkäri Sam Donta kieltäytyi allekirjoittamasta IDSA:n hoitosuosituksia.
Tutkimuksissa on yleensä tutkittu vain jonkun tietyn antibiootin vaikutuksia Borrelioosiin. Mikäli se ei ole auttanut on tehty johtopäätös että antibioottihoidoista ei ole apua. Donta ihmettelee tällaisia johtopäätöksiä ja kysyy:" Mikäli jokin syöpälääke ei tehoa, ei hoitoa silloinkaan lopeteta. Silloin yritetään jotakin muuta syöpähoitoa?" Vakuutusyhtiöt ottivat IDSA:n hoitosuositukset vastaan suurella tyytyväisyydellä sillä suositusten ansiosta ne voivat kieltäytyä maksamasta Borrelioosiin sairastuneiden hoitoja.
Vaikka Borrelioosin hoidosta on olemassa kaksi toisistaan poikkeavaa näkemystä, on IDSA:n näkemys saanut (taloudellisista seikoista johtuen) enemmän huomiota. Tri Daniel Cameron kertoo ILADSin lääkäreiden ja tutkijoiden lukeneen samoja tutkimuksia kuin IDSA:n työryhmän lääkäritkin. He olivat kuitenkin tulleet päätelmissään tutkimustuloksista aivan vastakkaisiin tuloksiin. Tri Steven Phillips toivoo, että uuden Borrelioosihoitoja käsittelevän työryhmän tulosten jälkeen, kroonista Borrelioosia sairastavien hoito paranee.
Lyme disease care under fire
Medical groups differ on courses of treatment
By Robert Miller Staff Writer
Article Last Updated: 05/12/2008 04:14:20 AM EDT
In the battle over how best to treat Lyme disease, a new settlement between Attorney General Richard Blumenthal and a major medical group might seem to offer at least a little hope of expanded treatment for those with the tick-borne disease.
That, however, would involve a change in the lines of debate over the disease, and it's not clear there will be any yielding.
The settlement, reached this month between Blumenthal and the Infectious Diseases Society of America, provides for a review of the IDSA's guidelines for treating Lyme disease -- guidelines that a second group of doctors, the International Lyme and Associated Diseases Society, say are strict and inflexible to the point of harming some patients.
But the IDSA's guidelines will remain unchanged until that review ends. And while the review process will include the participation of an ombudsman, the guarantee that opposing voices will get their say, and hearings that will be broadcast on the Internet, they may not yield a single change, said Dr. Eugene Shapiro, a pediatrician, epidemiologist and professor of investigative medicine with the Yale School of Medicine in New Haven.
Asked last week if the IDSA guidelines could remained unchanged after the review, Shapiro said flatly, "Yes."
"If the scientific data recommends a change, we'll be happy to change," Shapiro said. "But we have 25 years of research on Lyme disease. We feel very comfortable the guidelines will stand up to any scientific scrutiny."
Doctors who are opposed to the IDSA guidelines said they believe there's at least a chance their position -- that infection from the Lyme disease bacteria Borrellia burgdorferi can create a chronic illness that needs long-term treatment with antibiotics -- will gain some credence with the review panel.
"I hope it will lead to an improvement to patient care," said Dr. Steven Phillips of Wilton, who has been one of the doctors opposing the strict guidelines in favor of those in which doctors can tailor treatment to individual patients.
Phillips is a past president of the International Lyme and Associated Diseases Society, which believes there is ample scientific evidence to treat people for chronic Lyme disease.
"We've looked at the same evidence as IDSA and come up with significantly different conclusions," said Dr. Daniel Cameron of Mount Kisco, N.Y., the current president of the group.
This isn't a merely a spat between two opposing medical groups.
In a press release, Blumenthal's office pointed out that insurance companies now use the IDSA guidelines to restrict care for patients and refuse to pay for long-term antibiotic care.
"It's a good way to have people denied insurance," said Maggie Shaw of Newtown, a member of that town's Lyme Disease Task Force. "It also puts the fear factor in doctors.
"Here are two standards of care, but only one gets recognized," Shaw said. "It's because of the stranglehold the IDSA has on this."
The settlement between Blumenthal and the IDSA came after Blumenthal sued the group -- which represents about 8,000 infectious disease specialists in the United States -- in 2006 for antitrust violations.
Blumenthal said his investigation discovered many examples of conflicts of interest among the doctors who wrote the IDSA guidelines. He also said they refused to "accept or meaningfully consider" any evidence concerning chronic Lyme disease in writing the 2006 guidelines and blocked the appointments of scientists and physicians who differed with the IDSA view that all Lyme disease can be treated with two to four weeks of antibiotics and that chronic Lyme disease does not exist.
