Jenna Luche Thayer- More Attacks on Advocates & Doctors

APRIL 28, 2018- WHY IS JENNA LUCHE THAYER- A LYME PATIENT- CONTINUING TO DISCREDIT AND SLAM DEDICATED, LONG TIME, HARD WORKING LYME PATIENT ADVOCATES & ILADS DOCTORS WHO ARE TRYING THEIR BEST TO HELP US?

WHY DOESN'T JENNA LUCHE THAYER KNOW THAT WHEN WORKING WITH A GROUP- PER THEIR INVITATION/SELECTION- YOU MUST FOLLOW THE RULES PREVIOUSLY SET UP BY THE HOST (FEDERAL GOVERNMENT)... AND PATIENTS, NO MATTER HOW NASTY THEY GET OR HOW MUCH THEY WHINE AND CRY, SIMPLY CAN'T CHANGE THOSE FEDERAL RULES MID-STREAM TO SUIT THEMSELVES?

WHO MADE JENNA LUCHE THAYER THE JUDGE AND JURY OF THE FEDERAL TICK BORNE DISEASE WORKING GROUP ANYHOW? WHY CAN'T JENNA LUCHE THAYER GIVE THE WORKING GROUP TIME TO DO THEIR JOBS? IT IS A MULTI-YEAR EFFORT, BUT SHE HAS BEEN ENCOURAGING LYME PATIENTS TO CONTINUE TO WRITE TO [HARASS] THE MEMBERS AND THE WORKING GROUP BEFORE THEY EVEN REACHED THE FOUR MONTH MARK- BEFORE EVEN ONE REPORT HAS BEEN PUBLISHED!

WHY DOES JENNA LUCHE THAYER KEEP TELLING OTHERS HOW SHE THINKS THEY SHOULD DO THEIR JOBS (GOING AGAINST FEDERAL LAWS IF THEY DO SO) AND WHY IS SHE DOING IT FROM THE OUTSIDE LOOKING IN, AND MAKING A MENACE OF HERSELF IN GENERAL WITH ALL THESE BELLOWING, BACK SEAT DRIVING INSTRUCTIONS? ONE WELL WRITTEN (RESPECTFUL) LETTER FROM HERSELF TO THE TBD WORKING GROUP IS ALL THAT IS NEEDED TO GET HER PERSONAL OPINION AND THOUGHTS ACROSS AND ON THE RECORD.

HOW MANY MORE NIT-PICKING, FLAKY REASONS WILL SHE CONTINUE TO COME UP WITH TO TRY TO DISCREDIT OUR LYME PATIENT ADVOCATES & OUR DOCTORS?

WHY IS JENNA LUCHE THAYER ONLY SUPPORTING THREE MEMBERS OF THE TBD WORKING GROUP... TWO PEOPLE WHO CLAIM THEY WANT TO HELP LYME PATIENTS, WHO UP AND QUIT ALMOST IMMEDIATELY- SUSAN GREEN AND KAREN FORSCHNER- AND ONE THAT JENNA LUCHE THAYER PERSONALLY PUSHED AND SUPPORTED AS A REPLACEMENT- ENID HALLER- THAT RECENTLY "DEPARTED" FROM THE GROUP?

[BTW- ENID HALLER WAS PUT ON THE GROUP, HAS ALREADY DEPARTED AND WAS REPLACED- YET THIS LETTER CONDRADICTS ITSELF AND INDICATES JENNA LUCHE THAYER DOESN'T KNOW AS MUCH AS THE PUBLIC WHO LOOKS AT THE OFFICIAL PUBLIC INFORMATION SITE, OR SHE IS JUST VERY CONFUSED.]

JENNA LUCHE THAYER'S UNIFORMED ACTIONS HERE PRESENT A HUGE DISSERVICE TO OUR ONGOING EFFORTS AND ATTEMPTS AT PROGRESS. TO DATE SHE HAS PUBLICLY CRITICIZED, ATTACKED AND/OR TRIED TO DISCREDIT THE LYME DISEASE ASSOCIATION (LDA) & ITS PRESIDENT, LYME DISEASE.ORG & ITS CEO, MULTIPLE VOLUNTEER PATIENT ADVOCATES & SUPPORT GROUPS & LEADERS, AND OUR LYME TREATING DOCTORS.

THE BABBLE BELOW IS JENNA LUCHE THAYER'S MOST RECENT LETTER TO HER LYME "FRIENDS" [HER SUPPOSED AUDIENCE]. AS USUAL, IT IS VERY LONG AND BORING. FOR THAT REASON I'VE HIGHLIGHTED IN RED SOME OF THE COMMENTS SHE'S MADE SO YOU KNOW IN HER OWN WORDS WHO SHE IS GOING AFTER THIS TIME. [SCROLL DOWN A GOOD BIT TO SEE THE RED SECTIONS.]

