This response below is addressing some of the comments made in a lengthy Facebook post by Lynn Shepler. https://www.facebook.com/lynn.shepler?fref=search&__tn__=%2Cd%2CP-R&eid=ARDbVtFc0RP4GE8mhNBmVT9n75EAIvjz8Lhw1eZPspDK1BlcD0xGY93qkeTJSYak3m3rS7ZNzDtVR2i-
January 1, 2020
I also can't stand Eugene Shapiro. I can agree with much of the negative things said here about him (other than the comment to shoot him).
BUT, I TOTALLY DISAGREE with the personal slams and false information shared about people and groups in OUR community and I will not let this stand. Addressed below in BOLD are my comments and the facts.
Profiles on Lymedisease.org of Dr. Shapiro and why we should oppose him are grossly out of date.
WRONG! Here are some of Lyme Disease. org’s reasons why Shapiro should be removed from the TBDWG. They are not “grossly out of date” as you stated. They show a long history of bad behavior and serious problems, and it must be a long history or multiple examples to not be written off by officials as a one-time offense.
https://www.lymedisease.org/shapiro-tbdwg/
Here are more reasons from LymeDisease.org…
In politics this is called "opposition research.” We have NO PATIENT GROUP that routinely does opposition research to let us know the horrors we are facing.
We also have no specific group focusing only on politics. Nor do we have funds to pay professionals in this field to do this kind of work. If you are so horrified, why haven’t you been doing it?
I've made attempts to do some research over the years in order to help me and others refute the bad boys claims and actions, and to support the complaints I personally filed against them over the last several decades. Here is a sampling of some the complaints- most are about 18 pages long and fully documented.
https://sites.google.com/view/lucy-barnes-history/complaints-filed/georgetown-weinstein?authuser=0
And although I haven’t finished transferring all of the names and information from the old Google site to the new one yet (no choice- they changed systems), here is a site specifically designed to make available to those who need it the info on each of the bad boys, complete with quotes and sources.
https://sites.google.com/view/lyme-monsters/home?authuser=0
Turns out, Shapiro is "MR. VACCINE." That's way more than you'll find on the Lymedisease.org website or their statement in opposition to Shapiro & that profiles Dr. Shapiro. Lorraine & Phyllis, please take down the horse & buggy profile of Dr. Shapiro, do some research and tell people, thought your powerful channels, who he really is and why he is to be feared.
WRONG! In your fury to kick an outstanding group and the dedicated “ladies” who have sacrificed immensely for you, and so many others, you missed the info that is right in front of you. I’ve already shown you lists concerning Shapiro that they developed, and they have vaccines conflicts of interest listed. Check this one for example…
https://www.lymedisease.org/shapiro-tbdwg/
Please educate people about "technology transfer offices" and how these can interfere with our interests.
Hey! Why don’t YOU do what you want done and stop dumping more on the backs of others who are working night and day to help all of us?
Turns out, another guy, Joseph Craft MD, a rheumatologist who is co-founder of L2 Diagnostics, Inc., a biotech spin-off of Yale that has centered its research on Lyme disease work is co-director with Shapiro of Yale's new PhD program for "Investigative Medicine.”... I am disappointed that no one in the Lyme community has kept track of what this guy is up to.
AGAIN, if you think this is important and should be done- then YOU do it. They can’t possibly do everything that needs to be done. And you have no right to tell others what they should be doing within their organizations, especially since you aren't helping them.
I get disgusted that I don't think there's anyone here who understands why IDSA, CDC, PHARMA can't acknowledge chronic infection----it's not merely that they WON'T (and you're going to sweet talk them, ladies), it's that they **CAN'T**===without sinking their vaccine plans.
Here is a huge problem. A proper approach is vital to getting things done. Those who demand, scream, yell, curse, act crazy, lie, sneak behind others backs, misrepresent themselves to the outside world, etc., etc. have never been able to prevail and have only served to damage our credibly and ability to get things done.
In fact, these people who, for example, have approached legislators with this nasty and/or fake sickening sweet approach were pegged years ago and are referred to, by the politicians themselves and office workers, as fringe groups (and other descriptions which I can’t use here). They are granted an audience sometimes, but once they leave the building, their info goes directly into the trash can.
What we should be doing is supporting and praising those who have the “stomach” to meet with the bad guys and who are trying to make positive changes. I can’t do it, I am not strong enough- therefore I am thankful to those who can represent us all as sincerely sick and in-need patients.