"Our focus has not been on medicine but the process," Blumenthal said. "There may have been violation of the law and it's my job to enforce the law."
Dr. Sam Donta, a Massachusetts-based infectious disease specialist, was on the panel that drew up the IDSA guidelines. Donta said he refused to sign off on the guidelines when the group refused to acknowledge that chronic Lyme disease is a problem.
--The issue should not be whether there's chronic Lyme disease, but why we're seeing these patients," he said
The review process established in the settlement, Blumenthal said, will be "fair, open and free of conflict." Donta said Friday he hopes to serve on the panel.
But in its own press release on the settlement, the IDSA emphatically denies there was any "significant" conflict of interest on the part of any of the doctors who wrote the 2006 guidelines, or that they excluded conflicting points of view while writing them.
In fact, Shapiro said, having stricter guidelines means doctors who follow the IDSA protocols see patients fewer times and prescribe only short-term regimens of generic antibiotics.
Shapiro said the IDSA agreed to the settlement simply to end any attempt by Blumenthal to take the case to court.
"The alternative was spending a lot of money in an expensive lawsuit," he said.
Shapiro said all the scientific evidence on long-term treatment of Lyme disease, including five double-blind studies in which some patients got antibiotics and others a placebo, show that long-term antibiotics did not cure the symptoms that people include in the diagnoses of Lyme disease.
"It's not that data isn't there. It is," he said, pointing out that 95 percent of all Lyme cases are successfully treated with only two or three weeks of standard antibiotics.
But Cameron said the double-blind studies, all with a small number of patients, only show that Lyme disease is complicated.
"The evidence is quite mixed," he said.
And the trials often look at the effect of just one type of antibiotic on patients, Donta said.
"If one doesn't work, do you say all antibiotics don't work?," he asked. "If one cancer drug stops working, do you not try and find another? There's insufficient information in the guidelines for physicians to make a decision."
Phillips of Wilton said many peer-reviewed articles published in medical and scientific journals make the case that chronic Lyme disease does exist.
What they hope the new review of the IDSA guidelines do, they said, is take all this into account and give doctors a chance to treat each case individually, rather than with a one-size-fits-all approach.
"Let the doctors have some flexibility," Cameron said.
Contact Robert Miller
at bmiller@newstimes.com
or at (203) 731-3345.
LYME DISEASE
The most common tick-borne illness in the United States.
Caused by a bacterial spirochete, Borrelia burgdorferi.
Spread to humans by the bite of the black-legged tick, aka the deer tick.
Can cause fever, headache and muscle ache in early stages.
Often, but not always, is accompanied by a rash spreading from the site of the tick bite.
In most cases is cured by a few weeks of antibiotics.
If untreated or undertreated, Lyme infection can cause arthritic pain and swelling of the knees and joints.
Number of reported U.S, cases in 2006: 19,931.
Number of cases that might actually exist could be up to 10 times the number of reported cases.
There is debate whether chronic Lyme disease -- a long-term infection that can cause fatigue, memory loss, depression, loss of vision and hearing, arthritis and heart ailments -- exists.
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Lähettäjä: Soijuv Lähetetty: 20.5.2008 9:41
Amerikan neurologien Akatemia kiirehti IDSA:n myötävaikutuksella julkaisemaan omat IDSA:n kantaa myötäilevät hoitosuositukset Borrelioosiin. Kolme Akatemian jäsenistä edusti IDSA.ta. Vastineessaan lääkärit Stricker ja Johnson mainitsevat mm sen, että vastuullisessa lääketieteessä tunnustetaan mikäli asioista esiintyy vastakkaisia näkemyksiä eikä yritetä kaikin tavoin peitellä vastakkaisia tutkimuksia ja näkemyksiä.
PRACTICE PARAMETER: TREATMENT OF NERVOUS SYSTEM LYME DISEASE (AN EVIDENCE-BASED REVIEW): REPORT OF THE QUALITY STANDARDS SUBCOMMITTEE OF THE AMERICAN ACADEMY OF NEUROLOGY Neurology 2008;70;1719-1720
To the Editor: We wish to point out a serious ethical problem with the recently adopted Lyme disease treatment guidelines of the American Academy of Neurology (AAN).1 These guidelines have been touted as an ?independent corroboration? of the Lyme guidelines published by the Infectious Diseases Society of America (IDSA) in November 2006.2 Nothing could be further from the truth. The IDSA and AAN guidelines committees were clearly not independent in terms of personnel or philosophy. The AAN guidelines were put together by a committee of nine members, three of whom also served on the IDSA Lyme guidelines panel, including the chairman of each committee. The overlapping chairs virtually assured that the form and substance of the AAN guidelines would be like-minded?essentially a repackaging of the IDSA guidelines?by controlling the panel selection and scope of the process. AAN published its guidelines after the Attorney General of Connecticut launched an unprecedented investigation into potential anti-trust violations in the IDSA guidelines formulation.
