(11th of 20 or so Jenna Luche-Thayer articles I'm posting - I started with her most recent articles but now I'm going back in time and posting several other articles she has created - also posting in its entirety since some might not want to access through LinkedIn) Will the NPR Lyme News follow that of Gawker site Jezebel?
By Jenna Luche-Thayer
April 1, 2016/www.linkedin.com/pulse/npr-lyme-news-follow-gawker-site-jezebel-jenna-luche-thayer?trk=mp-reader-card
Greetings from Jenna,
On March 27, 2016 The Boston Globe Editorial featured “Lyme bill a prescript
ion for trouble.” [Ref 1]
On March 29, 2016 Gawker Media blog Jezebel presented “How Celebrities Are Changing the Way We See Chronic Lyme” by Stassa Edwards. [Ref 2]
On March 30, 2016 the National Public Radio (NPR) delivered Lyme news via “shots Health News from NPR”. The article is “Study: Prolonged Antibiotic Treatment Gave No Relief for Lasting Lyme Symptoms” by Angus Chen. [Ref 3]
All three of these Lyme-focused articles promote, with differing levels of finesse and skill, the Lyme guidelines that were written by one private organization. The name of this private organization is the Infectious Disease Society of America or IDSA. The IDSA promotes the view that Lyme disease is easy to diagnose and simple to treat with a limited course of antibiotics.
Not one of these articles mentions that on February 12, 2016, the IDSA Lyme guidelines were removed from the National Guidelines Clearinghouse (NGC). [Ref 4] The outdated IDSA guidelines did not meet current NGC criteria nor comply with the Health and Medicine Division (HMD - formerly the Institute of Medicine) Standards for Developing Trustworthy Clinical Practice Guidelines and the Grading of Recommendations Assessment, Development and Evaluation (GRADE) Working Group standard.
“The HMD is a division of the National Academies of Sciences, Engineering, and Medicine (the Academies). The Academies are private, nonprofit institutions that provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions related to science, technology, and medicine. The Academies operate under an 1863 congressional charter to the National Academy of Sciences, signed by President Lincoln…HMD’s aim is to help those in government and the private sector make informed health decisions by providing evidence upon which they can rely.” [Ref 5]
The U.S. Department of Health & Human Services’ (DHHS) National Guidelines Clearinghouse (NGC) house is “a public resource for evidence-based clinical practice guidelines.” The IDSA Lyme guidelines also failed to meet the criteria of the NGC.
The failure of the IDSA Lyme Guidelines to meet both the independent HMD and federally generated science-based criteria has not prevented two DHHS institutions from continued promotion of the IDSA Lyme Guidelines. These two DHHS institutions are the CDC and National Institutes of Health. [Ref 6]
These same Lyme-focused articles omit or dismiss the Lyme guidelines that were written by the International Lyme and Associated Diseases Society (ILADS). ILADS recognizes that Lyme disease is a complex and serious illness of epidemic proportion and offers individualized patient-centered treatments. It should be noted that ILADS guidelines are posted on the federal NGC and conform to criteria based on the high evidentiary standards of the HMD. [Ref 7]The timing of the pro-IDSA articles, appearing one after the other, on various media platforms are curious in the face of the IDSA Lyme Guidelines removal from the NGC. How many additional pro-IDSA articles will appear in which media outlets? How long will the pro-IDSA roll out will continue? Is there is a big reveal at the end of this media effort? It is an orchestrated effort or simply a series of coincidences? Time will tell.
For example, the Jezebel pro-IDSA blog article targets millennial women. This article presents Lyme as a disease du jour for spoiled celebrities. Author Stassa Edwards’ use of patient-shaming language and conspiracy ideas appear to be pilfered from the 2011 Lancet Infectious Diseases article presented as a “Personal View” and titled “Antiscience and ethical concerns associated with advocacy of Lyme disease” by principal author Paul G Auwaerter.
The blog and Stassa Edwards are linked to numerous media outlets. The Jezebel blog is regularly picked up by numerous internet media sites including:
Jezebel is managed along with other blogs such as Gawker, Deadspin and Kotaku by parent media company Gawker Media. Stassa Edwards free lances for [Ref 9]:
The New Inquiry,
Public Domain Review,
Women’s Media Center,
Chicago Art Journal, and
It will be curious if any of these other media platforms post pro-IDSA messages. A review of the Boston Globe’s “Lyme bill a prescription for trouble” shows numerous flaws in logic and understanding. It states that “Lawmakers may have good intentions, but they don’t possess the expertise to decide whether it’s beneficial, cost-efficient, or safe, to keep using strong medicines to treat a condition the medical establishment doubts is real.”
(my note: here is a thread that includes her full critique on the Boston Globe's poorly written editorial:www.healingwell.com/community/default.aspx?f=30&m=3682363
A thoughtful read of the Lyme bill would have helped the author to understand that the bill’s decision-making power for Lyme treatment lies in the hands of those who are responsible for care, namely the medical practitioners who treat Lyme patients. [Ref 10] Furthermore, the bill does not dictate the duration of treatment, it expands Lyme treatment options and ensures that all options are covered by health insurance. Treatment options for medical conditions are routine in modern medicine practices.
