In Response to Questions & Comments
This is in regards to the Lyme Army's proposed plans to have a protest to fight our Lyme bill in Washington DC while also calling for a Congressional hearing (that we've already had), and the advise they got from the Mayday Project and former members of the federal TBDWG who were dismissed or quit before the group got started, or early on in the process.
QUOTE FROM FB PAGE- Mirenda Campirano says... "yes funding continues to go in the hands of horrific doctors like wormser and steere and they have produced noting in 40 years. So we want the funding and this bill to stop until we get the truth and a hearing to investigate Lyme disease. We want NO more money going into the hands of these monsters!"
RESPONSE To Mirenda- Stopping this bill's passage until you squeeze the "truth" out of them is kind of a fun thought, but not a reasonable concept or solution to our problems. You don't throw out a refrigerator if your oven burns the cupcakes. You fix the oven if you want better cupcakes.
PLEASE NOTE- This bill is specifically designed to address the exact same problems that you are complaining about. Reading the bill would really be the thing to do, especially before further misrepresenting it and trying to get people to kill it. So please do those who are suffering a favor and take time to read and understand it.
And you need to realize that as patients we can't stop the money flow if we wanted to, because, well, we don't have the money. Your complaint about government funding would need to be addressed to, and handled by, entirely different agencies that are strictly regulated by federal law. There are online resources so you can familiarize yourself with this process; please use them. And for all of our sakes, in the future please educate before you bloviate.
SOLUTION- The BEST we can do to try to lessen or stop some or all of the funds going from the government- HHS, CDC, NIH, etc- to the toads is to try to have a say in where the money needs to go from a scientific/medical standpoint in order to improve the Lyme situation and our health.
You are in luck! That is exactly what this bill is designed to do!
PLEASE NOTE- We do have some very intelligent and very experienced people working for us who have dedicated their lives to helping others. Why would anyone want to interfere in their efforts, when it is the actions of the toads people are angry about?
As for a hearing- we've already had a Congressional hearing. If interested you can watch the event online for free. Many of our Lyme treating doctors, sick patients and members of our non-profit organizations participated and some were there in person.
(BTW- Your so-called "advisors" who told you to fight this bill and call for a Congressional hearing during your protest should have known about this action. Hint- they have a long history of having an inappropriate agenda. Best beware! And always do your own research.)
PLEASE NOTE- If some people would stop trying to slam sick patients, advocates and groups dedicated to helping us they would have time to actually read the bill and do the required research needed so some people don't look so uninformed.
You need to at least read the bill before condeming it and trying to get others to do the same.
Windy Mauga No transparency....ever.
No interagency communication.
No Care, Concern... it's a case of just send your hard earned monies to fund gubberment tyranny.
Clearly, it's not just lyme, it's... It's debauchery through all levels of biomedical ethics.
Windy Mauga If it quacks like a duck... chances are it's a freakin' duck.
At hhs in dc you'll get escorted to pee in our hhs gubberment building (if you've ever had the luxury to attend a tax dollar funded tbdwg meeting) . Do they have a Fixation on bug bite diseases?
In Atlanta, they brought a security puppy dog out. He was in training around a level four bio-lab. It's comforting to know tax monies are spent on such a fine pedigree of pooch.
Yet sadly, the toilet tissue was rough and substandard.
Windy Mauga Don't partake of gala lyme bills. It's Old news. Jeb bush-wacker Screwed Floridians 2003...…fmr....fukmerunnin'
RESPONSE To Mindy- I'm not sure how to address your concerns about being escorted to pee in an HHS building or the fine pedigreed "security puppy dog" you mentioned, but I am quite sure these problems aren't addressed in this bill.
As for your mention of "no transparency" and "no interagency communication"- I can assure you that is covered throughly in the bill- to our favor. Please take time to read it. Here is the link- https://www.congress.gov/116/bills/hr220/BILLS-116hr220ih.xml?fbclid=IwAR0pZvn21Rl938Ftueeto8R-FpHbj3WRjGiw8B3nSZWxh2NY8chMJfdGqLg
Raven Strattis I wish I had funds enough to attend. I'd vote for a Congressional Hearing; I'd prefer a Congressional INVESTIGATION into 40 yrs of Corruption, LIES and DENIES. I agree No More Money!!!