The AAN guidelines were, not surprisingly, quickly endorsed by IDSA and presented to the medical community as ?independent corroboration? despite the overlapping panels and questions raised by the Connecticut investigation. Thus the timing of the AAN guidelines and the IDSA endorsement compounded the conflict of interest for both organizations. Two medical societies, IDSA and the International Lyme and Associated Diseases Society (ILADS), have published peer-reviewed, evidence based guidelines listed by the government sponsored National Guidelines Clearinghouse and offering divergent treatment approaches for Lyme disease.2,3 Under the IDSA guidelines recapitulated by AAN, patients who fail to respond to the IDSA protocols are denied longer antibiotic treatment. In contrast, the ILADS guidelines consider these patients to have chronic Lyme disease and provide the only viable treatment option for them.
The conflicting guidelines have established two standards of care for Lyme disease.4 Responsible medical societies have an obligation to acknowledge scientific uncertainty and lack of consensus when controversy exists regarding the treatment of medical conditions such as tick-borne diseases.4 It is unacceptable to repackage the beleaguered guidelines of another medical society and allow overlapping panel members with clear conflicts of interest to control the process. To ignore the conflicts of interest in these circumstances represents a serious ethical breach that discredits AAN and misleads the broader medical community, which relies on the ethical accountability of guidelines panels.5
Raphael B. Stricker, Lorraine Johnson, San
Francisco, CA
Disclosure: The authors report no conflicts of interest.
1. Halperin JJ, Shapiro ED, Logigian E, et al. Practice parameter:
treatment of nervous system Lyme disease (an
evidence-based review): Report of the Quality Standards
Subcommittee of the American Academy of Neurology.
Neurology 2007;69:91?102.
2. Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical
assessment, treatment, and prevention of Lyme disease,
human granulocytic anaplasmosis, and babesiosis:
clinical practice guidelines by the Infectious Diseases Society
of America. Clin Infect Dis 2006;41:1089?1134.
3. Cameron D, Gaito A, Harris N, et al, and the ILADS
Working Group. Evidence-based guidelines for the
management of Lyme disease. Expert Rev Anti-Infect
Ther 2004;2(1 suppl):S1?13.
4. Johnson L, Stricker RB. Treatment of Lyme disease: a
medicolegal assessment. Expert Rev Anti-Infect Ther
2004;2:533?557.
5. Steinbrook R. Guidance for guidelines. N Engl J Med
2007;356:331?333.
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Lähettäjä: Soijuv Lähetetty: 26.11.2008 16:51
Marraskuun Science- julkaisussa kerrottiin USA:n kongressin pohtivan IDSA:n hoitosuositusten käyttökelpoisuutta ja pitäisikö borrelioosia sairastaville IDSA:n näkemyksistä huolimatta sallia pitkät antibioottihoidot. Kongressin edustajan Frank Wolfin mukaan infektiotautien yhdistyksen, IDSA:n, antamia hoitosuosituksia ei tulisi käyttää.
Artikkelin lopussa on tri Strickerin tutkimus jossa pidennetyn antibioottihoidon todetaan olevan oikeutettua mikäli sairastuneen oireet jatkuvat ja silloin kun henkilöllä on lisäinfektioita.
http://blogs.sciencemag.org/scienceinsi ... se-ta.html
November 24, 2008
Lyme Disease: Taking Shots at Shots
Congress is wading into the murky question of whether people with Lyme disease should get long-term antibiotics or whether the drugs harm more than help. That issue, which has been a never-ending source of friction among biomedical researchers, will get congressional hearings next year.
If there were a Nobel Prize awarded for disease-that-causes-the-most-controversy, Lyme disease would be a top contender. For years, the tick-borne illness has been the subject of vicious fights between scientists and patient advocates over whether long-term antibiotics can help. Many affected by the disease say yes, citing waning symptoms after treatment; many scientists say no, and several clinical trials back them up.
