ILADS Treatment Guidelines Listed on National Guidelines Clearinghouse Website

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Martian
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Location: Friesland, the Netherlands

ILADS Treatment Guidelines Listed on National Guidelines Clearinghouse Website

Post by Martian » Tue 22 Sep 2015 16:46

Source: http://www.ilads.org/ilads_news/2015/il ... e-website/
ILADS Treatment Guidelines Are Now Listed on the National Guidelines Clearinghouse Website

September 21, 2015 5:32 pm

FOR IMMEDIATE RELEASE: September 21, 2015

For Media Inquiries:
International Lyme and Associated Diseases Society (ILADS)
Barbara Buchman
lymedocs@ILADS.org
(301) 263-1080

ILADS treatment guidelines are now listed on the National Guidelines Clearinghouse Website.

(Sept 21, 2015) — The Centers for Disease Control and Prevention (CDC) estimates that more than 300,000 new cases of Lyme disease occur annually in the US. ILADS guidelines, Evidence Assessments and Guideline Recommendations in Lyme disease: The Clinical Management of Known Tick Bites, Erythema Migrans Rashes and Persistent Disease” bring the latest scientific evidence to bear on the management of the illness. ILADS is proud to announce their guidelines are now available on the National Guidelines Clearinghouse (NGC) website.

The National Guidelines Clearinghouse (NGC) is an initiative of the Agency for Healthcare Research and Quality (AHRQ), under the umbrella of the U.S. Department of Health and Human Services. The NGC recently adopted the Institute of Medicine (IOM) standards for developing trustworthy guidelines, which define the highest level of excellence that a guideline can achieve. Guidelines posted on the NGC website must now satisfy these standards. Thus, the inclusion of ILADS’s peer reviewed guidelines on the NGC website demonstrates that they meet the level of excellence called for by the IOM.

ILADS is the first organization to issue guidelines on Lyme disease that were developed in accordance with the IOM standards. The document provides a detailed review of the pertinent medical literature and contains the first set recommendations for Lyme disease based on the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) process. This rigorous review format is also used by many other well-respected medical organizations including the World Health Organization (WHO), the American College of Physicians, and the National Institute for Health and Clinical Excellence (NICE) in the UK. ILADS guidelines are the only Lyme disease guidelines that included a patient from the Lyme community as an author or as a member of the guidelines development panel.

ILADS’ GRADE-based analyses found the evidence was of very low quality and regimens based on randomized controlled trials often failed. “For this reason, we moved away from designating a fixed duration for antibiotic therapy and instead encourage clinicians to tailor therapy based on the patient’s response,” noted Cameron, author and president of ILADS.

“We not only recommend that clinicians perform a deliberate and individualized assessment of the potential risks and benefits of various treatment options before making their initial selection, we also recommend careful follow-up because this allows them to adjust therapy as circumstances evolve. This patient-centered approach should reduce the risk of chronic illness due to inadequate antibiotic therapy.” said Elizabeth Maloney, MD, a guidelines coauthor and provider of continuing medical education courses on tick-borne illnesses.

The guidelines include share medical decision making and take patient values into consideration. Lorraine Johnson, JD, MBA, a coauthor and Chief Executive Officer of LymeDisease.org, said “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. These guidelines provide that information.”

ILADS is a nonprofit, international, multidisciplinary medical society dedicated the appropriate diagnosis and treatment of Lyme and associated diseases. For more information, visit http://www.ILADS.org.

paulieinct
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Joined: Tue 25 Nov 2014 16:17

Re: ILADS Treatment Guidelines Listed on National Guidelines Clearinghouse Website

Post by paulieinct » Tue 22 Sep 2015 18:24

This is HUGE. ILADS guidelines are now the ONLY guidelines for Lyme diagnosis and treatment that are validated in accordance with IOM criteria.

This follows on the heels of Alan MacDonald's ground-breaking research showing Bb and Bm persistence in the brain as the cause of Alzheimers.

AND........British billionaire's announcement that his entire family has Lyme after years of misdiagnosis :

http://www.telegraph.co.uk/news/celebri ... sease.html

IDSA/CDC/ALDF cabal is folding like a house of cards. Wormser, Steere, Auerwater, et al have been seen retreating to their bunkers as the angry mobs descend.

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ChronicLyme19
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Location: NY, USA

Re: ILADS Treatment Guidelines Listed on National Guidelines Clearinghouse Website

Post by ChronicLyme19 » Wed 23 Sep 2015 2:01

One step closer to getting persistent borreliosis treatment covered by insurance :woohoo:

When insurance covers it, we'll have many many more heads working to solve this disease :D
Half of what you are taught is incorrect, but which half? What if there's another half missing?

hv808ct
Posts: 256
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Re: ILADS Treatment Guidelines Listed on National Guidelines Clearinghouse Website

Post by hv808ct » Thu 24 Sep 2015 2:16

Well, the ILADS guidelines have managed to sneak back into the Clearinghouse listings, having been previously kicked off. I think we’ll eventually find that pressure from anti-science members of Congress probably had something to do with this restoration. AHRQ was already on the chopping block and they probably didn’t want to attract any additional hostile notice from the keepers of the budget.