JENNA LUCHE THAYER SHOULD STOP HARASSING/ATTACKING AND TRYING TO DISCREDIT AND DISRUPT THE INDIVIDUAL MEMBERS (LYME PATIENTS, DOCTORS, GROUPS & ADVOCATES) FROM THE LYME COMMUNITY AND THEIR WORK TO DATE, AND THE TBD WORKING GROUP IN GENERAL.

THE ABOVE BLAH BLAH BLAH, AS USUAL, IS MY OPINION.

LUCY BARNES

AFTERTHEBITE@GMAIL.COM

• Published on April 27, 2018

consulting Senior Advisor - US Government, United Nations, non-profits, corporate social responsibility programs

Friday, April 27, 2018. Jenna Luché-Thayer

Dear friends,

On Wednesday April 25th, I promised to share information surrounding the termination without cause of Dr. Enid Haller.

However, I have since been informed that Enid’s case is under legal consideration. Therefore, in order not to interfere with Enid’s case, I cannot, at this point in time, divulge the details surrounding her termination.

However, I am free to share with you:

· The contents of the PowerPoint given by the Tick Borne Disease Working Group’s (TBDWG) Designated Federal Officer (DFO) Richard Wolitski. This PowerPoint provided detailed instructions to the ‘Access to Care Services and Support to Patients Subcommittee’ regarding the tasks they were to complete to support the legal mandate of the TBDWG charter.

· The views on transparency held by two Lyme patients advocates in the ‘Access to Care Services and Support to Patients Subcommittee’

This information is followed by an ACTION REQUEST at the end of the article. PLEASE take the five minutes necessary to complete this action.

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PART ONE: Content from Wolitski’s PowerPoint

PART ONE.1. Wolitski’s Instructions to the ‘Access to Care Services and Support to Patients Subcommittee’

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Purpose of the Subcommittees [SLIDE 3]

· Support the Working Group by providing, assessing & synthesizing evidence

· Identifying, assessing & summarizing the data

· Identifying gaps

· Prevent new cases, improve diagnoses & improve the care & treatment of people living with tick-borne disease

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Purpose of Inventory [SLIDE 9]: The purpose of the Inventory of HHS Tick-Borne Disease Projects and Activities is to provide a summary of HHS activities related to tick-borne diseases, including:

· What the agencies are doing & spending each year with regard to tick-borne diseases

· Epidemiological activities related to tick-borne diseases

· Basic, clinical & translational tick-borne disease research related to the pathogenesis

· Prevention, diagnosis & treatment of tick-borne diseases

· Gaps in tick-borne disease research described above.

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Inventory Review [SLIDE 10]: Are there categories missing from Section A, that are relevant to our subcommittee and should be included? Current listing of categories:

· Prevention

· Vector Control Education

· Basic Research

· Research: Diagnostics, Vaccine, Treatment, Vector Control

· Epidemiology and Surveillance

· Research-Human Translational Research (involving Human Beings)

· Medical Care and Treatment

· Testing Programs

· Mental Health Services & Mental Health Support Groups

· Other Supportive Services

· Capacity Building and Technical Assistance

· Policy Development

· Other________________

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Inventory Review [SLIDE 12 and 13]: Is there information missing from Section D of the Agency Overview, that is relevant to our subcommittee and should be included? Current List of Information Requested:

· Total funding for FY17 & Total funding for FY18 if available

· Please provide total funding for FY10-FY16 if available

· Number of full time employees (FTEs) supported with these funds

· Number of additional FTEs dedicated to tick-borne disease activities

· Number of fellows, contractors, or other support staff (not included above) supported with these funds

· Which organizational units in your Agency or office have responsibility for tick-borne diseases

· Which one of these if any has primary responsibility for tick-borne diseases

· Name of Director or Chief of primary unit

· Agency person of contact (POC )for tick-borne diseases

· Does your agency or office have a strategic plan for addressing tick-borne diseases or are they included in your agency’s strategic plan or other priority setting documents that guide your work?

· If yes, include a link to the documents or attach a file

· What are the strengths of your Agency or office’s response to tick-borne diseases?

· What are the future opportunities for improving efficiency, effectiveness, and/or impact of your activities for tick-borne diseases

· What do you see as the weaknesses of your agency or office’s response to tick-borne diseases?

· What do you see as threats to the future of your agency or office’s response to tick-borne diseases?

· What unmet needs have been identified through your agency or office’s work on tick-borne diseases?

· What educational or training tools, toolkits, products or resources have been developed by your agency or office for tick-borne diseases?

· For 2017, list all publications the agency staff authored or co-authored about tick-borne diseases. Include surveillance or agency authored reports. Provide links where possible.