Now entering the Lyme fray is Representative Frank Wolf (R?VA), who used to oversee funding for the U.S. National Science Foundation and other science agencies as a powerful spending panel chair when Republicans controlled the House of Representatives. In September, he sent a letter to the U.S. Department of Health and Human Services, demanding that it investigate the treatment guidelines of the Infectious Diseases Society of America (IDSA), which shuns long-term antibiotics. He has also requested that a congressional subcommittee hold hearings as soon as possible, and the office of Frank Pallone Jr. (D?NJ), who chairs the House Energy and Commerce panel's Subcommittee on Health, said they will occur next year. ?We want an independent evaluation? of the treatment guidelines, said Wolf in an interview with Science. Patients ?have lost confidence?some people are traveling for miles to get treatment.?
?I don?t believe? the IDSA guidelines should be used, he went on, ?but I?m not a scientist.? IDSA, no stranger to tumult, says it?s happy to cooperate with any hearings but stands by its recommendations. In fact, IDSA recently began assembling an independent panel of eight to 12 people to review its guidelines for Lyme treatment. A spokesperson told ScienceInsider, "We took this extra step to say, 'Okay [if] you don't believe us, let's put this out for review.' "
?Jennifer Couzin
Posted on 24 November 2008 at 04:50 PM | Permalink
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Please arm yourself with the scientific data, they have/are committing scientific fraud.
http://www.lymecryme.com
Read The Dearborn Conference "How the Test was Spun" to see how and why we are being misdiagnosed with the 41+ year old ELISA (screening neurological chronic Lyme infected people out) testing. They do not want to pay for our long term treatment.
Please read it, for you and your loved ones.
Posted by: Concerned Citizen | November 26, 2008 at 08:10 AM
Counterpoint: long-term antibiotic therapy improves persistent symptoms associated with Lyme disease.
Stricker RB.
International Lyme and Associated Diseases Society, Bethesda, MD, USA. rstricker@usmamed.com
BACKGROUND: Controversy exists regarding the diagnosis and treatment of Lyme disease. Patients with persistent symptoms after standard (2-4-week) antibiotic therapy for this tickborne illness have been denied further antibiotic treatment as a result of the perception that long-term infection with the Lyme spirochete, Borrelia burgdorferi, and associated tickborne pathogens is rare or nonexistent.
METHODS: I review the pathophysiology of B. burgdorferi infection and the peer-reviewed literature on diagnostic Lyme disease testing, standard treatment results, and coinfection with tickborne agents, such as Babesia, Anaplasma, Ehrlichia, and Bartonella species. I also examine uncontrolled and controlled trials of prolonged antibiotic therapy in patients with persistent symptoms of Lyme disease.
RESULTS: The complex "stealth" pathology of B. burgdorferi allows the spirochete to invade diverse tissues, elude the immune response, and establish long-term infection. Commercial testing for Lyme disease is highly specific but relatively insensitive, especially during the later stages of disease. Numerous studies have documented the failure of standard antibiotic therapy in patients with Lyme disease. Previous uncontrolled trials and recent placebo-controlled trials suggest that prolonged antibiotic therapy (duration, >4 weeks) may be beneficial for patients with persistent Lyme disease symptoms. Tickborne coinfections may increase the severity and duration of infection with B. burgdorferi.
CONCLUSIONS: Prolonged antibiotic therapy may be useful and justifiable in patients with persistent symptoms of Lyme disease and coinfection with tickborne agents.
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Clinical Infectious Diseases 2006;43:000
© 2006 by the Infectious Diseases Society of America. All rights reserved.
1058-4838/2006/4309-00XX$15.00
...There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease. Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (6 months) subjective symptoms after recommended treatment regimens for Lyme disease (E-I).
Therapeutic modalities not recommended.
Because of a lack of biologic plausibility, lack of efficacy, absence of supporting data, or the potential for harm to the patient, the following are not recommended for treatment of patients with any manifestation of Lyme disease: first-generation cephalosporins, fluoroquinolones, carbapenems, vancomycin, metronidazole, tinidazole, amantadine, ketolides, isoniazid, trimethoprim-sulfamethoxazole, fluconazole, benzathine penicillin G, combinations of antimicrobials, pulsed-dosing (i.e., dosing on some days but not others), long-term antibiotic therapy, anti-Bartonella therapies, hyperbaric oxygen, ozone, fever therapy, intravenous immunoglobulin, cholestyramine, intravenous hydrogen peroxide, specific nutritional supplements, and others (see table 4) (E-III).
