IDSA
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4489928/
WASHINGTON, DC, December 15—In response to a citizen petition filed with the Centers for Disease Control and Prevention (CDC) on October 14, 2015, the CDC refused to end the preferential treatment it provides to the Infectious Diseases Society of America (IDSA) by endorsing and promoting IDSA’s 2006 guidelines for diagnosis and treatment of Lyme disease, while it continues to withhold information about more recent, peer-reviewed guidelines from the International Lyme and Associated Diseases Society (ILADS).
Since they were first published in 2000, the IDSA guidelines for Lyme disease have been the subject of intense controversy, including an antitrust investigation by the state of Connecticut in 2008 and hundreds of protests. The IDSA guidelines restrict antibiotic treatment to two to four weeks and dismiss the existence of chronic Lyme disease, despite hundreds of scientific studies documenting cases of persistent infection after short-term antibiotic treatment. In contrast, the ILADS guidelines recognize chronic Lyme and recommend that the “duration of therapy be guided by clinical response rather than by an arbitrary treatment course.”
The petition, “End Preferential Treatment of the IDSA Guidelines for Lyme Disease,” claims that CDC’s preferential treatment harms thousands of chronically ill patients, who are frequently misdiagnosed and denied medically necessary treatment because of restrictions imposed by the IDSA guidelines. CDC’s failure to provide equivalent exposure for the ILADS guidelines compounds the harm by limiting access to information about evidence-based treatments that could help these severely ill patients recover from this devastating disease.
.
In an email response to the petition, Beth P. Bell, MD, Director of CDC’s National Center for Emerging and Zoonotic Infectious Diseases (NCEZID), declined to take action. Instead, she defended CDC’s preferential treatment, saying, “CDC believes that IDSA guidelines currently represent the best available synthesis of the medical literature on the diagnosis and treatment of Lyme disease.”
Allison Caruana of the Mayday Project, a Lyme patient advocacy group that collaborated on the petition, asks, “How can these guidelines represent the best available synthesis of the medical literature?
The IDSA guidelines are nine years old and non-compliant with Institute of Medicine (IOM) standards and the GRADE system for rating evidence. On the other hand, the guidelines from ILADS were published in 2014, are compliant with the IOM standards and GRADE, and have been accepted and published by the National Guideline Clearinghouse.”According to the petition, CDC’s preferential treatment of IDSA, which is a private organization, violates the Standards of Ethical Conduct for Employees of the Executive Branch, which states: “Employees shall act impartially and not give preferential treatment to any private organization or individual.”
Bruce Fries, a member of the Mayday Project and lead author of the petition says, “Even more troubling is that Dr. Bell, who endorses the preferential treatment of IDSA, is also a member of IDSA—a clear conflict of interest.” Fries added, “It is unacceptable that when a federal government agency is presented with evidence of improprieties, the official response is to confirm the improprieties and indicate they will continue.”
In response to the reply from CDC, signers of the petition are contacting their Congressional representatives and requesting assistance to compel CDC to end its preferential treatment of the IDSA guidelines for Lyme disease.
About the Mayday Project
The Mayday Project was formed by a group of volunteers who have been touched by Lyme disease. Mayday advocates for more accurate tests, better guidelines, improved access to treatment, improved education for physicians, and more funding for research. For more information, visit
www.themaydayproject.org.
References
The Infectious Diseases Society of America Lyme guidelines: A Cautionary Tale about the Development of Clinical Practice Guidelines
www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226
Lyme Retreatment Guidance May be Flawed
http://news.brown.edu/pressreleases/2012/08/lyme
Findings of Richard Blumenthal’s Anti-Trust Investigation of IDSA
www.ct.gov/ag/cwp/view.asp?a=2795&q=414284
Conflicts of Interest in Lyme Disease: Laboratory Testing, Vaccination and Treatment Guidelines
www.lymediseaseassociation.org/images/pdf/ConflictReport.pdf
Severity of Chronic Lyme Disease Compared to Other Chronic Conditions: A Quality of Life Survey
https://peerj.com/articles/322
strona ILADS i więcej informacji
http://www.ilads.org/
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List of 700 Articles Citing Chronic Infection Associated with Tick-Borne Disease Compiled by Dr. Robert Bransfield
http://www.ilads.org/ilads_news/2015/list-of-700-articles-citing-chronic-infection-associated-with-tick-borne-disease-compiled-by-dr-robert-bransfield/
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4660677/
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nowości :
https://www.lymedisease.org/news-blogs/news/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4489928/
Abstract -
Advocacy for Lyme disease has become an increasingly important part of an antiscience movement that denies both the viral cause of AIDS and the benefits of vaccines and that supports unproven (sometimes dangerous) alternative medical treatments. Some activists portray Lyme disease, a geographically limited tick-borne infection, as a disease that is insidious, ubiquitous, difficult to diagnose, and almost incurable; they also propose that the disease causes mainly non-specific symptoms that can be treated only with long-term antibiotics and other unorthodox and unvalidated treatments. Similar to other antiscience groups, these advocates have created a pseudoscientific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science. The relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health.
