IT'S JENNA LUCHE THAYER, MAYDAY PROJECT TIME & THE ROSE BUDS WHINING AGAIN!
THEY WILL NOT STOP KICKING, PICKING ON, ATTACKING AND TRYING TO DISCREDIT OTHERS.
REALLY! THAT'S ALL I WANT THEM TO DO. JUST STOP!
Mayday Project is begging patients to send a letter (copy and paste Jenna Luche Thayer's form letter) with this info below in it. This list... brett.giroir@hhs.gov, ash@hhs.gov, eric.hargan@hhs.gov, vanila.singh@hhs.gov, paula@mldse.org, sstatlende@aol.com, Enidlymeadvocate@gmail.com
Included in the letter are the following statements by Thayer... and my response in ALL CAPS.
THAYER- In the last five months, the lack of adherence to FACA and lack of transparency surrounding the Tick Borne Disease Working Group (TBDWG) has been generating public scrutiny as well as public distrust.
THIS IS BEING GENERATED BY A HANDFUL OF DISGRUNTLED PATIENTS ON A MISSION TO DESTOY OTHERS EFFORTS AND IT IS NOT WORKING. AT BEST IT IS LIKE A GNAT- ANNOYING AS ALL GET OUT.
THAYER- Now it has been revealed that the Designated Federal Officer (DFO) Richard Wolitski, Chair John Aucott and Vice Chair Kristen Honey have failed to assist the ‘Access to Care Services and Support to Patients Subcommittee’ in meeting its required scope of work to support the TBDWG.
WHAT? WHERE ARE YOU GETTING YOUR INACCURATE GOSSIP & LIES FROM? THEY HAVE DONE THEIR JOBS AND THEN SOME. DID YOU NOT LISTEN TO THE MEETING TODAY OR READ THE REPORTS?
THAYER- Apparently, this Subcommittee has not: (1) undertaken a SWOT analysis; (2) assessed and synthesized evidence or data as mandated by the TBDWG legal Charter; or (3) identified gaps as mandated by the TBDWG legal Charter.
YES, THEY ABSOLUTELY HAVE. ISN'T ANYONE PAYING ATTENTION HERE? STOP WHINING, COMPLAINING AND KICKING OTHERS AND GET WITH THE PROGRAM. STOP MAKING FALSE ACCUSATIONS!
THAYER- Given the Access to Care Services and Support to Patients Subcommittee has failed to undertake and complete critical tasks, it is not apparent their Report will assist the TBDWG in preventing new cases, improving diagnoses, and improving the care and treatment of people living with tick-borne diseases.
HELLO? THEY'VE DONE A GREAT JOB SO FAR. AND FYI- THEY AREN'T RESPONSIBLE FOR ALL YOU MENTIONED ABOVE. THAT IS WHAT THE OTHER SUBCOMMITTEES ARE CHARGED WITH DOING. IF YOUR PREFERRED MEMBER (KAREN FORSCHNER) HAD NOT QUIT MID-STREAM, MAYBE YOU COULD HAVE GOTTEN MORE OF WHAT YOU WANTED, WHATEVER THAT IS?
THAYER- The failure by the Access to Care Services and Support to Patients Subcommittee to implement their scope of work apparently is not limited to one Subcommittee. According to a few sources, other Subcommittees have not had the time and/or sufficient guidance and leadership to implement their scope of work.
THIS IS A SIX YEAR PROJECT. IT HAS ONLY BEEN A FEW MONTHS SO FAR. GIVE THEM A BREAK AND GET OFF THEIR BACKS. EVERYONE (WHO DIDN'T QUIT- AND STAYED ON BOARD AND TRIED) WAS SUPER BUSY AND ALL WISHED THEY HAD MORE TIME. THAT WAS INCLUDED AS PART OF THEIR REPORT TODAY AND IS TO BE EXPECTED. SO WHAT'S THE BIG DEAL?
THAYER- These three TBDWG ‘leaders’ have lost my respect and trust as well of that of many others in the Lyme patient and advocacy community.
I ask that you immediately:
(1) Remove Wolitski from his DFO position and replace him with a professional who undergoes (or has undergone) Federal Advisory Committee Act (FACA) training and has direct knowledge (oneself, friend or family member) of persistent and complicated cases of Lyme and coinfections (2) Move the TBDWG out from under the Office of HIV/AIDS
FOR WHAT REASON? ALL IS GOING ACCORDING TO PLAN. (THEIR PLAN, NOT YOURS.)
