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Link Here- https://www.facebook.com/groups/205504456180483/
Susan Green (NatCap Lyme Legislative Counsel- attorney), Janet Jensen (NatCap Lyme Secretary), Belinda Hobson (patient), Barbara Reed White (patient).
Attempting to deny their lies, trash talking, and discrediting of Lyme patients, advocates and organizations, etc.
My parents raised me well, leaving me with many life lessons, all of which have served me well. In recent weeks, my colleagues and I have been the victims of defamatory, libelous statements regarding our service to the Lyme community. These attacks are unfounded, false and made with reckless disregard to the truth. I am reminded of one of the many lessons my parents taught me... never mud wrestle with a pig. You get muddy and the pig enjoys it. It is for that reason that I choose not to name this individual here but rather have referred her information to others for further handling. I would however, like to dispel the misinformation that has been circulated about me.
1) For years, I have gone on the record raising concerns about the safeguards for insuring fair representation of the Lyme Community as designated in the Gibson and Blumenthal Working Group Bills.
2) In a conference call with Senator Blumenthal and Advocacy leaders from around the country, I expressed my concerns regarding potential conflicts of interest and stated that I was willing to execute a financial disclosure form. I called upon the other advocates on the call to agree to do the same. I came under attack from many of those individuals. Monte Skall joined me in that request and agreed to make full disclosure.
3) The Board of Partners Against Lyme and Tick Associated Diseases (PALtad.org), authored a white paper expressing our concerns that there were insufficient safeguards to insure a balanced composition of the working group. At that time, the agencies had no voting rights. Despite our concerns, many advocacy leaders pushed for the Working Group. At the 11th hour, our fears came to fruition when the Working Group was swept into the 21st Century Cures Act and the agencies were given full voting rights. Once the bill was passed despite our words of caution, we made a conscious election to continue to serve our community in whatever capacity we could.
4) NatCapLyme’s General Counsel Gregg P. Skall, was a presenter at the opening of the HHS TBDWG. His presentation was powerful and comprehensive of the issues. I personally testified on the access to care issue. Both of our presentations can be found on YouTube.
https://www.womblebonddickinson.com/…/gregg-skall-advocates…
https://m.youtube.com/watch?v=-YvMgMQWerw
5) Neither Monte Skall nor I have ever received compensation for the work that we have done for NatCapLyme, ILADS, patient support or speaking engagements. We have been committed to giving back to and educating the community whenever needed.
6) I was asked to serve on the Access to Care subcommittee. At the time that I was selected, I was defending one or more physicians, spearheading legislation pertaining to access to care and was asked to sign an ethics contract that I felt had the potential to create information that could potentially violate the duty that I owed the Drs. or the committee. After consult with counsel, my malpractice carrier and others, it was determined that I was conflicted out for the integrity of all. On February 14, 2018, I sent the letter below, declining the appointment but offering to testify before the committee. I will be testifying before months end.
To those of you who have no interest in this subject matter, I apologize for the lengthy intrusion. For those of you who follow the uninformed ranting of one instigator, I share the following advice...Take caustic posts attacking others within our community with a substantial dose of skepticism, don’t believe everything you read and support those who are hard at work fighting for the interests of the community. Our records speak for themselves. As always, I consider it a privilege and honor to serve.
Comments
Susan Thomas Very sorry you cannot officially participate, thank you for being careful, though. And for testifying. And for everything else you've been doing for us!
Barbara Reed White Susan most of us know your heart and watch you and Monte fight for those of us that are no longer able.
Several things I will never forget when I was so lost and confused with nowhere to turn. Monte Skall spent HOURS on the phone listening to me pour m...See More
Rory Hubert Kahn You are an inspiration to so many people, and you always take the high road. Thank you for all you do for the Lyme community, with grace and dignity!
Belinda Hobson Susan you know how much I love you.You have worked so hard to make a change .Thank you so much
Susan Green Thanks to each and every one of you. I so appreciate your shared sentiments but please know that I am very aware of the support that I have from most of the community and I love you guys. This post was made not to garner kudos but rather to dispel the ...See More
Karen Vanderhoof-Forschner Sue you and NatCap are amazing! Sorry people are so jealous they are attacking you!