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ILADS
CDC stands by IDSA Lyme treatment guidelines
The Mayday Project, a Lyme patient advocacy organization, issued the following press release on Dec. 15, 2015:
CDC Refuses to End Preferential Treatment of IDSA Lyme Guidelines; Patient advocates cite CDC/IDSA conflicts of interest
WASHINGTON, DC, December 15—In response to a citizen petition filed with the Centers for Disease Control and Prevention (CDC) on October 14, 2015, the CDC refused to end the preferential treatment it provides to the Infectious Diseases Society of America (IDSA) by endorsing and promoting IDSA’s 2006 guidelines for diagnosis and treatment of Lyme disease, while it continues to withhold information about more recent, peer-reviewed guidelines from the International Lyme and Associated Diseases Society (ILADS).
Since they were first published in 2000, the IDSA guidelines for Lyme disease have been the subject of intense controversy, including an antitrust investigation by the state of Connecticut in 2008 and hundreds of protests. The IDSA guidelines restrict antibiotic treatment to two to four weeks and dismiss the existence of chronic Lyme disease, despite hundreds of scientific studies documenting cases of persistent infection after short-term antibiotic treatment. In contrast, the ILADS guidelines recognize chronic Lyme and recommend that the “duration of therapy be guided by clinical response rather than by an arbitrary treatment course.”
The petition, “End Preferential Treatment of the IDSA Guidelines for Lyme Disease,” claims that CDC’s preferential treatment harms thousands of chronically ill patients, who are frequently misdiagnosed and denied medically necessary treatment because of restrictions imposed by the IDSA guidelines. CDC’s failure to provide equivalent exposure for the ILADS guidelines compounds the harm by limiting access to information about evidence-based treatments that could help these severely ill patients recover from this devastating disease.
.
In an email response to the petition, Beth P. Bell, MD, Director of CDC’s National Center for Emerging and Zoonotic Infectious Diseases (NCEZID), declined to take action. Instead, she defended CDC’s preferential treatment, saying, “CDC believes that IDSA guidelines currently represent the best available synthesis of the medical literature on the diagnosis and treatment of Lyme disease.”
Allison Caruana of the Mayday Project, a Lyme patient advocacy group that collaborated on the petition, asks, “How can these guidelines represent the best available synthesis of the medical literature?
The IDSA guidelines are nine years old and non-compliant with Institute of Medicine (IOM) standards and the GRADE system for rating evidence. On the other hand, the guidelines from ILADS were published in 2014, are compliant with the IOM standards and GRADE, and have been accepted and published by the National Guideline Clearinghouse.”According to the petition, CDC’s preferential treatment of IDSA, which is a private organization, violates the Standards of Ethical Conduct for Employees of the Executive Branch, which states: “Employees shall act impartially and not give preferential treatment to any private organization or individual.”
Bruce Fries, a member of the Mayday Project and lead author of the petition says, “Even more troubling is that Dr. Bell, who endorses the preferential treatment of IDSA, is also a member of IDSA—a clear conflict of interest.” Fries added, “It is unacceptable that when a federal government agency is presented with evidence of improprieties, the official response is to confirm the improprieties and indicate they will continue.”
In response to the reply from CDC, signers of the petition are contacting their Congressional representatives and requesting assistance to compel CDC to end its preferential treatment of the IDSA guidelines for Lyme disease.
About the Mayday Project
The Mayday Project was formed by a group of volunteers who have been touched by Lyme disease. Mayday advocates for more accurate tests, better guidelines, improved access to treatment, improved education for physicians, and more funding for research. For more information, visit
www.themaydayproject.org.
