If true, Shapiro on TBD Working Group will outrage Lyme community
The Infectious Diseases Society of America (IDSA) has announced on its website that Yale pediatrician Dr. Eugene Shapiro has been named to the federal Tick-Borne Disease Working Group. So far, there has been no confirmation of this from the Department of Health and Human Services (HHS).
If true, this development will likely spark outrage in the Lyme community, where Shapiro is widely viewed as working against the interests of patients.
Let us count the ways
Here are some of the reasons Shapiro is viewed as anti-patient: He has testified in court against Lyme-treating doctors, including Connecticut pediatrician Charles Ray Jones, seeking to get their medical licenses revoked. He has helped insurance companies deny disability benefits to Lyme patients. He has financial conflicts of interest related to vaccines.
Shapiro dismisses out of hand the concept of “chronic Lyme disease,” casting aspersions on Lyme patients, their treating physicians, and any supporting research they point to. (“Fake research,” he calls it in this article.)
He served on the IDSA’s 2006 Lyme guidelines panel, and was called out by then-Connecticut Attorney General Richard Blumenthal for flagrant financial conflicts of interest.
Currently, he is a named defendant in Torrey v. IDSA et al, a federal lawsuit filed by a group of Lyme patients. It charges the guidelines authors and eight insurance companies with conspiring to deny medical care to Lyme disease patients.
He also receives royalties from “Up to Date,” a point-of-care software system used by doctors to look up information about various medical conditions and treatments. (Sort of an online version of the IDSA Lyme guidelines.)
Financial conflicts of interest
An article co-authored by Dr. Ray Stricker and Lorraine Johnson (both of whom are board members of LymeDisease.org) lists some of Shapiro’s financial conflicts of interest. (These conflicts are no secret. Shapiro himself has reported them in journal articles he has published.)
As the chart below shows, Shapiro has served as an expert witness in medical-malpractice cases related to Lyme disease; he has reviewed claims of disability related to Lyme disease for Metropolitan Life Insurance Company; and he has received speaker’s fees from Merck and Sanofi-Aventis (pharmaceutical companies that develop vaccines).
Shapiro is also a board member of the American Lyme Disease Foundation. Many in the Lyme patient community view the ALDF as merely a mouthpiece for the IDSA. (See The bogus grassroots of the American Lyme Disease Foundation. )
Text of IDSA announcement:
IDSA member Eugene Shapiro, MD, FIDSA has been selected to serve on the second session of Department of Health and Human Service’s (HHS) Tick-borne Disease Working Group, which resumes its activities with an in-person meeting in Washington, DC on June 4. IDSA engagement in this group is essential to promote evidence-based approaches to treating tick-borne diseases.
The first session of the TBD Working Group began in December 2017 and culminated with the publication of its report in December of 2018. IDSA supported many of the report’s recommendations, including its calls for more funding in areas like tick epidemiology, vector control, and basic research. However, we expressed serious concerns about the report’s recommendations to require insurance companies to cover any treatment prescribed for Lyme disease, and to protect physicians from any professional repercussions for administering potentially harmful treatments to patients that have no evidence-based research behind them. HHS did not publicize this report and it has received very little attention from policymakers.
LymeDisease.org has contacted HHS for clarification, but we have not heard back yet. As of this writing, we do not know who else has been named to the Working Group.
This isn’t just a NO. This is a HELL NO.
This 2011 newscast shows Shapiro in typical fashion – deny, deny, deny.
When asked if Lyme was a national crisis, Shapiro answers, “No.”
Are you for real? The numbers are only growing and it’s something like 430,000 NEW cases of Lyme per year. That’s twice as much as breast cancer and nearly 6 times greater than HIV/AIDS.
He claims Lyme disease is easy to diagnose.
I guess he hasn’t read the memo that Lyme mimics over 300 different diseases, is pleomorphic and polymicrobial, meaning there are numerous other pathogens at play making each case uniquely different, necessitating different medications, as well as the fact current 2-tiered testing misses over half of all cases.
Sure, easy peasy.
He also accuses Lyme literate doctor’s of only diagnosing Lyme disease and not considering other diseases. This is flat-out untrue. These LLMD’s are TRAINED doctors just like him. The only difference is they are educated not only on standard conditions but also on the complexity of Lyme/MSIDS and what to look for.
He claims there’s over 30 years showing that long-term antibiotics don’t work and yet he neglects to mention that these studies have numerous inherent flaws including only accepting patients who test positive on 2-tiered testing with the EM rash. These criteria leave out a HUGE subset of patients, which means there is study bias. He often fails to mention they typically use mono-antibiotic therapy that is not effective for this. These studies NEVER consider pleomorphism (Bb’s ability to shapeshift) or polymicrobialism (coinfections). He also must never have read Dr. Waisbren’s (an IDSA founder) book on 51 cases of chronic Lyme & the benefit of long-term antibiotic treatment: https://madisonarealymesupportgroup.com/2017/07/09/idsa-founder-used-potent-iv-antibiotics-for-chronic-lyme/
Dr. Robert Edleman, pushes the bull’s-eye rash criteria but fails to mention that of the first ever patient group, only a quarter had the rash. Depending on who’s counting, it ranges from 25%-80%. Hardly a sure thing: https://madisonarealymesupportgroup.com/2019/02/21/lyme-disease-dont-wait-for-blood-tests-where-patients-have-bullseye-rash/ While it’s great when patients get it because the EM rash IS diagnostic of Lyme, many, many NEVER get the rash.
Edleman states to wait for the rash to get bigger before treating. WRONG! The EM rash is DIAGNOSTIC for Lyme. Start treatment yesterday! https://madisonarealymesupportgroup.com/2019/02/21/lyme-disease-dont-wait-for-blood-tests-where-patients-have-bullseye-rash/
Shapiro states there is NO diagnosis for chronic Lyme and that some vast research somewhere indicates they NEVER had Lyme.
Let’s unpack that statement. The reason there is no diagnosis for chronic Lyme is NOT because chronic Lyme doesn’t exist, but because according to Dr. Donta in the documentary “Under Our Skin”, the IDSA pushed the Lyme guidelines group to reach a quick conclusion and while they discussed the acute phase of Lyme, they NEVER got to the chronic phase and entrusted Dr. Gary Wormser to deal with the chronic phase on his own. He never did and patients have been suffering ever since.
‘Repeat a Lie Often Enough and It Becomes the Truth’
This interview was 8 years ago and Shapiro has learned NOTHING. NADDA.
Edleman states you need that FDA approved test (CDC 2-tiered testing that misses half or more of all cases) https://madisonarealymesupportgroup.com/2018/01/16/2-tier-lyme-testing-missed-85-7-of-patients-milford-hospital/and he states only 5% go onto develop chronic symptoms. WRONG! This number has been estimated to be 60%: https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/
Notice that when Mandy from “Under Our Skin,” spoke she mentioned that even with the EM rash, doctors told her Lyme couldn’t do that. She was dismissed for years. She also mentioned that she had all sorts of trouble with insurance paying her treatment. She felt she was treated appropriately through Dr. Jemsek. She is completely well now and was treated by a Lyme literature doctor with long-term antibiotics.