RESPONSE To Raven- We've already had a Congressional hearing. Sorry no one told you.
First-Ever Congressional Hearing on Global Challenges of Lyme Disease
You can watch it and read the testimony that was submitted online if you'd like.
Sharon Wampler How about both - investigation and funding for research into prevention, diagnostics and treatment.
Sharon Wampler Mirenda Campirano I think you may be misinformed or misunderstanding this situation. I am a lyme patient and a scientist who has been working with CA Congressman Scott Peters since 2017 and in communication with leaders of various Lyme advocacy organizations since 2013. The HHS Lyme and TBD working group is comprised of advocate leaders, scientists and doctors who have been working on behalf of patients (not the “old guard.” I am confused as to your goals of protesting federal funding which many people have worked many years to achieve? What am I missing here?
Sharon Wampler Much of the funding for Lyme and TBD research is currently raised from private donations. The lack of state and federal funding for this major public health issue is a travesty. Help me understand your goals.
RESPONSE To Sharon- You are absolutely right! Thank you for your advocacy work! And the good news is, the bill covers all of our concerns. It's the best one yet!
An oversight office (I've dubbed it Tattle Tales R-us) is required to review the past activities (funding, research, etc.) and report to Congress in detail on the situation (ouch on the CDC!) and continue that policy throughout.
Also there are in depth instructions for properly dealing with future prevention, diagnostics and treatment problems, including CHRONIC Lyme & TBD's, and alternative related (natural pesticides, etc.) actions that will be taken. So much is covered in there I can't list it all here!
I also want to say I read your article about your father, and I am so sorry! I responded the other night on your post and said so and to also thank you for your advocacy efforts, but the Lyme Army deleted all of my posts and blocked me from further posting. Bless your heart.
Amy Jo Wiester This statement is confusing can you clarify. I thought Smith waS AN ADVOCATE.
Mirenda Campirano Amy Jo Wiester Smith May think he is trying to help us, but if the bill is passed it will still put funds into the the same drs and governmental agencies who had done nothing for us but lie and deny us all for over 40 years.
RESPONSE To Amy Jo- You are absolutely right. Congressman Smith is our long time friend and best advocate. He deserves a lot of credit for helping us thus far. He's held hearings, sponsored forums and programs with our best docs and advocates, is the Chair of the Congressional Lyme Disease Caucus, and has submitted a federal Lyme bill every session for as long as I can remember. He also fights behind the scenes for all of us too. He works closely with the Lyme Disease Association and together they are the best!
The Lyme Army ... bills like this ask for funding to go to several organizations like HHS, CDC etc. these organizations pass the funding down to the same drs who deny and mock our illness like Dr Gary Wormser IDSA and Dr Allen Steere. They have done nothing to help the lyme community in 40 years. This must stop! Not everyone on the tick borne working group has the lyme community’s best interest at heart. Some care more about hiding past medical fraud and the truth about what has happened to us all. I hope that makes sense. It all boils down to money, greed, and power. The lyme community doesn’t have an accurate test, no correct case definition and we aren’t getting any “real” help. This is very complicated and sounds crazy at times, but it’s what is happening to us all.
RESPONSE To The Lyme Army- Sorry! This bill absolutely does not, in any way, "ask for funding to go to several organizations like HHS, CDC, etc." as you reported.
You are right that everyone on the "tick borne working group" doesn't have our best interests at heart. If everyone in the Lyme community did, we wouldn't be where we are now. BUT- for decades we had NO say at all, NO seats at the table, and NO ability to change policy. We've fought tooth and nail to make it this far and we have! Our representatives on the TBDWG and others are busting butt trying to make progress for all of us, as Sharon pointed out. Their next step is trying to get this bill passed.
I applaude the idea that you want to protest- I loved all of the ones I've helped organize and went to over the years- BUT, protests need to be designed with a serious goal in mind and not held just to try to destroy the efforts of so many others who have a long track record of moving us forward through these horrendous odds.
Truth is, you need to do your own research in depth to know what you are talking about and start looking at the big picture. Some of these behind the scenes people have a history of trying to destroy others efforts and if they can't destroy them they jump in at the last minute and try to claim credit for others hard work.