Lisa Bedell Colbert Susan, you are definitely one of my Lyme heroes and you have always done everything in your power to support the Lyme community! Thank you for all of the love and support you have given, and continue to give!
Susan Green To all of those who have come to our defense, thank you! In law, there is a often used quote, “res ipsa loquitur”. It means “the thing speaks for itself”
Please note that this post was intended solely to correct misinformation and set the record strai...See More
Susan, I am sorry this page got out of control. I've been out on personal emergency.
To All Concerned: I have watched both NatCapLyme and Susan Green since 2010. I have nothing but the highest respect for their professionalism and tireless work on behalf of Lyme patients.
Janet Jensen Janet and 1 other manage the membership, moderators, settings, and posts for Maryland Lyme Disease Support Group.
Susan Green Many thanks for all your hard work on behalf of Lyme patients and especially for helping us here in Maryland.
Lucy Barnes Here you (Janet Jensen) and Susan Green while under oath are trying to convince legislators you don't know me "never heard of me" and never heard of the large Harford County group that has been active there for two decades. It's on film too. I have n...See More
HB 880 & SB 793 - Lyme Legislation
SITES.GOOGLE.COM
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Susan Green I did not want to identify you when I started this thread but you seem to need to be acknowledged.
Lucy Barnes , Theresa Beck, Tin Cup or whomever you are, I do not know you. I have never met you. You have written opposition testimony for every bill t...See More
Gabrielle Sanchez Susan Green Well said, Susan. It is sad and baffling to see a "Lyme advocate" lobby against bills that would help Lyme patients in Maryland. Thank you for all your hard work to help all the people in Maryland and the US who are suffering from Lyme and tick-borne diseases.
Lucy Barnes Susan Green - Your post is so inaccurate in every way it reminds me of the articles Phil Baker writes when he is trashing us along with all things Lyme. Don't know where to start or what to address first? Maybe this quote from your post... "You have ...See More
Lucy Barnes HB2- This was a bill to make Lyme disease reporting mandatory-- - when it has already been mandatory for years! And not only in Maryland did you all do that, but you had one in Virginia too. ??? That makes all of us look pretty stupid when someone su...See More
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Lucy Barnes How about HB 290- a doctor protection bill our doctors didn't even want? QUOTE- "For many reasons HB 290 was not supported by the majority of Maryland patients, the Lyme Disease Education and Support Groups of Maryland (LDESGM), the International Lym...See More
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Lucy Barnes How about HB 798- to create a Maryland Task Force when we JUST HAD ONE! The LDA wrote an opposition letter to it, basically because it was stupid, and over 30 groups nationwide signed on to that letter. But I am singled out and blamed? You all 1st n...See More
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Lucy Barnes And I'd forgotten about the one you mentioned in your post above. Again, we don't need a bill to say the grass is green when it already is. HB 1168- a bill to declare May is Lyme Disease Awareness Month. IT HAD ALREADY BEEN DECLARED OFFICIALLY BY GO...See More
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Lucy Barnes Had you asked me and not hidden what you all were doing each time, I'd have gladly told you none of those bills were going to pass. But, for some reason you just keep going around me, Maryland patients, Maryland advocates and our support groups. And ...See More
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Susan Green Lucy Barnes , I have personal knowledge that you were invited each and every time to be a part of and Co-create legislation that you could support but you declined the invitations and submitted testimony to impede any progress that was being made. Fort...See More
Susan Green Lucy Barnes , I had nothing to do with HB 2. Your usual misreporting. I was in no way involved
Lucy Barnes How about this statement you made... "You have claimed to be a Maryland resident but gave an address that was an empty street, not associated with you." Sooooo... You've taken up stalking sick patients and advocates? Is that part of your job with Nat...See More
Susan Green My personal favorite HB 290, a physician protection bill brought by a very strong supporter of the Lyme community, Delegate Jocelyn Pena-Melnyk.
Monte and I saw that the proposed original draft of the bill was going to be detrimental to the community....See More
Susan Green Lucy Barnes , our lobbyist google mapped the address you gave. That’s called investigation and preparation NOT stalking. Your true name is right out of your high school
Year Book!