I know there are schmucks here who continue to be deluded that we can have vaccines AND have the "dark side" finally acknowledge all the people so sick with chronic infection. NO, you are dead wrong, and you are hurting our ability to move forward. I am so done with you!! YOU ARE DEAD WEIGHT JUST LIKE THE SCHMUCKS WHO VOTED FOR TRUMP!
Schmucks? Dead weight? Not impressive or cool to be calling those with differing opinions or approaches nasty names. You can have a different opinion, but in no way does that mean you are right and others are wrong, and vise versa. These kind of ugly attacks only serve to make YOU look ignorant. And more important, in no way does it improve our situation.
Time to step up our game. In forty years, mere "Lyme awareness" has gone nowhere. Who of us can go to any hospital for care? Who of us have a hope for a cure to have a life? How many of us are developing new pathology consistent with chronicity that has never been studied??
Without the hard, and I mean HARD, work of all of the sick volunteers who have done what they could, most people here (if not all) would never have heard the word “Lyme” disease.
Are we done? Absolutely not. But, instead of slamming other people and their contributions- how about YOU get on the train and make the changes YOU think are needed instead of sitting back criticizing others.
On this topic you could make a difference. After all, you have more experience than the rest of us since you were, as you state on your FB page, a resident physician at Yale where Shapiro and several other bad boys come from.
Lynn T Shepler With regards to Shapiro, it is not enough to just say he is terrible. It must be said WHY HE IS TERRIBLE. FACTS. I was so pissed when I read all that he has done and none of the information was in circulation in the Lyme community, and the significance likely would not even be understood!!!!!
The Lyme community is a vast morass of sick people who are kept ignorant and passive by our "leaders," who are only just a few steps ahead of them spouting that their mission is "Lyme Awareness," nothing more than that. I could not believe what I was reading. Our leaders are asleep at the wheel and we are sitting in the back seat while they "drive."
First of all, if you think this needs to be done, why aren't you doing it? Easier to blame others, eh?
Second, the law requires non-profits to have a specific "mission". They also limit the amount of time/$ the group can spend on certain things. The LDA and LDO have never had it in their mission to try to crush professionals who disagree with them, even though they may deserve it.
Both groups have excelled in their missions and should be thanked, not slapped. To expect them to do everything you want done is also not reasonable. The general rule here is if you want it done YOU should do it. Don't expect anyone to do all you think they should do.
Lynn T Shepler We need to research the sh*t on what he's involved with and start to make direct contact with Deans at Yale and the Connecticut Medical Board. Yes, it's scary. It's scary to pick up the phone and get these people who are intimidating to us on the phoneand begin to call them, and call them again. To get in their faces. To create negative press for them. To raise questions about their ethics. To characterize them as the greedy bastards they are. To make our accusations in a public way.
We've never done that. All the "ladies" who are "leaders" want eait to be so civilized. Tea and cookies. Well it can't be. Get real, or go home. Lyme warriors? Lyme wimps. Yes, it's like jumping off a cliff, but it is time to make it so THEY CAN'T IGNORE US BECAUSE WE ARE CALLING UP THEIR BOSSES.
WE ARE SENDING LETTER TO OFFICIALS IN THE YALE HIERARCHY. WE ARE CALLING UP PEOPLE AT THE CONNECTICUT MEDICAL BOARD AND FILING COMPLAINTS---EVEN IF THEY DO NOT ACHIEVE ALL THAT WE WANT. WE MUST NAME NAMES. WE MUST GO ON THE OFFENSIVE, INTEAD OF ALWAYS BEING ON THE DEFENSIVE. I AM SO WEARY OF ALL THE CHICKENS HERE. Buck-buck-buck-BUCK!!!
WRONG again! Multiple times this situation has been addressed and many actions have been initiated by a number of people to try to stop the bad boys. Example- I got a letter back from Yale about Shapiro (years ago) and they basically said they support him and what he is doing. They showed absolutely NO interest in addressing the problems he is causing.
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Now, I hope you are happy. You've wasted your time making and responding to your nasty post, and you've taken up my time attempting to respond so the facts can be presented. Had you not written this garbage, we could have both focused on the REAL bad boys and maybe even possibly done something to move us forward.
And yes! You should talk about Shapiro and show what he is doing that is hurting us, but you should not attack people in our community while doing so.
Lucy Barnes
Last Updated- January 2020
Lucy Barnes
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