Please, to be fair to all of the sick patients depending on others for help and those to come in the future, read the bill until you totally understand it. That's the least you can do before you try to kill it.
The Lyme Army Lucy Barnes please explain how Chris Smiths Bill stops the corruption?
RESPONSE To The Lyme Army- I certainly would if you hadn't deleted all of my posts that already explained it in detail, and then blocked me from posting anything else. If you have sincere concerns please first read the bill, allow me access to be able to answer, and then ask your question. I am always willing to provide whatever information I can to help anyone and everyone.
Jaydra Ott Lucy Barnes R u frickin kiddin me? Ur supporting the same crooks? U do know that right?? RIGHT?
RESPONSE To Jaydra Ott- Actually, you are totally wrong. Totally. I have been fighting these toads for decades- in public and behind the scenes and at great expense to my health. Examples... (I am in the process of transferring my information to new sites because Google is closing the ones in the older system, so I am not able to produce more examples right now. This should give you a good idea though...)
https://sites.google.com/site/lymelegislation/dr-jaller/auwaerter--letter
https://sites.google.com/site/edwardmcsweegan/
https://sites.google.com/site/idsaonlyme/home
And may I suggest to please read the bill!
Colleen Schake But where are the details on this bill?
The government has not posted an update of the text yet so we have no clue what is actually it.
I have no idea Colleen. Just happened to see this link...never heard of this bill and dont know anything about it. Doubt I will be going to this Rally...cause nothing is making sense.
I mean..if I was to go to this rally i would have no idea what i was fighting. Are we going to have some kind of education class on what this bill entails and why we are protesting it?? Tell ya the Truth..I'm totally clueless.
Thought we were fighting the Lymecryme and trying to get Lyme Crooks prosecuted. Are we rallying outside on the streets for a proper validated case definition to be restored and get rid of the Bogus Fraudulent Dearborn Diagnostic Standard? Perhaps more like a Riot ..and let them know we are threw putting up with their Crymes of Inhumanity against us?? We are sick and tired of the endless pain and suffering and seeing our friends and family dying from this Cryme Disease. Or Are we rallying the halls of Congress to protest this Lyme disease Bill that I Know nothing about?? Nothing is making sense to me. I'm not going down there without a agenda or understanding of what we are fighting for.
RESPONSE To Colleen and Tracey- Sorry my responses detailing the info you are seeking were deleted by the Lyme Army. It is because of requests like yours that I have taken the last few days to do this research and write all of this up. If you have more questions please feel free to ask. (Keep in mind I am blocked from posting at the Lyme Army site.)
Mirenda Campirano ... Chis Smiths HR 220 bill if passed will do nothing for the lyme community. The same drs and organizations will continue to receive funding to help keep their lies going.ie Gray Wormser, Allen Steere, CDC, HHS etc. They have produced nothing for the lyme community in 40 years. We want to stop the criminals from getting any more money, and want a congressional hearing to investigate Lyme disease. This is why we are marching the halls. If we rally outside HHS it could help push this bill forward and we don’t want that. If you have any questions please reach out. We will be happy to help you understand.
RESPONSE To Miranda- (Chris, not Cris: Lyme has a capital "L"; it is Gary, not Gray Wormser.) Ok, that said...
Your first line is totally, totally, totally wrong. Please READ the bill. Also, we've HAD a Congressional hearing. Please do your research. If you plan to push others to do things and answer their questions, please at least know something about the topic and present the facts.
New, Last Minute Post By Miranda- The Lyme Army. She is talking- falsely- about me and the facts, which is why I am responding.
RESPONSE To Miranda- The Lyme Army
1. I don't have a "personal interest" in the bill. In fact, I'd be thrilled if there weren't any bills to have to deal with any more. Never, never, never! I am so sick of bills it isn't funny. BUT, there are bills on the table and people are asking sincere questions and unfortunately, they are being provided a bunch of wrong answers and information that could hurt them and all of us.
Since I have the answers and to keep the facts up front and center, I feel obligated to respond.
