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Press Release LDA/Columbia CME Lyme Conference Oct 2

lda lyme conferenceCONFERENCE COMPLETED Press Release: LDA/Columbia Lyme & Other TBD: Research for a Cure
Virtual, Saturday, October 2, 2021
 
WATCH Quality Research Studies, Understand new treatment options & Grab improved patient quality of Life!
 
The conference features faculty consisting of clinicians and researchers from across the US and Canada. It is designed for physicians and researchers, and the public is invited to register.
 

Virtual Conference Concluded Oct. 2

  • All previously registered attendees  for the conference October 2 have  through October 24 to look at the recorded conference online. If you want to replay the conference, do the following:
    • Log in through the Attendee Hub:  https://cvent.me/d924Z3
    • Then click on “Video Replay” – click on each session and there is a Replay button.
  • All CME registered attendees, you must log into the Attendee Hub https://cvent.me/d924Z3 and click on the button for CME evaluation form which you MUST fill out.
    • CME certificates from Columbia University will be automatically sent by end of October. 

DON’T MISS OUT – REGISTER TODAY!
Scholarships Available

Click here for PRESS RELEASE – prnewsire.com

or see pdf below (3 pages)

2021_PressRelease Virtual CME Lyme_TBD Conference




2021 Annual Scientific Conference

Register Early Bird Now: Lyme Disease Association-Columbia Lyme Conference

The Lyme Disease Association Inc. and Columbia University Vagelos College of Physicians & Surgeons are jointly providing the 21st annual CME scientific conference, Lyme & Other Tick-Borne Diseases: Research for a Cure, virtually, on October 2, 2021. This conference is designed to meet the high standards for continuing medical education credits for medical & health professionals and researchers. Exhibitors are welcome to register. It is also open to the general public (adults only).   Attendance may be limited!   Please freely share this conference information on website, social media, etc..

Don’t Miss Out! Early Bird registration ends on August 15.

FOR DETAILS GO TO CONFERENCE WEBSITE


All information can be found on the conference website link above.  Below are a few quick facts.

Registration fees & dates:

  • CME $275 Early Bird / $325 after Aug. 15th/ more “at door”
  • Non-CME $225 Early Bird / $260 after Aug. 15th/ more “at door”

Exhibitor Booth Registration:

  • Ends entirely on September 15, 2021. More Info

Scholarship availability: 

  • Limited number of scholarships will be available for certain medical students, medical professionals and health department representatives. More Info

 


 

 




Researchers: Submit Pilot Study Concepts to Columbia Clinical Trials Network

Deadline Aug. 1   The Lyme Disease Association Inc. is notifying researchers that the Clinical Trials Network established with a grant from the Steven & Alexandra Cohen Foundation to Columbia University announces that the website is now accepting Pilot Study Concept submissions (July 1 to Aug 1).  

The Clinical Trials Network welcomes research clinicians and investigators from academic institutions and foundations to submit proposals. The CTN Study Review Committee will review submissions for consideration for further development into a pilot study; each pilot study will be conducted at one of the CTN investigation sites.  The CTN has funding to support 1-2 small pilot studies each year.  Current CTN network affiliates include investigators from Columbia University Irving Medical Center in New York City, Johns Hopkins University Medical Center in Baltimore Maryland, and Children’s National Hospital in Washington D.C.  The CTN Study Review Committee includes the core CTN members, clinical research experts, and academic and community clinicians. Results of the CTN pilot studies – if favorable – will lead to consideration for larger Randomized Controlled Trials.    

The deadline for the first round of submissions for treatment research ideas from the research scientists and clinicians is August 1, 2021.  The submission period opens July 1.   

We thank all clinicians and investigators in advance for participation in this process, as your proposal may lead to a transformative study. 

To submit a Pilot Study Proposal:  


 

To find out more information about the Network, go to the Lyme Disease Association link below.

Read about the establishment of the Network

 




Review of Evidence Supporting IDSA Guidelines EM Treatment in US

2014 ElizabethMaloneyMD
Elizabeth Maloney, MD

The IDSA guidelines for Lyme disease contain 2 recommendations for antibiotic therapy for patients with erythema migrans (EM) rashes. The first recommendation identified which antibiotics were preferred and the second specified therapy duration.