This bill also supports patient-centered care. The HMD defines patient-centered care as: "Providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions." This is a common goal in most medical communities across the nation.
The editorial’s author(s) did appear to understand that the Lyme bill expands insurance coverage. Without the passing of Bill H.901 “An Act relative to Lyme disease treatment coverage” the majority of Massachusetts’ Lyme patients will be unable to access treatment options unless they pay for them out of pocket. This would put care options beyond the reach of many families and individuals. Furthermore, the continuation of such financial obstacles would appear to be discriminatory in nature.
The editorial’s closing statement that the ‘answer should come out of the medical lab, not a legislature’ indicates a lack of understanding as to how state legislature works. There is a long standing Joint Committee on Public Health that routinely makes ‘answers to its constituents’ as its mandate is “it shall be the duty of the committee on Public Health to consider all matters concerning the public health of the Commonwealth and such other matters as may be referred. ” [Ref 11] As of today, there are five public health bills ‘in committee’ and are seven public health bills ‘out of committee.’
Unlike Jezebel and the Boston Globe, NPR’s article appears to be even handed in the way it presents both IDSA and ILADS and their differing views regarding Lyme. However, further review of NPR’s “Study: Prolonged Antibiotic Treatment Gave No Relief for Lasting Lyme Symptoms” uncovers a number of notable anomalies.
After a few introductory paragraphs, the NPR article devotes roughly 532 words to the topic and presents two differing views regarding the validity and implications of the study’s findings. Of these 532 words, 455 words are devoted to the views supported by the IDSA. Seventy seven of the 532 words are allowed for the opposing view held by ILADS. In addition to unbalanced word measure, there are discrepancies regarding disclosures of experts’ affiliations and unbalanced citations of supporting research.
The article quotes one expert in support of the ILADS Lyme Guidelines. Author Chen introduces and identifies expert Dr. Raphael Stricker as an ILADS board member.
The article quotes two experts in support of the IDSA Lyme Guidelines. Dr. Paul Auwaerter, is presented as an infectious disease specialist at the Johns Hopkins University School of Medicine who is in support of the IDSA Lyme Guidelines. NPR author Chen makes no mention of Auwaerter’s long standing membership in the IDSA. [Ref 12]
Dr. Bart-Jan Kullberg is introduced as the “senior author on the study and an infectious disease researcher at Radboud University in the Netherlands.” Kullberg is the article’s de facto second expert to speak in favor of IDSA views over that of ILADS. If Chen had done background research regarding Kullberg, he would have discovered that Kullberg has been closely affiliated with the IDSA for a number of years. For example, Kullberg authored a study that became a 2010 IDSA copyright and participated in a study designed specifically to disprove one of the ILADS Lyme protocols. [Ref 13] [Ref 14]
The NPR article states that “There have been four other clinical trials, funded by the NIH, that have come to the same conclusion as Kullberg's study and none suggested long-term antibiotics helped.” The author does not reference even one of more than seven hundred peer-reviewed and published evidence-based studies that show persistent Lyme infection nor responses to various protocols. [Ref 15]
Like Jezebel author Edwards, NPR’s Chen also references the 2011 editorial in The Lancet Infectious Diseases, wherein Auwaerter and coauthors were highly critical of Lyme advocacy organizations and ILADS. Auwaerter and coauthors claimed such groups had created "a parallel universe of pseudoscientific practitioners, research, publications and meetings."
However, ILADS did not create the HMD, the NGC or the DHHS. Furthermore, it is the failure to meet both the HMD and NGC science-based criteria that resulted in the removal of the subpar IDSA Lyme Guidelines from the NGC.
Furthermore, the Lancet article to which Chen refers, also dismisses and trivializes a number of debilitating Lyme symptoms and complications. [Ref 16] The same article suggests that Lyme advocates can be characterized as a physical threat to true Lyme scientists and academics and that unknown, yet powerful and moneyed anti-science groups control and dispatch the advocates for nefarious purposes.
Chen cleaves to Auwaerter’s mischaracterization that Lyme patients who have symptoms after a month of treatment are hopeless cases, regardless of other Lyme treatment options. [Ref 17] In fact, many Lyme patients have improved health when provided patient-centered protocols.In closing, let’s watch how many media platforms absorb and regurgitate the pro-IDSA message. Let’s pay attention to the gaslighting techniques that characterize pro-IDSA articles. Let’s see how many quote IDSA member and expert Auwaerter, the promoter of conspiracy ideas such as dangerous Lyme advocates are controlled by anonymous powerful groups. Let’s see how many acknowledge that the IDSA Lyme Guidelines have been removed from the NGC for failure to meet high evidentiary standards. Let’s see how many cite references for evidence of persistent Lyme infection or the role of co-infections. Let’s note how many describe Lyme patients in a dismissive, snarky, hopeless or condescending manner. And, let us all compare our notes.