· How does your agency or office engage the public and other stakeholders in planning activities and obtaining feedback on activities?

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Inventory Review [SLIDE 14 and 15]: Is there information missing from Section D of the Intramural and Extramural Projects or Activities Sections, that is relevant to our subcommittee and should be included? Current List of Information Requested:

· Name of project or activity, Purpose of project or activity

· Progress/products and results to date, Anticipated products and results

· In what year was this project or activity started?

· Total project/activity funding to date, Current project period (FY-FY)

· Total project/activity funding in FY17

· Number of awards

· What type of entities are funded (i.e. CBOs, Health Centers, Universities, etc.)?

· In which states are grantees located?

· What are the strengths and future opportunities of this project or activity?

· What are the weaknesses and threats of this project or activity?

· Organizational unit responsible for this project or activity (i.e. Division, Bureau, Branch)?

· Project Person of Contact (POC)

· Links to website or other digital content

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Agenda for Second Subcommittee Meeting [SLIDE 17]: Product 2: List of prioritized issues. Perform SWOT [Strengths, Weaknesses, Opportunities, Threats] analysis.

What are the most important things to consider? Goals, Issues, Challenges we want to address in this Subcommittee

For prioritization consider: The numbers of people who may affected, How big the effect will be, Feasibility of implementing

Consider timeline for deliverables

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PART ONE.2. Did the ‘Access to Care Services and Support to Patients Subcommittee’ Undertake and Complete the Following Tasks Outlined in Wolitski’s PowerPoint?

Purpose of Inventory [SLIDE 9] : The ‘Access to Care Services and Support to Patients Subcommittee’ DID NOT review and summarize the Inventory of HHS Tick-Borne Disease Projects and Activities to provide a summary of HHS activities related to tick-borne diseases.

Inventory Review [SLIDE 10] : The ‘Access to Care Services and Support to Patients Subcommittee’ DID NOT discuss the categories in Section A and DID NOT identify categories missing from Section A.

Inventory Review [SLIDE 12 and 13] : The 'Access to Care Services and Support to Patients Subcommittee’ DID NOT discuss the categories in Section D of the Agency Overview & DID NOT identify related information missing from Section D.

Inventory Review [SLIDE 14 and 15] : The ‘Access to Care Services and Support to Patients Subcommittee’ DID NOT discuss the categories in Section D of the Intramural and Extramural Projects or Activities Sections and DID NOT identify related information missing from Section D.

Agenda for Second Subcommittee Meeting [SLIDE 17] : The ‘Access to Care Services and Support to Patients Subcommittee’ DID NOT undertake a SWOT analysis to arrive at their prioritized issues for their Report to the TBDWG.

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PART ONE.3. In this case, did the ‘Access to Care Services and Support to Patients Subcommittee’ meet the ‘purpose of the Subcommittees’?

Purpose of the Subcommittees [SLIDE 3] : It DOES NOT appear that the ‘Access to Care Services and Support to Patients Subcommittee’ has supported the Working Group by:

· providing, assessing and synthesizing evidence or data as mandated by the TBDWG legal Charter

· identifying gaps as mandated by the TBDWG legal Charter

Given the ‘Access to Care Services and Support to Patients Subcommittee’ has failed to undertake and complete these 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 disease.

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PART ONE.4. JENNA’S COMMENTS

Who is responsible for these failures by the Access to Care Services and Support to Patients Subcommittee to meet their ‘purpose'?

From my experience on four federal Working Groups, the person most responsible for these failures is the DFO. I say this because he is the one in charge with managing this entire process and familiar with these kinds of systematic bureaucratic reviews. In this case, it is not apparent Wolitski did anything to ensure this Subcommittee undertook and completed these tasks.

Following the DFO, it is the Chair John Aucott and Vice-Chair Kristen Honey who are responsible for these failures as they are the TBDWG leadership responsible for ensuring that patient perspectives and priorities are fully integrated into the TBDWG final Report to Congress.

Based on my experience, Wolitski, Aucott and Honey have demonstrated seriously poor judgement and leadership failure as they have allowed an important Subcommittee to fail to meet their required scope of work.

Following the DFO, the Chair and Vice-Chair, it is the Subcommittee Co-Chairs, Scott Cooper and Paula Jackson Jones, who failed in their leadership roles to ask for help from the DFO, the Chair, and the Vice Chair in meeting their required scope of work.

Furthermore, the Co-Chairs could have asked for an extension of time for the Subcommittee. The TBDWG’s legal charter has a hard date for the final Report to be delivered in December 2018. This means, in reality, the Subcommittee has many months to undertake and complete their serious and necessary work.

TO NOTE: 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.