ILADS vs. IDSA
Valvojat: Jatta1001, Borrelioosiyhdistys, Bb
IDSAn tiedonanto hoitosuosituksia laativasta uudesta paneelista:
Statement from IDSA on Selection of Panelists for Review
The Infectious Diseases Society of America (IDSA) announces the selection of a special review panel to examine whether the Society?s Lyme disease guidelines, published in 2006, should be revised or updated based on a rigorous review of the medical and scientific evidence.
IDSA is conducting this review as part of its voluntary agreement with the Attorney General of Connecticut, who had questioned the process used by IDSA?s previous guidelines panel. It is important to note that at no point were the medical findings of IDSA?s Lyme disease guidelines panel questioned by the Connecticut investigation. All recommendations from IDSA?s 2006 practice guidelines remain in effect.
Members of the review panel were selected through an open application process to ensure that the panel as a group reflects a balanced variety of perspectives and experience. Panel members come from a broad range of relevant disciplines, including clinical experience in treating patients with Lyme disease and experience in investigating the best methods to diagnose and treat Lyme disease and other infectious diseases. In addition to conducting a thorough literature review, the panel will hold a public hearing that will be available online and will solicit additional input.
As agreed by all parties, all review panel members, including the chairperson, were screened for potential conflicts of interest and were deemed eligible by ombudsman and medical ethicist Howard Brody, MD, PhD, author of ?Hooked: Ethics, the Medical Profession, and the Pharmaceutical Industry.? Dr. Brody was jointly selected by IDSA and the Office of the Attorney General.
The chairperson of the review panel is Carol J. Baker, MD, an infectious diseases specialist and pediatrician with Texas Children?s Hospital in Houston. Dr. Baker has more than three decades of experience treating patients and is professor of pediatrics, molecular virology and microbiology, and head of the section of infectious diseases at Baylor College of Medicine. She is a past president of the National Foundation for Infectious Diseases (NFID) and IDSA.
Following is a list of selected panelists:
Carol J. Baker, MD,
Chair Baylor College of Medicine
Houston, TX
William A. Charini, MD
Peabody, MA
Paul H. Duray, MD (retired)
Westwood, MA
Paul M. Lantos, MD
Duke University Medical Center
Durham, NC
Gerald Medoff, MD
Washington University School of Medicine
St. Louis, MO
Manuel H. Moro, DVM, MPH, PhD
National Institutes of Health
Bethesda, MD
David M. Mushatt, MD, MPH & TM
Tulane University School of Medicine
New Orleans, LA
Jeffrey Parsonnet, MD
Dartmouth‐Hitchcock Medical Center
Lebanon, NH
Cmdr. John W. Sanders, MD
U.S. Naval Medical Research Center Detachment, Peru
http://www.idsociety.org/Content.aspx?id=13310
Statement from IDSA on Selection of Panelists for Review
The Infectious Diseases Society of America (IDSA) announces the selection of a special review panel to examine whether the Society?s Lyme disease guidelines, published in 2006, should be revised or updated based on a rigorous review of the medical and scientific evidence.
IDSA is conducting this review as part of its voluntary agreement with the Attorney General of Connecticut, who had questioned the process used by IDSA?s previous guidelines panel. It is important to note that at no point were the medical findings of IDSA?s Lyme disease guidelines panel questioned by the Connecticut investigation. All recommendations from IDSA?s 2006 practice guidelines remain in effect.
Members of the review panel were selected through an open application process to ensure that the panel as a group reflects a balanced variety of perspectives and experience. Panel members come from a broad range of relevant disciplines, including clinical experience in treating patients with Lyme disease and experience in investigating the best methods to diagnose and treat Lyme disease and other infectious diseases. In addition to conducting a thorough literature review, the panel will hold a public hearing that will be available online and will solicit additional input.
As agreed by all parties, all review panel members, including the chairperson, were screened for potential conflicts of interest and were deemed eligible by ombudsman and medical ethicist Howard Brody, MD, PhD, author of ?Hooked: Ethics, the Medical Profession, and the Pharmaceutical Industry.? Dr. Brody was jointly selected by IDSA and the Office of the Attorney General.
The chairperson of the review panel is Carol J. Baker, MD, an infectious diseases specialist and pediatrician with Texas Children?s Hospital in Houston. Dr. Baker has more than three decades of experience treating patients and is professor of pediatrics, molecular virology and microbiology, and head of the section of infectious diseases at Baylor College of Medicine. She is a past president of the National Foundation for Infectious Diseases (NFID) and IDSA.