In “Evidence-Based, Patient-Centered Treatment of Erythema Migrans in the United States,” Antibiotics 2021, author Elizabeth L. Maloney, MD, reviews the US trial evidence on EM rashes, problems of the IDSA recommendations considering that evidence, and provides evidence-based patient-centered strategies for managing patients with EM. “The EM rash is the hallmark finding of early disease,” along with other symptoms. “In light of the physical and financial costs, identifying and promoting highly effective therapeutic interventions for US patients with erythema migrans (EM) rashes that return them to their pre-infection health status should be a priority.” 

The paper states “when promptly diagnosed and appropriately treated with antibiotics, early Lyme disease is curable.” Untreated and inadequately treated infections can progress to long-term sequalae. Patient-centered care–defined by the National Academy of Medicine—“…is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions. Patient-centered outcomes are outcomes that matter to patients, such as reductions in symptoms or improvements in quality of life.” In recent times, patient-centered outcomes are becoming part of trial designs.

Dr. Maloney uses a Medline search with specified criteria to identify the trials conducted in the US for the named antibiotics recommended by IDSA Lyme guidelines.  There were 25 results of which 8 met the search criteria, other 17 were EM trials in Europe, disseminated disease in Europe, European antibiotic retreatment, culture difficulty, and tick bite prophylaxis. The US trials were old, were small, and 2 had high non completion rates of 40%+ and two others had single arm with 20%+ non—completion, thus Dr. Maloney indicates these should not be included to determine treatment efficacy.

The paper goes on to examine the remaining US trials, several of which used disease centered endpoints, not patient centered endpoints, and all those trials used what is currently considered outdated statistical methodology, pointing out the weaknesses of the evidence used by IDSA. In the conclusion, Dr. Maloney highlights the need for more research.

Click here to read the entire study

Click here to read Johns Hopkins Lyme Research Center Challenges IDSA Guidelines & Addresses Lyme-COVID

Click here to see video of Bransfield & Smith Discuss IDSA Guidelines




Current Lyme Reporting in Non-Endemic States Needs Tick-Bite Reporting

Data from a survey of respondents with self-reported tick bite encounters who concurrently reported a clinical or serological Lyme disease (LD) diagnosis from non-endemic states for Lyme disease was published in the journal Healthcare, June 21, 2021.  Focusing on Texas, which due to large size, diverse climate, and ecological conditions, reflects environments that promote ticks, the scientists compared data from the self-reported LD patients with county-level confirmed cases of LD from the Centers for Disease Control & Prevention (CDC), and from serological canine reports. CDC has characterized states as low-incidence or non-endemic for Lyme, including Texas.

The findings indicated that “tick bite reports accurately overlapped with the geographic patterns of those patients previously known to be CDC-positive for serological LD and with canine-positive tests for Borrelia burgdorferi, anaplasmosis, and ehrlichiosis, as well as within neighboring counties and ecological regions. LD patient-reported tick bite encounters, corrected for population density, also accurately aligned with official CDC county hot-spots.”

Human LD cases that meet CDC surveillance criteria are compiled and reported. However, no agency or organization tracks LD cases from patients who do not meet CDC criteria. The CDC publishes LD cases by county, but the data is not always captured by county of exposure. Some cases may have been acquired during travel and not locally acquired in the county of diagnosis. 

Some patients diagnosed with LD will have co-infections from other tick-borne diseases (TBDs) —  “…the CDC and many states do not provide human TBD data at the county level for use in research or analysis.”  The lack of this data available, coupled with a difficult-to-diagnose disease such as LD underscore the importance of using patient self-reported disease and official counts of disease as “epidemiological tools when disease can be linked to an event, such as a tick bite,” even though these methods are not widely used methods of surveillance.