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PART TWO: The Role of Lyme Advocates Regarding Transparency

PART TWO.1. Lyme Advocate Claims Transparency Not Necessary

April 4, 2018: During this ‘Access to Care Services and Support to Patients Subcommittee’ meeting, member Sheila Statlender says, ‘that transparency is not necessary at this point in time’.

PART TWO.2. Another Lyme Advocate Claims Transparency Not Necessary

April 18, 2018: During this ‘Access to Care Services and Support to Patients Subcommittee’ meeting, Co-Chair Jones and member Statlender say ‘that transparency is not necessary at this point in time’.

PART TWO.3. JENNA’S COMMENTS

The Lyme community has sent hundreds and more complaints, questions and public comments to the TBDWG regarding its lack of transparency and violations of FACA law. Nevertheless, Wolitski (and those TBDWG leaders he conferred with) chose not to systematically address these concerns and deliver the transparency promised during the December 11-12, 2017 Public meetings.

Nevertheless, these two Lyme advocates, Statlender and Jones, should have been very aware of the widespread discontent and distrust within the Lyme patient community regarding the lack of transparency surrounding the TBDWG and its Subcommittees. Communications on social media regarding these issues have been constant, prolific and globally shared.

Furthermore, it is hard to fathom why these two advocates would not push for transparency given the long history of the Lyme patient and advocacy community being shut out from governmental decision-making bodies that directly and adversely impact their access to diagnosis and treatment options that meet internationally accepted standards.

-------------------------------- ACTION REQUEST ----------------------------------

If you agree with this assessment, copy, cut and paste the following and send it in an email to:

...……………………………………………………………………………………………………….…..……

brett.giroir@hhs.gov, ash@hhs.gov, eric.hargan@hhs.gov, Paula Jackson Jones <paula@mldse.org>, Sheila Statlender <sstatlende@aol.com>, Enidlymeadvocate@gmail.com

Subject: Immediate Replacements Needed for Tick Born Disease Working Group (TBDWG) DFO Richard Wolitski, Chair John Aucott and Vice Chair Kristen Honey

Dear Sirs and Madams,

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.

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.

Apparently, this Subcommittee has not: (1) undertaken a SWOT analysis; (2) assessed & synthesized evidence or data as mandated by the TBDWG legal Charter; or (3) identified gaps as mandated by the TBDWG legal Charter.

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.

TO NOTE: 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.

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) 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

(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

(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

MY NOTE- SEVERAL DAYS BEFORE JENNA LUCHE THAYER WROTE THIS LATEST BLURB, AN OFFICIAL ANNOUNCEMENT POSTED PUBLICALLY ON 4/24/18 STATES ENID HALLER IS "DEPARTING" FROM THE TBD WORKING GROUP AND HAS ALREADY BEEN REPLACED WITH A PATIENT ADVOCATE FROM PENNSYLVANIA. DURING HER OUT OF CONTROL FRENZIE, JENNA LUCHE THAYER IS OBVIOUSLY NOT BOTHERING TO KEEP UP WITH THE TBD WORKING GROUP'S ACTIVITIES AND DOESN'T APPEAR TO KNOW ANYTHING MORE THAN WHAT THE PUBLIC IS PRIVY TO. ???

(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

· for proper implementation of the all Subcommittees’ scopes of work, including literature and project reviews

· for the persons replacing DFO Woltiski, the Chair and Vice-Chair get up to speed on their duties and responsibilities

The final draft report sections from each of the Subcommittees deserve proper attention to public submissions. 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.

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.

Thank you for your consideration of this serious matter.

YOUR NAME

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Faithfully,

Jenna

Jenna Luché-Thayer. 33 years working globally on the rights of the marginalized. Former Senior Advisor to the United Nations and the US Government. Director, Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes. Founder, Global Network on Institutional Discrimination™ - Holding institutions accountable for political and scientific solutions. Email - jennaluche@gmail.com

Link Here- https://www.linkedin.com/pulse/tick-borne-disease-working-groups-leadership-fails-jenna-luche-thayer/

Additional Background

Jenna Luche Thayer- More Whining & Complaining

https://sites.google.com/site/lymelegislation/dr-jaller/jenna-luche-thayer--stirring-it-up-again

Mayday Project Shares Jenna Luche Thayer’s Posts

https://sites.google.com/site/lymelegislation/dr-jaller/the-mayday-project--tbd-working-group-mess-1

More Mayday Project, Jenna Luche Thayer & Karen Forschner

https://sites.google.com/site/lymelegislation/dr-jaller/the-mayday-project--tbd-working-group-mess-1/more-blah-blah-blah-from-mayday-project-3-30-18

Karen Forschner Going Off

https://sites.google.com/site/lymelegislation/dr-jaller/the-mayday-project--tbd-working-group-mess-1/karen-forschner-going-off-4-5-18