The patient groups were alerting us to the discrepancies in Lyme disease recommendations long before the paper which is quite detailed and it isn't so clean in recruiting for psychiatric drug research either and this is in USA https://medium.com/matter/did-big-pharma-test-your-meds-on-homeless-people-a6d8d3fc7dfe
I wonder where the balance is in moving forward in research ethically while standing up for the vulnerable and how to pick these battles.
Best
Amy
Amy Price
Empower 2 Go
Building Brain Potential
Http://empower2go.org
Sent from my iPad
> On 2 Aug 2014, at 01:19 pm, "Juan Gérvas" <[log in to unmask]> wrote:
>
> -excellent paper, Ben
> -i know more about psychiatric problems
> http://onlinelibrary.wiley.com/doi/10.1111/jep.12016/abstract;jsessionid=C42625918F6541C06ED58354F924C720.f03t04?deniedAccessCustomisedMessage=&userIsAuthenticated=false
> -in any case, the Infectious Diseases Society of America (IDSA) is
> usually very close to pharmaceutical industries, as demonstrated at
> the beginning of the year with the "Tamiflu-Relenza" saga
> -un saludo
> -juan gérvas
>
> 2014-08-01 21:21 GMT+02:00, Djulbegovic, Benjamin <[log in to unmask]>:
>> This definitively deserves a debate: in May of 2008, the Attorney General of
>> Connecticut conducted antitrust investigation into the development of Lyme
>> disease treatment guidelines by the Infectious Diseases Society of America
>> (IDSA). The thrust of his argument is that the IDSA developed guidelines
>> based on flawed methodology that in turn forced false standard of care,
>> which cannot benefit the patients ( see
>> http://www.peh-med.com/content/5/1/9).
>> Lyme disease is one of those diseases that has been politicized leading to a
>> number of conspiracy theories accusing the (US) government of suppression of
>> evidence , all kinds of conflict of interests, etc, etc. The battle is now
>> taken to the EBM: which methods are right ones and which guidelines are
>> trustworthy? This is a paradigmitic example where science intersects with
>> politics, ethics and public health policy.
>> I look forward to some interesting and stimulating insights.
>> thanks
>> ben d
>>
>>
>>
>>
>> From: Evidence based health (EBH)
>> [mailto:[log in to unmask]] On Behalf Of Kate Bloor
>> Sent: Thursday, July 31, 2014 11:05 AM
>> To: [log in to unmask]
>> Subject: Fw: New Standard of Care Guidelines for Treating Lyme and Other
>> Tick-borne Illnesses
>>
>>
>>
>> I've not seen any discussion on the list on the IDSA/ ILADS divide related
>> to testing, diagnosis and treatment for lyme disease and other TBI's.
>>
>> One have claimed jurisdiction over the other - on grounds of the evidence
>> base, and professional legitimacy. However some claim that key european
>> research related to european tests, diagnosis and lyme disease clinical
>> presentations, has not often been included, and that this control of the
>> diagnostic agenda is no more than 'traditional authority'.
>>
>> Given that lyme infection, is the fastest growing vector borne disease in
>> the Northern Hemisphere, it is perhaps one the most major public health
>> threats of its kind in europe and beyond, this is a worthy debate. Also
>> given its contraversial nature, and the general climate of tensions between
>> doctors, patients, and health services, it deserves a wider debate amongst a
>> broader range of academic and professional groups, and patients advocacy
>> groups.
>>
>> I bring this to your attention. See new guidelines from ILADS below.
>>
>> Kate Bloor
>>
>>
>>
>>
>> New Standard of Care Guidelines for Treating Lyme and Other Tick-borne
>> Illnesses Released by International Lyme and Associated Diseases Society
>> (ILADS)
>> Bethesda, Maryland, July 31, 2014
>> How doctors treat patients with suspected Lyme infections needs to change so
>> as to avoid potential long term illness and suffering. To that end, the
>> International Lyme and Associated Diseases
>> Society<http://ilads.us8.list-manage1.com/track/click?u=618a4780f78630b439260ac0a&id=851d1c7c84&e=bd3361534c>
>> (ILADS) today released updated guidelines for the treatment of Lyme and
>> other tick borne infections which call on physicians to provide
>> evidence-based, patient-centered care for those with Lyme disease.