“Tick-Borne Surveillance Patterns in Perceived Non-Endemic Geographic Areas: Human Tick Encounters and Disease Outcomes” by Sarah P. Maxwell, Connie L. McNeely, Kevin Thomas, and Chris Brooks indicates the following, “A finding of self-reported LD cases (via clinical or serological diagnosis), supported by known tick bites in CDC-positive ecological regions (eco-regions), provides an indicator that patient-reported LD and CDC-confirmed cases are strongly tied. This study uses county level, human, canine, and ecological data, providing an investigative snapshot of geographic overlap in Texas.”

Read full article here

More information on Diagnosis by Geography here (LDA website)

Read CDC Lyme Surveillance Criteria here

 

 




Understanding the Persistent Symptoms in Lyme Disease – John Aucott, MD, Johns Hopkins Medicine

To avoid persistent symptoms in Lyme disease it is crucial to recognize the Lyme disease rash, when present, and diagnose and treat early and adequately. Persistent symptoms can be multi-system and debilitating, and include severe fatigue, musculoskeletal pain, cardiac complications, neurologic symptoms, and cognitive problems.

 




FLCCC Announces Treatment Protocol for Long Haul COVID-19

A new protocol for patients suffering from Long Haul COVID-19 Syndrome (LHCS) has been developed in a collaboration led by Dr. Mobeen Syed (“Dr. Been”), Dr. Ram Yogendra, Dr. Bruce Patterson, Dr. Tina Peers, and the Front Line COVID-19 Critical Care Alliance (FLCCC). The protocol, I-RECOVER, is based on the group’s experiences using certain therapies with a focus on the drug ivermectin. The group observed “consistent, sustained, and often profound” clinical responses with the I-RECOVER protocol. The protocol has also been used to treat post-vaccine inflammatory syndromes with similar success.

LHCS consists of often debilitating symptoms such as malaise, headaches, generalized fatigue, sleep difficulties, smell disorder, decreased appetite, painful joints, dyspnea, chest pain and cognitive dysfunction. LHCS does not only occur after severe COVID-19 cases – it often affects mild-to-moderate cases and younger adults. LHCS symptoms after COVID-19 infection or vaccination can occur from 10% up to 80% of the time. (LHCS from vaccination is likely due to monocyte activation by the spike protein from the vaccine).

Studies of treatment options for LHCS are few, and there are no pharmacologic treatments offered. Due to the large numbers of patients suffering with LHCS around the world, the I-RECOVER protocol was developed.

LHCS is very similar to the chronic inflammatory response syndrome (CIRS)/myalgic encephalomyelitis/chronic fatigue syndrome and mast cell activation syndrome. Delayed treatment with ivermectin when early symptoms occur, will most likely cause a high viral load, which would increase the risk and severity of LHCS.

As with all FLCCC Alliance protocols, the I-RECOVER may change as scientific and clinical data evolves.

Click here for FLCCC article and I-RECOVER protocol




2021 Year in Review

Congressman Gottheimer: Lyme Press Conference on Federal Legislation – 6/10/21, West Milford, NJ

Photo Credits: LDA file photos; Doreen Edwards, Tick Squad

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Congressman Gottheimer: Lyme Press Conference on Fed. Leg.– LDA Pres. Speaks

Rep. Josh Gottheimer & Pat Smith, LDA President at Press Conference, West Milford, NJ

Congressman Josh Gottheimer (NJ-5-D) held a press conference to discuss Lyme disease and three bi-partisan bills currently introduced into the House of Representatives. He spoke about the seriousness of the disease in NJ and in his district and of the need for funds to help with diagnostics and new treatments and help for the patients suffering from persistent symptoms. 

LDA President Pat Smith was asked to speak at the press conference on June 10, 2021 in West Milford, NJ, and discussed her personal family involvement with Lyme and tick-borne disease and how the LDA has been active in Washington fighting for help for patients which includes the establishment of the HHS Tick-Borne Disease Working Group, where she served for four years, and the recent introduction of the Children Inflicted by Lyme Disabilities Act, CHILD Act 2021 (HR 3636), for which LDA initiated and helped in development of the language.
 