It is a sad day indeed when the objectivity, balance and accuracy of NPR’s Lyme news differs little from that of Gawker blog Jezebel.
Thanks - Jenna
Jenna Luché-Thayer’s expertise includes government transparency and accountability and the integration of marginalized groups. Luché-Thayer is informed by three decades of professional policy and grassroots experience in 40 countries. She has extensive experience in congressional relations, testimony and legislation. She has worked with governments, the United Nations, nonprofits and the corporate world and has over 65 sponsored publications. Luché-Thayer received the International Woman’s Day Award for Exemplary Dedication and Contributions to Improving the Political and Legal Status of Women (US government) and built the Highest Ranking Technical Area in Accomplishment, Innovation & Comparative Advantage for United Nations Capital Development Fund.
[Ref 1] /www.bostonglobe.com/opinion/editorials/2016/03/27/elyme/krQE58413hT6L8Mz0IwYMI/story.html
[Ref 2] jezebel.com/how-celebrities-are-changing-the-way-we-see-chronic-lym-1764109037?
[Ref 3] www.npr.org/sections/health-shots/2016/03/30/472411123/study-prolonged-antibiotic-treatment-gave-no-relief-for-lasting-lyme-symptoms
[Ref 4] www.guideline.gov/
[Ref 6] www.cdc.gov/lyme/treatment/index.html
[Ref 7] www.guideline.gov/content.aspx?id=49320&search=lyme+disease+and+ilads+guildlines
[Ref 8] www.thelancet.com/journals/laninf/article/PIIS1473-3099(11)70034-2/fulltext
[Ref 9] https://www.linkedin.com/in/stassa-edwards-8220a2a2?authType=NAME_SEARCH&authToken=yRSo&locale=en_US&trk=tyah&tr
[Ref 10] /malegislature.gov/Bills/189/House/H901
[Ref 11] /malegislature.gov/Committees/Joint/J16
[Ref 12] www.hopkinsmedicine.org/profiles/results/directory/profile/0000525/paul-auwaerter
[Ref 13] jid.oxfordjournals.org/content/201/12/1849.long
[Ref 14] see Persistent Lyme Empiric Antibiotic Study Europe (PLEASE) “The purpose of the study is to establish whether prolonged antibiotic treatment of patients diagnosed with (Proven or Possible Persistent Lyme Disease) PLD as endorsed by the international ILADS guidelines…”/clinicaltrials.gov/ct2/show/NCT01207739?term=PLEASE&rank=18
[Ref 15] www.ilads.org/ilads_news/wp-content/uploads/2015/09/EvidenceofPersistence-V2.pdf
[Ref 16] www.thelancet.com/journals/laninf/article/PIIS1473-3099(11)70034-2/fulltext
[Ref 17] /sites.newpaltz.edu/ottaway2014/wp-content/uploads/sites/34/2014/04/cdc-data.jpg?w=156
Her other articles:
Link to 1st article + thread: "CDC Sabotages State laws to protect Lyme patients"www.healingwell.com/community/default.aspx?f=30&m=3672003
Link to 2nd article + thread: "CDC Rejects Evidence-based medicine for Lyme patients"www.healingwell.com/community/default.aspx?f=30&m=3672006
Link to 3rd article + thread: " CDC Evades accountability in Lyme epidemic"www.healingwell.com/community/default.aspx?f=30&m=3672010
Link to 4th article + thread: "Lyme Patients Stigmatized and Scapegoated with Federal Support:www.healingwell.com/community/default.aspx?f=30&m=3675093&g=3675093#m3675093
Links 5th article + thread: "CDC Lyme Policy Cripples Obamacare & Sanctions Insurance Discrimination"www.healingwell.com/community/default.aspx?f=30&m=3681041
Links to 6th article + thread: Mar 17, 2016 - Update 7A - Lyme Corps Assessment Brief, part 1 of 2: www.healingwell.com/community/default.aspx?f=30&m=3683408
Links to 7th article + thread: Mar 18, 2016 - Update 7B - Lyme Corps Assessment Brief, part 2 of 2: www.healingwell.com/community/default.aspx?f=30&m=3683417
Links to 8th article + thread: Ethics Complaints - CDC's Preferential Treatment for IDSA https://www.healingwell.com/community/default.aspx?f=30&m=3683427
Links to 9th article + thread: Comments from YOU Regarding Lyme Corps & CDC's Lyme Failures https://www.healingwell.com/community/default.aspx?f=30&m=3683435
Links to 10th article + thread: CDC Lyme Programs Routinely Flout Federal Procedureswww.healingwell.com/community/default.aspx?f=30&m=3683452
Post Edited (Pirouette) : 8/14/2016 5:35:39 PM (GMT-6)