And certainly you can protest a bill that "keeps giving the same Lyme deniers funding" as you stated, or any bill for that matter, but this bill doesn't do that and from what I can remember, none of the other Lyme related federal bills that have passed have done it either. (Actually, just seeing if you are paying attention or if you even know. That is like a trick question- none of our federal bills addressing this same topic have passed and most didn't request funding.)
2. I don't have a "blog". I have a Lyme Legislation website and about 12 other sites with Lyme related information. And you know personally that I posted answers and links to where to get the facts for those with questions ON YOUR FB SITE, and within hours the Lyme Army (you?) not only deleted all of them, I was blocked from responding further. So much for a discussion or transparency, or getting the facts out there.
For those who want more information, you can also go to the Lyme Disease Association's website and see details on all of the state and federal bills we've been working on over the years.
Federal Bills- https://lymediseaseassociation.org/category/federal-legislation/?fbclid=IwAR0VXCrAgEicJW-4d9rFXxPF-4iy7ytCxHg3_9V4rNAKkG2fPpTwOn4JFGk
3. You are misrepresenting what I stated. Why do that? Read what I actually said (response #1 located here.) https://sites.google.com/site/lymelegislation/2019-federal-bill/why-not-to-protest-the-federal-bill
4. And for Pete's sake- READ the bill. The bill addresses the exact issues you are complaining about and attempts to fix the problems! It is located here.... https://www.congress.gov/116/bills/hr220/BILLS-116hr220ih.xml?fbclid=IwAR0pZvn21Rl938Ftueeto8R-FpHbj3WRjGiw8B3nSZWxh2NY8chMJfdGqLg
5. Learn more so you don't keep telling people something that isn't true. Example- we do have an official definition for Lyme disease. Additionally, the bill addresses this topic in detail as related to clinical applications, research, surveillance, etc. The Lyme definition was written a couple of years back and published by Dr. Stricker, et. al. Here is a link to the basic info. The actual document is about 45 pages long and very detailed. https://thescipub.com/abstract/10.3844/ajidsp.2018.1.44
6. You don't have the power OR the platform to stop all federal funding regarding Lyme disease, especially through a legislative bill or by protesting one. Even Congressmen can't do that. So the only thing you would do by telling legislators that stopping funding is your goal, is to make yourself look "crazy" (??), especially when approaching Congressional aids who know better. Please don't embarrass yourself or encourage others to do so.
7. If you have something to say, say it. Don't beat around the bush and try to mislead people. I've made NOTHING for the three plus decades I've volunteered in the Lyme community. I hold no Lyme related patents, do not sell Lyme books or products, do not get a salary, do not sell supplements or anything else you eluded to. Neither do the other volunteers on OUR side (vs. IDSA/CDC) that I know who have an interest in this bill.
8. My motivation for my volunteer work is nearly identical to your own.
The difference is you are set on destroying others efforts and work (you can't possibly do it, but you are trying) and you don't have the experience or knowledge to do what is in the patient's best interest. As the saying goes and is especially true with legislation, "if you can't hunt with the big dogs, get off the porch". Don't use your energy to fight others efforts because you don't know what else to do or you have another agenda. Focus Daniel-son, focus.
9. My bet is the bill in all its wonder and wisdom won't pass in its original form, with or without your support or mine. I am simply trying to prevent innocent patients, who are sick, angry and want change desperately like I do, from making fools of themselves by following the lead of others who in the past decided to go "Marching the Halls of Congress". Members of Congress and their staff are already prepared and expecting some of the long time nay-sayers and their new recruits to do that. They don't pay them any mind.
10. Have you checked to see if Congress is even in session on the date you'll be going? Did you get a permit for the protest and candle light event, and do you have professional emergency medical people on stand-by at the scene?
I ask because I noticed the event is scheduled on a Friday in Washington DC- during baseball season- Chicago vs. Nationals that day. Plus, people working for the government who can leave early do, IF they come into work at all on a Friday, and traffic on a Friday is generally a nightmare.
NOTE- I am always pleased to see and support the efforts of patient volunteers trying to help our community. What I won't tolerate though is the continuous speading of nasty lies and hate that goes on by some who then attempt to mislead others and falsely claim they have the patients best interests at heart.
Lucy Barnes