>>
>> Published in the August 2014 edition of the journal Expert Review of
>> Anti-infective
>> Therapy<http://ilads.us8.list-manage1.com/track/click?u=618a4780f78630b439260ac0a&id=7437aebf44&e=bd3361534c>,
>> the new guidelines, titled: Evidence Assessments and Guideline
>> Recommendations in Lyme disease: The Clinical Management of Known Tick
>> Bites, Erythema Migrans Rashes and Persistent Disease, say current
>> antibiotic protocols used by many physicians to prevent or treat Lyme
>> disease are inadequate, leading to an increased risk of Lyme disease
>> developing into a chronic illness.
>>
>> “Chronic manifestations of Lyme disease can continue long after other
>> markers of the disease, such as the erythema migrans rash, have resolved,”
>> said Daniel Cameron, M.D., M.P.H., and lead author. “Understanding this
>> reality underlies the recommendation for careful follow-up to determine
>> which individuals with Lyme disease could benefit from additional antibiotic
>> therapy.”
>>
>> ILADS is the first organization to issue guidelines on Lyme disease which
>> comply with the standards set by the Institute of
>> Medicine<http://ilads.us8.list-manage.com/track/click?u=618a4780f78630b439260ac0a&id=eda720d448&e=bd3361534c>
>> for developing trustworthy protocols. The document provides a rigorous
>> review of the pertinent medical literature and contains recommendations for
>> Lyme disease treatment based on the Grading of Recommendations Assessment,
>> Development, and Evaluation
>> (GRADE<http://ilads.us8.list-manage1.com/track/click?u=618a4780f78630b439260ac0a&id=02e3f60668&e=bd3361534c>)
>> process. This review format is used by other well-respected medical
>> organizations<http://ilads.us8.list-manage1.com/track/click?u=618a4780f78630b439260ac0a&id=c4e0518851&e=bd3361534c>
>> including the Cochrane
>> Collaboration<http://ilads.us8.list-manage.com/track/click?u=618a4780f78630b439260ac0a&id=1b574891f5&e=bd3361534c>
>> and the World Health
>> Organization<http://ilads.us8.list-manage1.com/track/click?u=618a4780f78630b439260ac0a&id=1fbf9a278f&e=bd3361534c>.
>>
>> ILADS’ GRADE-based analyses discovered research studies guiding current
>> treatment protocols were of very low quality; and, the regimens based on
>> these randomized controlled trials often failed. “For this reason, we moved
>> away from designating a fixed duration for antibiotic therapy for tick borne
>> illnesses and instead encourage clinicians to tailor therapy based on the
>> patient’s response to treatment,” noted Dr. Cameron.
>>
>> “We not only recommend clinicians perform a deliberate and individualized
>> assessment of the potential risks and benefits of various treatment options
>> before making their initial selection,” said guidelines coauthor Elizabeth
>> Maloney, M.D., “we also recommend careful follow-up. Monitoring a patient
>> allows clinicians to adjust therapy as circumstances evolve. This more
>> selective approach should reduce the risk of inadequate treatment giving
>> rise to a chronic illness,” added Dr. Maloney.
>>
>> The guidelines encourage shared medical decision making and taking patient
>> values into consideration. Lorraine Johnson, J.D., MBA, a coauthor and
>> Executive Director of
>> LymeDisease.org<http://ilads.us8.list-manage.com/track/click?u=618a4780f78630b439260ac0a&id=e4e94524b4&e=bd3361534c>,
>> noted, “A lot of the treatment decisions in Lyme disease depend on
>> trade-offs. How sick is the patient? How invasive is the treatment? What is
>> valued by the patient? Patients need to understand the risks and benefits of
>> treatment options to make informed medical choices,” added Ms. Johnson.
>> “These guidelines provide that information.”
>>
>>
>>
>> ILADS is a nonprofit, international, multidisciplinary medical society
>> dedicated to the appropriate diagnosis and treatment of Lyme and associated
>> diseases.
>>
>>
>> For more information:
>>
>> www.ilads.org<http://ilads.us8.list-manage.com/track/click?u=618a4780f78630b439260ac0a&id=52166ff08d&e=bd3361534c>
>>
>> Facebook<http://ilads.us8.list-manage2.com/track/click?u=618a4780f78630b439260ac0a&id=1a51419f4c&e=bd3361534c>
>>
>>
>>
>>
>>
>> Copyright © 2014 International Lyme and Associated Disease Society, All
>> rights reserved.
>> You are receiving this because you attended or requested information about
>> our conferences or to support the fight against Lyme Disease.
>>
>> Our mailing address is:
>> International Lyme and Associated Disease Society
>> PO Box 341461
>> Bethesda, MD 20827-1461
>>
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