Following is a list of selected panelists:
Carol J. Baker, MD,
Chair Baylor College of Medicine
Houston, TX
William A. Charini, MD
Peabody, MA
Paul H. Duray, MD (retired)
Westwood, MA
Paul M. Lantos, MD
Duke University Medical Center
Durham, NC
Gerald Medoff, MD
Washington University School of Medicine
St. Louis, MO
Manuel H. Moro, DVM, MPH, PhD
National Institutes of Health
Bethesda, MD
David M. Mushatt, MD, MPH & TM
Tulane University School of Medicine
New Orleans, LA
Jeffrey Parsonnet, MD
Dartmouth‐Hitchcock Medical Center
Lebanon, NH
Cmdr. John W. Sanders, MD
U.S. Naval Medical Research Center Detachment, Peru
http://www.idsociety.org/Content.aspx?id=13310
IDSA joutui julkisen painostuksen ja Connecticutin syyttäjän päätöksen vuoksi perumaan edelliset hoitosuosituksensa. Uusi paneeli on perustettu ja heille voi lähettää Borrelioosin diagnostiikka ja hoitoa käsitteleviä näkemyksiä/tutkimksia huhtikuun kolmanteen päivään mennessä osoitteella "Review Panel? at: lyme@idsociety.org.
http://www.idsociety.org/Content.aspx?id=13352
IDSA Lyme Disease Review Panel Announces Public Input Period and Hearing Date
IDSA has convened a review panel to examine whether the Society?s Lyme Disease guidelines, published in 2006, should be revised or updated based on a rigorous review of the medical and scientific evidence on the diagnosis and treatment of Lyme Disease.
The Review Panel is initiating a 60-day input period to allow the public to submit information to ensure that all points of view are taken into consideration. There will also be an open public hearing to offer a forum for the presentation of relevant information on the diagnosis and treatment of Lyme Disease.
The 60-day public input period is now open. Interested individuals and organizations may submit information as follows:
Submissions* must be received by 5:00 PM Eastern, April 3, 2009 and must include:
1. Statement (< 5 pages) including:
a. Name and contact information of the submitter
b. Issue(s)/concern(s) and relevance to 2006 IDSA Lyme Disease guidelines; and/or
c. Issue(s) not covered in the 2006 IDSA Lyme Disease guidelines
2. Reference list of supporting data (if available) (<2 pages)
Submissions should be made to the attention of the ?IDSA Lyme Disease Review Panel? at: lyme@idsociety.org.
The Review Panel is committed to considering all points of view. The Panel respectfully requests that those submitting comments not exceed the page limit in order to ensure that Panel members have ample opportunity to review all comments.
*Note that submissions may be posted Online by IDSA for public viewing.
Open Public Hearing April 27
The Review Panel will hold an open public hearing on Monday, April 27, 2009 in the Washington, DC area (location to be determined). Additional information, including how to apply to be a presenter, is forthcoming.
http://www.idsociety.org/Content.aspx?id=13352
IDSA Lyme Disease Review Panel Announces Public Input Period and Hearing Date
IDSA has convened a review panel to examine whether the Society?s Lyme Disease guidelines, published in 2006, should be revised or updated based on a rigorous review of the medical and scientific evidence on the diagnosis and treatment of Lyme Disease.
The Review Panel is initiating a 60-day input period to allow the public to submit information to ensure that all points of view are taken into consideration. There will also be an open public hearing to offer a forum for the presentation of relevant information on the diagnosis and treatment of Lyme Disease.
The 60-day public input period is now open. Interested individuals and organizations may submit information as follows:
Submissions* must be received by 5:00 PM Eastern, April 3, 2009 and must include:
1. Statement (< 5 pages) including:
a. Name and contact information of the submitter
b. Issue(s)/concern(s) and relevance to 2006 IDSA Lyme Disease guidelines; and/or
c. Issue(s) not covered in the 2006 IDSA Lyme Disease guidelines
2. Reference list of supporting data (if available) (<2 pages)
Submissions should be made to the attention of the ?IDSA Lyme Disease Review Panel? at: lyme@idsociety.org.
The Review Panel is committed to considering all points of view. The Panel respectfully requests that those submitting comments not exceed the page limit in order to ensure that Panel members have ample opportunity to review all comments.
*Note that submissions may be posted Online by IDSA for public viewing.
Open Public Hearing April 27
The Review Panel will hold an open public hearing on Monday, April 27, 2009 in the Washington, DC area (location to be determined). Additional information, including how to apply to be a presenter, is forthcoming.