Stuur commentaar voor IDSA-richtlijn, vóór 9 april!

[Josie]

De IDSA, AAN en ACR werken aan een nieuwe Amerikaanse richtlijn voor de behandeling van de ziekte van Lyme!
http://www.idsociety.org/templates/content.aspx?id=32212267305#

Hun tijdelijke 'aanbod':
Stuur vóór 9 april feiten naar hen op, in de vorm van wetenschappelijke bewijsstukken (en evt. aangevuld met je eigen ervaring) over het persisteren van de ziekte, de falende diagnosemethoden, de effectiviteit van langere antibiotica en medicatie-combinaties, en de noodzaak tot meebehandelen van co-infecties!

De vorige IDSA-richtlijn heeft vooral de chronische lyme-patiënten afschuwelijk veel ellende bezorgd, nu is er weer een nieuwe kans om aan te grijpen om als patiënten gehoord te worden en erkenning te kunnen krijgen!

De Nederlandse CBO-richtlijn is gebaseerd op de Amerikaanse IDSA-richtlijn en is er op een bizarre wijze doorheen gedrukt… de richtlijn is onvolledig, tendentieus en misleidend! Nu is (weer) de beste tijd om onze frustraties en wanhoop (weer) te benutten en om te zetten in actie om verbetering voor onze situatie te krijgen!

Lees ook de reacties, ideeën en initiatieven op lymeneteurope om samen sterker te staan:
http://www.lymeneteurope.org/forum/viewtopic.php?f=7&t=5714

En lees het commentaar op de CBO-richtlijn door Robert Bolderdijk 2012 http://www.borreliose.nl hier:
http://www.borreliose.nl/images/stories/Commentaar%20op%20de%20CBO%20richtlijn%204-3%20final_anne.pdf

En voor betere richtlijnen kijk hier:
Internationale ILADS-richtlijn 2014
http://www.ilads.org/lyme/treatment-guideline.php
en hier:
Met grote dank aan Robert Bolderdijk hier de Nederlandse vertaling van de oude ILADS richtlijn uit 2004 (die nieuwe is nog niet vertaald, maar de oude is nog steeds zeer bruikbaar en verschilt weinig van de nieuwe)
http://www.borreliose.nl/Literatuur/ILADS%20richtlijnen.pdf

en hier:
Duitse DBG-richtlijn
http://www.borreliose-gesellschaft.de/Texte/guidelines.pdf

En kijk hier de film Under Our Skin:
https://www.youtube.com/watch?v=khUQMq-5UCU
En hier het vervolg ervan Under Our Skin 2 Emergence
https://www.youtube.com/watch?v=oLSzclJAdLA&feature=youtu.be



Dit is het betreffende stuk van de IDSA:
http://www.idsociety.org/templates/content.aspx?id=32212267305#

Public Comment Period for IDSA/AAN/ACR Lyme Disease Guideline Project Plan
Comment Period Closes April 9

The Infectious Diseases Society of America (IDSA), the American Academy of Neurology (AAN) and the American College of Rheumatology (ACR) are jointly developing a systematic review and guideline on treatment of Lyme disease.

The author composition is made up of representatives from IDSA, AAN, and ACR with representation from the American Academy of Family Physicians (AAFP), American Academy of Pediatrics – Committee on Infectious Diseases (AAP-COID), American Academy of Pediatrics – Section on Emergency Medicine (AAP-EM), American College of Physicians (ACP), Association of Medical Microbiology and Infectious Diseases – Canada (AMMI-CA), Child Neurology Society (CNS), Pediatric Infectious Diseases Society (PIDS), Entomological Society of America (ESA), and European Society of Clinical Microbiology and Infectious Diseases (ESCMID). We also have members representing the disciplines of cardiology, microbiology and pathology, a consumer representative and a methodologist with expertise in GRADE.