As Guidelines, they don’t seem to provide much direction, insisting instead on the importance of clinical judgment, which is fine for I.D.-trained doctors with experience and good judgment. One gets the impression from reading the qualifying statement below that the authors don’t have much faith in their guidelines either. Which is understandable: few US physicians follow them, and no US or European professional medical societies and organizations endorse them.
(See: http://webarchive.nationalarchives.gov. ... 4739293177)


Qualifying Statements- ILADS Guidelines

• International Lyme and Associated Diseases Society (ILADS) guidelines are not intended to be the sole source of guidance in managing Lyme disease and they should not be viewed as a substitute for clinical judgment nor used to establish treatment protocols.
• This panel has placed a high value on the ability of the clinician to exercise clinical judgment. In the view of the panel, guidelines should not constrain the treating clinician from exercising clinical judgment in the absence of strong and compelling evidence to the contrary.
• The state of the evidence in the diagnosis and treatment of Lyme disease is limited, conflicting and evolving. Accordingly, the recommendations in these guidelines reflect an evidence-based, patient-centered approach that many clinicians will find helpful; they are not intended to be viewed as a mandate or as a legal standard of care. Guidelines are not a substitute for clinical judgment. ILADS encourages clinicians to consider the specific details of an individual patient's situation when determining an appropriate treatment plan.

And who concocted these guidelines? It looks like two private practice MDs and a lawyer.
Top-notch expertise?

Composition of Group That Authored the Guideline
Working Group Members: Daniel J Cameron, International Lyme and Associated Diseases Society, Bethesda, MD;
Lorraine B Johnson, Lymedisease.org, Chico, CA;
Elizabeth L Maloney, Partnership for Healing and Health Ltd, Wyoming, MN


And the Consensus Committee—whatever that is—is a somewhat larger batch of well-known private practice hacks, the same lawyer again, and various other hangers-on. Not an I.D. expert among them. I guess they didn’t want to taint the guidelines with actual expertise, knowledge, skill and judgment.

Guideline Consensus Committee Members:
Robert Bransfield, MD, DFAPA, Riverview Medical Center, New Jersey;
Daniel Cameron, MD, MPH, Mt. Kisco, New York;
Andrea Gaito, MD, Basking Ridge, New Jersey;
Christine Green, MD, San Francisco, California;
Lorraine B. Johnson, JD, MBA, Lymedisease.org, Chico, California;
Judith Leventhal, PhD, Manhattan, New York;
Tom Moorcroft, DO, Berlin, Connecticut;
Leo Shea, PhD, Rusk Institute Manhattan, New York;
Samuel Shor, MD, FACP, George Washington University Health Care Sciences. Reston, Virginia;
Raphael Stricker, MD, San Francisco, California


Now for some reason, these almost 2-year-old guidelines are being praised by Lyme activists for allegedly following the suggested recommendations of an IOM committee about how guidelines would be formulated in a perfect world. (See: http://www8.nationalacademies.org/onpin ... rdID=13059)

This seems odd because at an earlier IOM committee on Lyme and other tick-borne diseases activists denounced the committee, boycotted it, occasionally got hysterical about, and I believe, tears were shed during some of the committee meetings.
(See: http://www.nap.edu/catalog/13134/critic ... e-diseases for the IOM meeting, and)

(this URL for the activist hysteria: http://www.lymediseaseassociation.org/i ... rkshp-rept)

So, one IOM committee good, one IOM committee bad? I guess the activists liked what they heard in one committee, but not what they liked in another.

In the end, I think ILADS has produced a piece of paper behind which quack doctors can hide by saying they’re just following “professional guidelines,” and patients can wave that same paper in front of other doctors and institutions and demand to be treated in accordance with “professional guidelines.” Perhaps that’s why they left out all the crazy stuff about LD causing Alzheimer’s, autism, Morgellons, and being a STI.

The fundamental problem, of course, is the guidelines don’t work. If they did, there won’t be any activists and online patients bemoaning their various illnesses, syndromes, and symptoms. They’d have been “cured.” They’re not.

duncan
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Re: ILADS Treatment Guidelines Listed on National Guidelines Clearinghouse Website

Post by duncan » Thu 24 Sep 2015 3:00

hv808ct: "The fundamental problem, of course, is the guidelines don't work. If they did, there won't be (sic) any activists and online patients bemoaning their various illnesses, syndromes, and symptoms. They'd have been 'cured'. They're not."

:shock:

Just to clarify, whose guidelines are you talking about?

Lorima
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Joined: Mon 29 Oct 2007 20:47

Re: ILADS Treatment Guidelines Listed on National Guidelines Clearinghouse Website

Post by Lorima » Thu 24 Sep 2015 4:49

:lol:
"I have to understand the world, you see."
Richard Feynman

TwiceBitten
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Joined: Wed 12 Feb 2014 17:06

Re: ILADS Treatment Guidelines Listed on National Guidelines Clearinghouse Website

Post by TwiceBitten » Thu 24 Sep 2015 21:23

hv808ct wrote:As Guidelines, they don’t seem to provide much direction, insisting instead on the importance of clinical judgment, which is fine for I.D.-trained doctors with experience and good judgment.
Where might those with both experience and good judgement be hiding?

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