International Lyme and Associated Diseases Society

The International Lyme and Associated Diseases Society (ILADS, pronounced /ˈaɪlædz/) is a non-profit pressure group[1][2] which advocates for greater acceptance of the controversial diagnosis "chronic Lyme disease".[3] ILADS was formed by advocates for the recognition of chronic lyme disease including physicians, patients and laboratory personnel, and has published alternative treatment guidelines and diagnostic criteria[4] due to the disagreement with mainstream medical views on Lyme disease.[1]

ILADS sustains the Controversy as to the existence of chronic Lyme disease, including advocating for long-term antibiotic treatment. The majority believe that the existence of persistent borrelia infection is not supported by clinical evidence, and the use of long term antibiotics is dangerous, while ILADS disagrees.[5] Opponents cite major US medical authorities, including the Infectious Diseases Society of America,[6] the American Academy of Neurology,[7] and the National Institutes of Health,[8] are careful to distinguish the diagnosis and treatment of "patients who have had well-documented Lyme disease and who remain symptomatic for many months to years after completion of appropriate antibiotic therapy"[6]:1116 from patients who have not had well-documented Lyme disease; the consensus accepts the existence of post–Lyme disease symptoms in a minority of patients who have had Lyme. The consensus rejects long-term antibiotic treatment even for these patients, as entailing too much risk and lacking sufficient efficacy to subject patients to the risks.[6]:1115[7]:99[8] The consensus calls for more research into understanding the pathologies that afflict patients with post-Lyme syndrome and into better treatments.

A 2004 article in the Pediatric Infectious Disease Journal on the prevalence of inaccurate online information about Lyme disease cited the ILADS website as a source of such inaccurate material.[9] One source reported that several current and former physician officers of ILADS had been sanctioned by federal agencies or state medical boards.[2]

There has been much debate concerning conflict of interest of the IDSA and their suggested guidelines were removed from the CDC website following pressure from the Attorney General Richard Blumenthal. "Attorney General Richard Blumenthal of the State of Connecticut conducted an antitrust investigation into {IDSA} guidelines, which led to a settlement (agreement) with the IDSA. His findings [4] noted that “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.”" [10] This type of conflict of interest has motivated the creation of the ILADS.

References
  1. Johnson, Michael; Feder, Henry M. (December 2010). "Chronic Lyme Disease: A Survey of Connecticut Primary Care Physicians". The Journal of Pediatrics. 157 (6): 1025–1029.e2. doi:10.1016/j.jpeds.2010.06.031.
  2. Auwaerter, P. G.; Bakken, J. S.; Dattwyler, R. J.; Dumler, J. S.; Halperin, J. J.; McSweegan, E.; Nadelman, R. B.; O'Connell, S.; Sood, S. K.; Weinstein, A.; Wormser, G. P. (21 November 2010). "Scientific evidence and best patient care practices should guide the ethics of Lyme disease activism". Journal of Medical Ethics. 37 (2): 68–73. doi:10.1136/jme.2009.032896.
  3. Whelan, David (March 12, 2007). "Lyme, Inc". Forbes. Retrieved July 6, 2009.
  4. "National Guideline Clearinghouse | Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease". www.guideline.gov. Archived from the original on 2015-09-23. Retrieved 2015-09-21.
  5. Feder HM, Johnson BJ, O'Connell S, et al. (October 2007). "A critical appraisal of "chronic Lyme disease"". N. Engl. J. Med. 357 (14): 1422–30. doi:10.1056/NEJMra072023. PMID 17914043.
  6. Wormser GP; Dattwyler RJ; Shapiro ED; et al. (November 2006). "The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America" (PDF). Clin. Infect. Dis. 43 (9): 1089–1134. doi:10.1086/508667. PMID 17029130.
  7. Halperin JJ, Shapiro ED, Logigian E, et al. (July 2007). "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. 69 (1): 91–102. doi:10.1212/01.wnl.0000265517.66976.28. PMID 17522387.
  8. ""Chronic Lyme Disease" Fact Sheet". National Institute of Allergy and Infectious Diseases. September 3, 2015.
  9. Cooper JD, Feder HM (December 2004). "Inaccurate information about lyme disease on the internet" (PDF). Pediatr. Infect. Dis. J. 23 (12): 1105–8. doi:10.1097/01.inf.0000145411.57449.f3. PMID 15626946.
  10. Natkin JP (Fall 2017). "Late You Come: Legislation on Lyme Treatment in an Era of Conflicting Guidelines". Open Forum Infectious Diseases. 4 (4). doi:10.1093/ofid/ofx152. PMC 5751036.
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