The societies are utilizing the IDSA guideline development process, which includes a conflict of interest review of the guideline’s authors. In addition, the societies will make every effort to develop the guideline in accordance with the Standards for Developing Trustworthy Clinical Practice Guidelines developed by the Institute of Medicine (IOM). As part of the final document, the societies will complete a self-assessment checklist reviewing adherence to the IOM Standards.

At this time, IDSA, AAN and ACR request your input on a project plan that lays the ground work for new Lyme Disease Guidelines.

The 30-day open Public Comment period on the Lyme Disease Guideline Project Plan is from March 9 to April 9. It will be available on the IDSA Website between these two dates. During the Public Comment period, anyone may comment on any aspect of the Plan, including the methodology and development process utilized as well as adherence to the IOM standards. All comments must be submitted through this link. Please note that you will need to submit your comments in one sitting. Therefore, you may wish to review the Plan and place your comments in a Word document and when you're ready, copy and paste them into the comment field in the survey.

The full Project Plan and link to the data collection mechanism can be found below.
Note: When submitting comments, do not include medical information about yourself or another person.

Project Plan
Comment Form

After the Public Comment Period is closed, what happens next?
The guideline development panel will consider all comments received through the online data collection mechanism, within the dates of the Public Comment period.
A summary response from the Panel to the comments received will be posted on the IDSA website following the close of the Comment Period.
After a draft of the full guideline is developed, it will also be posted on the IDSA website for a 30-day public comment period. Additional information on the timing and availability of this draft will be posted to the IDSA website later this year.

See more at: http://www.idsociety.org/templates/content.aspx?id=32212267305#sthash.ekLwDFMW.dpuf

Josie

[Lola Lyme]

IDSA Guidelines Revision Process: Cause for alarm?
written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org
18th March 2015

The Infectious Diseases Society of America recently announced that it will finally be updating its Lyme disease guidelines. They have opened a 30-day window for the public to comment on their guideline development process. I’ve only had a few days to review their proposal, but I am deeply concerned by what I see.

Unless the IDSA’s process has integrity, this will turn out badly for Lyme patients. And the IDSA’s process already appears to lack integrity. Why do I say this? Because, if the right people are not included in the discussion, the right questions won’t be asked. If bias is not checked, it will run amuck and taint the entire process. Those sitting in the room essentially will be in an echo chamber listening to their own viewpoints repeated back to themselves over and over. Consensus will be achieved, not by careful deliberation, but by excluding opposing viewpoints.

Lees meer
Lees meer (google Nl) Bron: LymeDisease.org

[Sproetje]

Hun tijdelijke 'aanbod':
Stuur vóór 9 april feiten naar hen op, in de vorm van wetenschappelijke bewijsstukken (en evt. aangevuld met je eigen ervaring) over het persisteren van de ziekte, de falende diagnosemethoden, de effectiviteit van langere antibiotica en medicatie-combinaties, en de noodzaak tot meebehandelen van co-infecties!

Ik wil het wel doen, maar zit een beetje met de referenties die er worden gevraagd.
Het punt is n.l. dat mijn behandeling na mijn tekenbeet het klassieke voorbeeld is van persiterende lymeziekte door de onjuiste richtlijnen.
Nu wil ik natuurlijk graag mijn verhaal vertellen, maar ja, moet ik dan mijn medisch dossier van de huisarts mee opsturen???
Want al de andere wetenschappelijke onderzoeken liggen allang bij de idsa op tafel:
M.n. het onderzoek van Embers et al. is ook bij hen allang bekend:
http://journals.plos.org/plosone/articl ... ne.0029914

In 2012 was er goede hoop dat de richtlijnen zouden worden veranderd:
http://lymedisease.org/news/lymepolicywonk/898.html

Het is onbegrijpelijk dat het veranderen van een paar richtlijnen zo veel moeite kost bij het IDSA
In Nederland zie je precies hetzelfde bij de CBO richtlijnen.
De grootste lariekoek die er bestaat, en dient de lyme patient niet.