Lucy Barnes Susan Green - Sorry! Whoever you are getting your "personal knowledge" from is lying. Plain and simple. THAT'S MY POINT! The LIES need to stop! As for you not being involved in ALL of the bills I mentioned (just the May Awareness bill) it still go...See More
Susan Green Does it make you feel better to keep attacking me? I have broad shoulders. I can take it but quit lying!!!
Lucy Barnes Susan Green - This is so pitiful. You've either been lied to big time all along, or you are just making this stuff up. With the wolf pack now attacking me I again can't keep up with all the posts. I do know NONE of you have had time to read the information and documentation I provided to even check the facts.
Lucy Barnes So, it appears you ALL don't want to do what I originally asked, which is STOP the lies, stop the sneaking around, stop trashing patients, stop trashing advocates and leave the other groups alone. Just bloviating as you all are doing and attacking the...See More
Belinda Hobson Lucy Barnes your making no sense what so ever.Susan has repeatedly ask you to meet and you avoid it at all cost.Why are you so involved in the Maryland community ? People like you is what makes us look as if we're crazy!!!Just stop
Lucy Barnes Susan Green You said.. "our lobbyist google mapped the address you gave. That’s called investigation and preparation NOT stalking. Your true name is right out of your high school Year Book!" WOW! Does your "lobbyist" stalk all of the people who respo...See More
Lucy Barnes Belinda Hobson You asked why was I so involved in the Maryland Community? Not that you'll bother actually reading it, but I'll share a couple of reasons below. https://sites.google.com/site/marylandlyme/memorial-page
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Lucy Barnes And another reason Belinda Hobson- https://sites.google.com/.../md-support.../after-the-bite
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Lucy Barnes And not that it is any of your business at all Belinda Hobson, but have you ever heard of a "snow bird"? Or duel residences? Or of having to go out of state for treatment? Good night.
Belinda Hobson Lucy Barnes you don't have a clue what your doing here. Please dont bring up the dead I don't think it helps any of us mentally at all.Your not the only one fighting for your life.We need to stay positive. And yes I know people that have been out of the country.You are opening up bad thoughts to so many.i would never stoop to your level.Good night
Belinda Hobson Lucy Barnes all so you mentioned duel residence. How in this world could you post a gofund me and take peoples money ? When most the Lyme community can't afford treatment or keeping one home.Shame on you
Lucy Barnes Belinda Hobson - That's some of my family and friends. And you directly asked me about it and got the answer. Now let's have SOME respect. If you don't want the answers stop asking the questions.
Belinda Hobson Lucy Barnes there's no way in this world I went to be in your underwear drawer.Your the one that responded dual residents
Lucy Barnes Barbara Reed White - If you knew anything, or bothered to ask first or research instead of making up your own answers, you'd know that you aren't suppose to use your real name when posting on LymeNet. More to read if you want to know the truth. http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/92623
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Susan Green Lucy Barnes , the only person that came on this thread “trash talking” is YOU! I never even mentioned your name
Barbara Reed White Lucy Barnes trust me nutjob its clear you have something seriously wrong with your mind but again im not going to remain quiet
You obviously have no one on your side to back your ridiculous claims against Susan and Monte
Susan Green All this was meant to be was a correction of your post as to why I left the working group! Your revealing yourself here and attacking me is the behavior that I have endured for years. I return to my original advice from my parents and will no longer engage in defending your spurious allegations. They are best moved to a more appropriate forum.
Susan Green Lucy Barnes you were invited to participate in each bill that I was involved in. I was present when Senators and Delegates reached out to you for your feedback before the final drafts. When I have some time on my hands, I’ll post your oppositions and l...See More
Susan Green Belinda Hobson, Barbara Reed White, thank you both for defending us but please, it’s not worth it. Please just take care of yourselves.
Belinda Hobson Susan Green I understand and your right.The only thing is she is not helping us but hurting us.Its not right at all
Lucy Barnes Barbara Reed White No, it wasn't me. Someone else started the GoFundMe account- another advocate. Guess you decided not to help out someone with Lyme who lost their home.
Susan Thomas, Lisa Bedell Colbert, Gabrielle Sanchez, Natalie Matiz Finkle, Teresa Carter Davis, Brenda Howard, Rory Hubert Kahn
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