The CHILD Act 2021 was introduced in the house by Lyme Caucus Co-chair Congressman Christopher Smith (NJ-4-R) and co-sponsored by Congressman Gottheimer and Congressmen Henry Cuellar (TX-28-D), Bill Posey (FL-8-R), and Brian Fitzpatrick (PA-1-R).  The purpose of the bill is “To amend the Individuals with Disabilities Education Act (IDEA to recognize more clearly that Lyme disease can cause disabilities that affect the education of children and to enhance educational services and related services for children with Lyme disease and other tick-borne diseases and for other purposes.” Children can have manifestations including cognitive impairment, mental confusion, memory loss, headaches, difficulty concentrating, speech difficulty, visual and hearing problems, dizziness, mood swings, outbursts, depression, sleep disturbance, OCD, and seizure activity, all of which affect their educational experience. Read LDA article on the Bill
 

Patients and family members & advocates with Pat Smith, LDA, at the Press Conference

Congressman Gottheimer also co-sponsored HR3637, introduced by Smith, authorizing HHS to be able to launch prize competitions for research. HHS and the Alexandra and Stephen Cohen Foundation have formed a public private partnership, LymeX, which will host competitions. The idea is based on the successful KidneyX program.  The LDA is on the webinars group for LymeX working to develop more trust with government and more ways to implement strategies for new research.

 
Congressman Gottheimer also co-sponsored The Stamp Out Lyme Act introduced by Antonio Delgatto (NY-19-D) which would provide a stamp to benefit Lyme research. The bill has 11 co-sponsors including Smith. The LDA worked on earlier versions of this bill in a prior Congress.
 

“Lyme disease can be brutally debilitating, hard to detect and treat, and cause real long-term health issues. It’s a problem that we must try to solve,” said Congressman Josh Gottheimer. “The federal action I’m announcing today will boost investment for Lyme disease research, incentivize the development of new treatments, and amend federal law to accommodate the health impairments that can be caused by Lyme disease in children, so they can receive the specialized education and care they need.”

Pat Smith at Podium. Photo Credit: Doreen Edwards, Tick Squad

“It is imperative that we get help for the thousands of sick Lyme patients — 29% are children. We need Congress to act quickly to not only provide money but to ensure the monies are actually being used to help Lyme and tick-borne disease patients by providing cutting edge diagnostics and treatment therapies for the 20+% who remain sick after a short course of antibiotics. I thank Congressman Gottheimer and the House Lyme Disease Caucus for their continued efforts in this area,” said Pat Smith, President, Lyme Disease Association Inc.

Several Lyme patients and family members spoke about their struggle with Lyme disease. Advocate Dorreen Edwards from Tick Squad in Sussex County spoke on the need to provide more education for schools and for health care providers. LDA partnered with the Tick Squad in 2019 to present a Lyme conference at Sussex County Community College in 2019. Read LDA article on Conference

Terry Duffy, Commissioner, Board of County Commissioners, County of Passaic and Don Weise, New York – New Jersey Trail Conference, also spoke on the issues surrounding Lyme disease.

Watch video of entire press conference on facebook.


 

 




IPM Pest Alert – Asian Longhorned Tick

Asian Longhorned Tick AlertNorth Central Integrated Pest Management Center (IPM) has issued a new pest alert focusing on the Asian longhorned tick (ALT), which includes details about the tick’s life cycle, identification, and management options. Females can reproduce without mating with a male, causing a threat to livestock due to large-scale infestations on one animal leading to stress, blood loss and death. According to studies, ALT may spread disease such as Rocky Mountain spotted fever and other tick-borne illnesses, as they feed on multiple hosts throughout their lives. In it’s native East Asia, ALT can transmit Rickettsia japonica, which causes Japanese spotted fever, and severe fever with thrombocytopenia syndrome (SFTS) virus, among others.

ALT is invasive in Australia, New Zealand and the United States. ALT was found in New Jersey in 2017, and as of February 2021, it is found in 15 states in the U.S.


The Public Tick IPM Working Group produced this pest alert with support from the IPM Institute and the USDA National Institute of Food and Agriculture, Crop Protection and Pest Management Program through the North Central IPM Center

Click here for IPM Pest Alert – Asian Longhorned Tick

Click here for North Central IPM Newsletter Article

Click here for LDA website information on the Asian Longhorned tick