[Lola Lyme]

Een hele belangrijke petitie voor Lyme patiënten

REMOVE OUTDATED IDSA GUIDELINES FROM NGC!
Why We Protest Against The IDSA

The Centers for Disease Control and Prevention (CDC) recently made headlines by releasing new estimates of how many people catch Lyme disease every year. They increased the number ten-fold, from 30,000 to 300,000. However, nothing has changed about how Lyme disease is diagnosed and treated. Or, more often, NOT diagnosed and NOT treated.

Untold thousands of Lyme patients across the United States are denied access to appropriate medical care because the CDC promulgates Lyme treatment guidelines put forth by the Infectious Diseases Society of America (IDSA). The IDSA is a private medical association that doesn't have to answer to anybody. The CDC is a federal agency that essentially allows the IDSA to set its policy regarding Lyme disease.

Medical treatment guidelines are tremendously important. Guidelines for most diseases are listed by the National Guidelines Clearinghouse (NGC), which is part of the US Department of Health and Human Services. It's the government's way of providing updated information to health care professionals. Doctors consult guidelines to help them determine how best to treat their patients and insurance companies use them to decide what treatments to pay for. The current IDSA Lyme guidelines misrepresent science and restrict access to care.

Lees meer en teken petitie
Lees meer en teken petitie (google Nl)

[Sproetje]

Ik heb de petitie getekend.
Hier nog wat extra informatie over de hele opzet die natuurlijk heel erg slim is gedaan:


Please take a moment to review the IDSA’s “Project Plan” at the following link:

http://www.idsociety.org/uploadedFiles/IDSA/Guidelines-Patient_Care/PDF_Library/LD%20Project%20Plan%20March%202015(2).pdf

As you read through the list of panelists you will find no representation from the courageous physicians actively treating the late-stage Lyme epidemic your constituents are currently experiencing. To my knowledge none of the panelists, conflict of interest review group or author of the project plan is on the front lines treating the late-stage Lyme epidemic sweeping across the globe. Do you truly believe this happened by accident?

We need to ask the question: “Why are these select few controlling the narrative?”

This is reminiscent of the “Flat Earth Society” where opposing knowledge was not allowed while pseudoscience and a disinformation campaign were used as propaganda.

Lees meer in deze link:

https://www.change.org/p/the-us-senate- ... dium=email

[Sproetje]

Lyme Patient Advocates Meet with IDSA President, Discuss Concerns About Guidelines Review Process

Arlington, VA – WEBWIRE – Tuesday, March 24, 2015

http://www.webwire.com/ViewPressRel.asp ... RHdPPzF86Y

Representatives from The Mayday Project Lyme patient advocacy group met with Infectious Diseases Society of America (IDSA) President, Dr. Stephen Calderwood, on Friday, March 20, to discuss concerns about the IDSA’s guidelines for diagnosis and treatment of Lyme disease

The 90-minute meeting took place via teleconference and was attended by Mayday Project co-founders Josh Cutler and Allison Caruana, along with lead researcher Saby Molina. According to Cutler, this was the first time the IDSA leadership has met with a Lyme patient advocacy group.

.............

During IDWeek, Mayday released an open letter to IDSA members calling on them to intervene on the behalf of patients to help rectify the guidelines in the interest of improving patient care. The letter called on the IDSA leadership to work with a sense of urgency to develop a national action plan to stem the rapidly spreading epidemic of Lyme disease and related tick-borne illnesses

Following IDWeek, the Mayday Project established a dialog with then President-elect Calderwood and began a cordial, yet frank and persistent, correspondence focused on correcting deficiencies with the current guidelines, and more recently on addressing concerns with IDSA’s project plan to update the guidelines that was announced on March 9. The plan includes a 30-day period for public comments

..............

Following the meeting, Cutler posted on the Mayday Project’s Facebook page that Dr. Calderwood was receptive to Mayday’s concerns and agreed that much is still unknown about Lyme disease, that current testing methods are unreliable, and that better diagnostic tools are needed.

.............