References
The Infectious Diseases Society of America Lyme guidelines: A Cautionary Tale about the Development of Clinical Practice Guidelines
www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226
Lyme Retreatment Guidance May be Flawed
http://news.brown.edu/pressreleases/2012/08/lyme
Findings of Richard Blumenthal’s Anti-Trust Investigation of IDSA
www.ct.gov/ag/cwp/view.asp?a=2795&q=414284
Conflicts of Interest in Lyme Disease: Laboratory Testing, Vaccination and Treatment Guidelines
www.lymediseaseassociation.org/images/pdf/ConflictReport.pdf
Severity of Chronic Lyme Disease Compared to Other Chronic Conditions: A Quality of Life Survey
https://peerj.com/articles/322
strona ILADS i więcej informacji
http://www.ilads.org/
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List of 700 Articles Citing Chronic Infection Associated with Tick-Borne Disease Compiled by Dr. Robert Bransfield
http://www.ilads.org/ilads_news/2015/list-of-700-articles-citing-chronic-infection-associated-with-tick-borne-disease-compiled-by-dr-robert-bransfield/
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4660677/
Abstract
Background
Many aspects of clinical management of Lyme neuroborreliosis are subject to intense debates. Guidelines show considerable variability in their recommendations, leading to divergent treatment regimes. The most pronounced differences in recommendations exist between guidelines from scientific societies and from patient advocacy groups. Assessment of the methodological quality of these contradictory guideline recommendations can be helpful for healthcare professionals.
Methods
Systematic searches were conducted in MEDLINE and databases of four international and national guideline organizations for guidelines on Lyme neuroborreliosis published from 1999–2014. Characteristics (e.g., year of publication, sponsoring organization) and key recommendations were extracted from each guideline. Two independent reviewers assessed the methodological quality of each guideline according to the Appraisal of Guidelines for Research and Evaluation II (AGREE II) tool. AGREE II scores from guidelines developed by scientific societies and from patient advocacy groups were compared across domains.
Results
We identified eight eligible guidelines of which n = 6 were developed by scientific societies and n = 2 by patient advocacy groups. Agreement on AGREE II scores was good (Cohen’s weighted kappa = 0.87, 95 % CI 0.83–0.92). Three guidelines, all from scientific societies, had an overall quality score of ≥ 50 %. Two of them were recommended for use according to the AGREE II criteria. Across all guidelines, the AGREE II domain with the highest scores was “Clarity of Presentation” (65, SD 19 %); all other domains had scores < 50 % with the domain “Applicability” having the lowest scores (4, SD 4 %). Guidelines developed by scientific societies had statistically significantly higher scores regarding clarity of presentation than guidelines from patient advocacy groups (p = 0.0151). No statistically significant differences were found in other domains.
Conclusions
Current guidelines on Lyme neuroborreliosis vary in methodological quality and content. Health care providers and patients need to be aware of this variability in quality when choosing recommendations for their treatment decisions regarding Lyme neuroborreliosis. No statement can be given on quality of content and validity of recommendations, as these issues are not subject to assessment with the AGREE II tool and are prone to individual interpretation of the available evidence by the corresponding guideline panels. To enhance guideline quality, guideline panels should put more emphasis on linking recommendations to the available evidence, transparency in reporting how evidence was searched for and evaluated, and the implementation of recommendations into clinical practice.
Electronic supplementary material
The online version of this article (doi:10.1186/s12883-015-0501-3) contains supplementary material, which is available to authorized users.
Background
Lyme disease is a tick-borne infectious disease caused by the spirochete bacterium Borrelia burgdorferi sensu lato. Lyme disease can affect multiple organ systems, common manifestations are dermatologic manifestations (e.g. erythema migrans), Lyme arthritis or Lyme neuroborreliosis [1].
Diagnosis of Lyme disease and Lyme neuroborreliosis is usually based on consensus-derived case definitions [2]. Tiered case definitions exist regarding likelihood of diagnosis depending on diagnostic results [3].
Many aspects of disease management are subject to controversy, sometimes referred to as the ‘Lyme wars’ [4]. Despite the consensus-derived case definitions, controversy further exists on how Lyme disease should be diagnosed and how it should be treated. Some diagnostic tests, like the lymphocyte-transformation test, are discouraged by some guidelines [3, 5, 6], whereas other guidelines recommend the use of this test [7]. What signs and symptoms are suspicious or typical of Lyme disease and which symptoms are rather unspecific is controversial among authors [8, 9]. Therapy of Lyme disease is another subject of disagreements and intense debate, including different opinions regarding choice and dosage of drugs, route of administration and duration of treatment.
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