THAYER- (3) Remove John Aucott from the TBDWG and replace him with a medical professional who has a reputation for ethical and kind treatment of Lyme patients and advocates
WHY AREN'T YOU ATTACKING THE ONES WHO WILL BE CAUSING THE MOST HARM (IF YOU CAN'T CONTROL YOURSELVES FROM ATTACKING AT ALL)? THAT VACCINE GROUP IS GOING TO BE THE NIGHTMARE TO BEAT ALL NIGHTMARES (ASIDE FROM THE NEW IDSA GUIDELINES), YET YOU ATTACK PEOPLE ON OUR SIDE WHO ARE TRY TO HELP US? MAKES NO SENSE.
THAYER- (4) Remove Kristen Honey from the TBDWG and replace her with Dr. Enid Haller, who is widely respected and trusted by Lyme patients and advocates and has demonstrated excellent leadership, facilitation and teamwork capabilities
OBVIOUSLY HALLER HASN'T DEMONSTRATED THAT STUFF OR SHE WOULDN'T HAVE BEEN APPOINTED & THEN LET GO BEFORE PEOPLE EVEN KNEW SHE WAS THERE.
AND YOU WANT KRISTEN HONEY GONE BASED ON HER RELIGION AS YOU SAID RECENTLY IN ONE OF YOUR LETTER TO YOUR FRIENDS? COME ON! YOU THINK BECAUSE SHE IS A CHRISTIAN AND FOLLOWS THE BIBLE THAT SHE SHOULDN'T HAVE ANY INPUT ON A TBD COMMITTEE? THAT IS A SUPER SICK REASON- SO BIGOTED. IT REMINDS ME OF THE KKK. FOR A 'SO-CALLED' HUMAN RIGHTS ADVOCATE, YOUR WORDS AND ACTIONS TAKEN AGAINST CHRISTANITY ARE UNBELIEVABLE.
THAYER- (5) Postpone the May 10, 2018, TBDWG Meeting (on-line) and the May 15-16, 2018, TBDWG Meeting (in-person) to allow: the TDBWG to properly review and incorporate the 1,000+ email submissions to ‘tickbornedisease@hhs.gov’
YOU WANT TO DELAY ALL OF OUR POTENTIAL PROGRESS SO YOU CAN SEE IF THEY WILL POST YOUR EMAILS THAT WERE NOT EVEN SUBMITTED PER THE SAME RULES THAT EVERYONE ELSE HAD TO FOLLOW? HOW CRAZY IS THAT? PLEASE STOP LEADING PATIENTS ON, GIVING THEM FALSE HOPE, AND GETTING THEM TO WASTE THEIR TIME AND ENERGY ON YOUR DEAD END EFFORTS.
THAYER- × for proper implementation of the all Subcommittees’ scopes of work, including literature and project reviews
THEY HAVE IMPLEMENTED IT. PLUS, THIS IS A MULTI-YEAR PROJECT. GIVE IT A REST! LET THEM DO THEIR WORK WITHOUT YOUR INTERFERENCE. PLEASE!
THAYER- × According to the TBDWG mandate, the Subcommittee reports should reflect what has already been published in the science/health literature and should have identified the gaps in this literature and government projects.
THAT IS EXACTLY WHAT HAPPENED. PREVIOUS PUBLICATIONS AND IDENTIFYING GAPS- THEY PRESENTED IT TODAY- AS PLANNED AND ON SCHEDULE.
THAYER- SPECIAL NOTE TO PAULA JACKSON JONES AND SHEILA STATLENDER – As persons who claim to represent the Lyme patients’ priorities, take note that transparency of the TBDWG is of immediate and utmost importance to a great number of Lyme patients and advocates.
WHAT ON EARTH CAN YOU POSSIBLY BE EXPECTING THEM TO DO THAT IS THEIR JOB TO DO AND THEY HAVEN'T DONE YET? IF YOU ARE WAITING FOR THE EMAILS YOU PUSHED PATIENTS TO WRITE TO BE PUBLISHED AND PLAN TO CONTINUE SLIMING EVERYONE IN THE MEANTIME YOU DO NOT HAVE THE PATIENTS BEST INTERESTS AT HEART AND IT IS ALL ABOUT YOU, YOU, YOU.
THAYER- Thank you for your consideration of this serious matter. YOUR NAME