August 11, 2018
EMAIL TO:
edward.stannard@hearstmediact.com
helen.bennett@hearstmediact.com
viktoria.sundqvist@hearstmediact.com
Mr. Edward Stannard and New Haven Register Editors,
When I see articles like yours Mr. Stannard, I literally get sick to my stomach. I then cry for those who may take your information to heart and later be devastated by it as a result.
https://www.nhregister.com/news/article/Confusion-myths-live-on-about-Lyme-disease-13149219.php
Do you not know anyone suffering with chronic Lyme disease in New Haven, CT or in your State? There are hundreds, if not thousands just in your area, so it is hard to figure out why you’d print something like your latest Lyme related article that is so totally out of touch with reality.
I don’t know if you didn’t do your research before writing the article, or you made some sort of deal with someone to produce this kind of inaccurate information, or you are simply a friend of Shapiro's and/or his buddies and are trying to boost their flailing credibility? Either way, your article is totally inaccurate and not at all acceptable.
I’ve worked nearly every single day as a volunteer through decades of pain and unimaginable symptoms (33 years) to try to educate the masses and prevent others from becoming like me- chronically ill and totally disabled from Lyme and tick borne diseases- and to keep them from dying and/or committing suicide, which far too many do. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5481283/
Shapiro is one of a handful of people who continues to spread misinformation about this disease to try to keep the status quo, least he and the others admit they were wrong and are sued by countless people worldwide for all the harm they’ve caused.
I actually sat behind Shapiro when he has testified in CT against a doctor- his competition- who has had great success treating tens of thousands of children with chronic Lyme disease, and along with many others in the court room heard him lie multiple times under oath. There is something terribly wrong when the New Haven Register supports someone like this, someone who has actually been dubbed… Eugene- Pinocchio Nose- Shapiro.
In fact, he is the subject of a current Lyme related federal lawsuit (RICO) filed by Lyme disease patients (or their family members if their loved one has since died)- yet you fail to mention that and portray him as an “expert” and leave his one sided, self serving rendition of totally disproven science unaddressed. There are no nice words for this kind of journalism, or lack thereof.
Current lawsuit against Shapiro and his IDSA Lyme disease guideline coauthors...
https://www.courthousenews.com/wp-content/uploads/2017/11/LymeDisease.pdf
There is a long history of Shapiro and his coauthors putting up endless road blocks to prevent people from being treated for a disease Shapiro won’t even admit exists. It does exist- and here is the definition of CHRONIC Lyme Disease…
https://sites.google.com/site/marylandlyme/chronic-lyme-disease/definition-of-chronic-lyme-disease
Here is recent information published by your own New Haven Register, countering what you’ve just written. Did you not bother to read your own paper?
Quotes- "Lyme disease isn’t easily diagnosed. If a person isn’t producing antibodies just as blood is drawn and analyzed, the test result is often negative. Only about one in 10 cases can be confirmed using diagnostic tests, leaving the rest to guesswork by doctors, according to a 2012 analysis of the failed Lyme vaccine trials of the 1990s by Robert A. Aronowitz in the Milbank Quarterly.
The difficulty in diagnosing Lyme has left possibly thousands of Connecticut patients suffering myriad painful symptoms, including flu-like aches, arthritis, Bell’s palsy and headaches.
But the signs and symptoms of Lyme disease are often nonspecific, appear in stages and can be linked to other conditions, making it difficult to diagnose…"
Why is it some reporters at the New Haven Register (such as Christine Woodside) get it right and you have done such an abysmal job? This doesn’t make sense. https://www.nhregister.com/news/article/As-spreads-Lyme-disease-Connecticut-lab-focuses-12707539.php
And Amanda Cuda in her Lyme related article? She got it right and you totally dropped the ball here? That’s NO good when people’s lives are at stake.
https://www.nhregister.com/connecticut/article/Study-Lyme-disease-treatments-surging-11729349.php
I'd Like To Introduce You To...
Eugene- Pinocchio Nose- Shapiro
QUOTE- “People complaining of chronic Lyme are very common,” said Shapiro. “Actual late (stage) Lyme disease is so rare that general practitioners are lucky to see one patient. ~ Every patient that’s been seen with chronic Lyme disease in my practice never had it.” Source
QUOTE- "Lyme disease is NOT hard to diagnose." Source
QUOTE- "There is no diagnosis for chronic Lyme disease." Source
QUOTE- “Dr. Jones by the way once diagnosed a teenage(r) who attacked a cat with an ax, diagnosed this as chronic Lyme disease over the telephone. I kid you not. I was involved with the court case.” Source
QUOTE- “I used to have late neurological Lyme on this slide, but I took it off because I've never seen a child with late neurological Lyme.” Source
QUOTE- “So, if you have a clinical situation, where a patient has vague symptoms, not likely to be Lyme disease. Antibody for Bb is negative, not likely to be Lyme disease. Antibody for Bb positive, diagnosis: Not Lyme disease.” Source
QUOTE- ""California. This is ridiculous. This is the desert here. But if some nut reports a case of Lyme disease, it gets included." Source
QUOTE- On parents who insist that their children have Lyme disease: "… some of this is Munchausen's by Proxy." Source
QUOTE- "ALL of the studies have shown that the antibiotics are of no benefit." Source
QUOTE- “Some of these Lyme disease support groups really put a lot of pressure on us. And the NIH is really under pressure by lawmakers to do something to study this problem. … Most of these patients had already been treated for an average of something ridiculous, like 4 months.” Source
QUOTE- “So clearly, these patients were sick. They had problems. It's just that antibiotic deficiency was not one of them. [laughter].” Source
How Wrong Can They Be?
A partial list of the claims made by Shapiro and his cohorts that have since been proven wrong (with documentation).
https://sites.google.com/site/marylandlyme/idsa-panel-review/how-wrong-can-they-be
We won’t get into Shapiro's relationship with patents, vaccine & testing profits, insurance & drug company ties, etc. right now. However, if you need more information about those topics please advise. Those conflicted and continuing connections have already been exposed by the Attorney General (2008) and are well-known. After a lengthy investigation, (previously AG- now Senator) Richard Blumenthal stated…
"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion. In today's healthcare system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions.” Source- https://web.archive.org/web/20170319133146/http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284
For the life of me I can’t understand why anyone would print this kind of false information. Maybe if I knew why I could do something constructive about it. Not knowing leaves me guessing about your motives and accusing you of whatever I can come up with to try to explain it, and that isn’t acceptable either.
If you can’t fix it or help people learn better after writing that inaccurate information, can you at least explain why you wrote it? What is it that you aren’t seeing that the rest of the world’s patients with Lyme disease do see?
Sincerely,
Lucy Barnes
August 11, 2018