Mayday expressed strong concerns about the inclusion of panelists with significant conflicts of interests, especially with those who also coauthored the 2006 guidelines. The Lyme Disease Association report, Conflicts of Interest in Lyme Disease: Laboratory Testing, Vaccination and Treatment Guidelines, documents the most serious conflicts of interests among past and current members of IDSA’s review panels.

............

[Sproetje]

Het Mayday Project is gevormd door een groep vrijwilligers die zelf de ziekte van lyme hebben.
Mayday pleit voor meer accurate testen, betere richtlijnen, betere toegang tot behandeling, verhoogd onderwijs voor artsen,
en meer financiering voor onderzoek

http://www.themaydayproject.org/

[Sproetje]

Please, post a comment:

http://lymedisease.org/news/lyme_diseas ... ment-12260

Sin Hang Lee on March 22, 2015 at 9:12 pm said:


I have submitted my comment on time. I would like to post my comment for the record in case this panel decides to throw my comment into the rubbish can. Here is my comment submitted:

“In this Lyme Disease Guideline Project Plan, a conspicuous absence is any mention of nucleic acid-based laboratory tests for molecular diagnosis of early Lyme borrelioses although PCR was considered relevant when babesiosis was a differential diagnosis (page 13, line 220). Is this omission of PCR for Lyme disease intentional? If not, please add PCR/sequencing to the project plan. We are in an era of molecular personalized medicine in the year of 2015, almost 40 years after Lyme arthritis was first described.

According to Part 13 in a series on the NSF-NIH-USDA Ecology and Evolution of Infectious Disease (EEID) Program published recently, Ebola, Dengue fever and Lyme disease have been identified as the three infectious diseases with growing economic cost to society [1].

When we face Ebola, a highly contagious disease with very high mortality rates, RT-PCR and DNA sequencing of a 346 bp RT-PCR amplicon of a signature segment of the viral RNA is the accepted standard laboratory test to diagnose Ebola patients for early intervention [2]. No medical scientist in his or her right mind would suggest measuring antibody levels or antibody patterns to screen Ebola patients for isolation and for early intervention.

It is questionable why the experts in this project plan insist on using antibody tests to diagnose a bacterial infectious disease, an obvious deviation from the standard practice of clinical microbiology in dealing with Lyme disease which is really a systemic infection with periodic bacteremia. Do the IDSA members advocate using Widal test, instead of blood culture, to diagnose typhoid and paratyphoid fevers now? I don’t think do. Therefore, to put it bluntly this Lyme Disease Guideline Project Plan is nothing but a sham designed to maintain the status quo of a dysfunctional system.

Dr. Sin Lee is de directeur van Milford Molecular Diagnostics
Zij zorgen voor DNA sequencing-based testen voor de ziekte van lyme
en lyme zoals borrelioses
Milford, Connecticut.
Het lab. van Dr. Lee had onlangs een lyme infectie geconstateerd bij een jongetje
van 16 jaar oud die eerst een foute diagnose had gekregen dmv van de
standaard gebruikte antilichamen test, waardoor dit jongetje in een psychiatrische kliniek
werd opgenomen.


Hierin staat een link naar het lab. van Dr. Sin Lee:
http://www.businesswire.com/news/home/2 ... BH0jk0cSUl

[Josie]

NEWS: Real lives. Real stories. From the IDSA Lyme survey.
April, 24, 2015
http://www.lymedisease.org/real-stories-idsa-survey/

De mensen van http://www.lymedisease.org hebben een onderzoek gehouden onder 6100 patiënten en nu de resultaten hiervan naar de IDSA gestuurd! Dit geeft een heel goed en duidelijk totaalbeeld. Klik hier om het te bekijken:
http://www.lymedisease.org/wp-content/uploads/2015/04/lymedisease.org-patient-survey-20151.pdf

According to Lorraine Johnson, JD, Chief Executive Officer of LDo, “The IDSA guidelines process excludes the very people who should matter the most—the patients. The goal of guidelines should be to help sick people get well. For too many, these guidelines do the opposite. They abandon seriously ill people to lives of pain and disability. They deny them a diagnosis and they deny them treatment.”

Josie