As I reflect on 2020, it has been a year like no other. Despite the challenges, chaos and uncertainty of COVID, exciting progress has been made in the field of Lyme disease. Below I'm sharing a few highlights from 2020 and share my Hope as we move forward into 2021.
The first BIG news in 2020 was at the end of January, when the CDC updated their website with guidance that Lyme could be spread from a mother to her fetus/baby. This important acknowledgement of the risk of vertical transmission of Lyme will usher in fresh opportunities for collaborative research and clinical investigation.
We are expectantly awaiting Health Canada and The Public Health Agency of Canada (PHAC) to update their website on Lyme disease for both the public and healthcare professionals, to acknowledge both the risk of maternal-fetal transmission of Lyme and also the risks of adverse outcomes especially in the setting of untreated Lyme in pregnancy as has already been highlighted in a 2018 Systematic Review on Gestational Lyme by PHAC authors.
At the end of July, The Public Health Agency of Canada issued a call for feedback and input on their proposed website updates on Lyme disease. Canadian advocacy leaders wrote a comprehensive collective letter of response with detailed, evidence-based recommendations including the importance of the Agency to provide clear acknowledgement of the risk of maternal-fetal transmission of Lyme.
New Canadian Lyme and Pregnancy Research
The second BIG news item was in September, a ground-breaking research study on Lyme and Pregnancy was launched by the McMaster University Midwifery Research Centre, under the leadership of a top Canadian researcher, Dr. Elizabeth Darling. This research opportunity remains OPEN to new participants. Researchers will be comparing the health of people who have been diagnosed or suspected to have Lyme during a pregnancy and their offspring to people/offspring who have not.
This Canadian-led research is the first of it's kind and furthermore, the first North American research into this alternate mode of transmission in 25 years! This research leads with principles of patient engagement and is open to participants from Canada, US, Internationally (participation is not restricted to any country or geographic location.) Enrolment is open to ANY person with a pregnancy(ies). Eligible participants may complete this survey regardless of the outcome of the pregnancy(ies) (i.e. stillbirth, miscarriage, or termination).
The research will be conducted in two phases.
1: Online Survey – to gather information about Lyme disease in pregnancy
2: Online Focus groups - for those who have been diagnosed or suspected to have Lyme disease during pregnancy, they will be asked questions about areas of research they deem priorities and asked to indicate their interest in being contacted about participating in an online focus group to discuss future research priorities for Lyme disease and willingness to participate in Lyme disease research.
LymeMIND Conference and LymeX
We are thankful for the Cohen Foundation as they continue to lead with generous philanthropy for Lyme disease research, innovation and collaboration. For the last two years, I have been honoured to represent LymeHope as a panelist in their LymeMIND conference, speaking directly to the issue of maternal-fetal transmission of Lyme, and alongside other experts, bringing this important, understudied alternate mode of transmission back into the forefront of academia and government.
This year, due to COVID, the conference was shared via an online platform - enabling access to many all over the world! I have learned so much from other panelists, presentations and scientists and I'm excited by the energy, enthusiasm, momentum and shared desire to make things better for Lyme sufferers. This collaborative conference values and prioritizes the bringing together of scientific and medical expertise alongside patients and advocacy leaders - and is a beacon of Hope for the Lyme community all over the world. At this conference, an exciting announcement was made of 'LymeX' - the largest Lyme public/private partnership in history to 'strategically advance Lyme and tickborne disease solutions in direct collaboration with Lyme patients, patient advocates, and diverse stakeholders across academia, nonprofits, industry and government.' What a huge and important achievement!
LymeMIND 2020 'Mothers and Children' Panel
CanLyme Podcast Series and Educator Resources
New Canadian resources were launched in 2020 by CanLyme with new PodCast Series 'Looking at Lyme' with host Sarah Cormode - featuring a fantastic lineup of experts in their first season including prominent Canadian leaders in Lyme disease including: Dr. Ralph Hawkins (Internal medicine clinician), Dr. Melanie Wills (Scientist and Director of the G. Magnotta Lab at the University of Guelph), Elizabeth May (MP Green Party), Dr. Liz Zubek (family physician and Lyme expert) and Janet Sperling (Entomologist).
CanLyme has also initiated the Lyme Education Awareness and Prevention program (LEAP) and has developed an educators resource and are seeking educators who are willing to pilot and provide feedback through two virtual focus groups.
Recent Published Canadian Research Papers
Ally Rogerson and Canadian Lyme researcher Dr. Vett Lloyd authored a paper 'Lyme Disease Patient Outcomes and Experiences; A retrospective Cohort Study. 'In this study, patient outcomes were evaluated from a cohort of 210 Canadian Lyme disease patients seeking treatment at one US Lyme disease clinic following a treatment regimen conforming to the ILADS treatment guidelines. It was found that the majority of Lyme disease patients at the clinic responded positively to treatment and a significant (p < 0.05) decrease in symptoms was observed over time.'
A 2019 paper by Emilie Gaudet, Dr. Odette Gould and Dr. Vett Lloyd titled 'Parenting When Children Have Lyme Disease: Fear, Frustration, Advocacy is specific to children and families affected by Lyme. This paper is a qualitative analysis of written correspondence produced by 23 parents of children and adolescents with Lyme disease. This paper is an excellent, eye-opening resource highlighting the hurdles Canadian families face accessing the care they need for their children.
Scientists from the G. Magnotta Lab including Dr. Melanie Wills also published two papers in 2020 including a review article. 'Lyme Disease Frontiers: Reconciling Borrelia Biology and Clinical Conundrums' and a second paper 'The Platelet Fraction Is a Novel Reservoir to Detect Lyme Borrelia in Blood.'
CTV W5 Episode 'Bitten' on Lyme disease
New Book Launch 'Chronic' in Feb 2021
In February 2021, a brand new book 'Chronic' will be available for purchase! Written by leading Lyme clinician Dr. Steve Phillips and singer/songwriter/writer Dana Parish, this book is set to be a best-seller!
On their FB page, Dr. Phillips writes this:
'If you've ever wondered why I take the injustice of chronic illness so personally, that answer is twofold:
1. I care deeply about my patients.
2. I've had my own personal story, which I've revealed in detail in the book for the first time publicly. It was terrifying and cathartic to share something so painful, but it's also a story of triumph.
'Chronic' is being released in just a few weeks!
Dana and I feel so privileged to have had our dear friend Dr. Neil Spector write the foreword, which takes on even more meaning now.
We were in the unique position of having written a book about the chronic illness pandemic, in the midst of the worst pandemic in 100 years. Our publisher wisely delayed the release of our book so we could include a chapter on Covid. And just like with Lyme+, we don't pull any punches.
Nature's not fickle. Chronic infections can cause chronic inflammation and disease. A huge array of chronic, autoimmune, and psychiatric illnesses have their roots in infection.
A paradigm-shift in how doctors approach chronic illness is decades overdue. Lifelong-palliation of symptoms is not an answer. Treat the cause.'
New Year, New Hope
As we welcome in the New Year, 2021, I'm sharing a very special piece of artwork which was painted for me upon commission, by an extraordinarily accomplished BC artist, Eryn Goodman who has also been impacted by Lyme. This stunning painting has a place of honour above my desk in my office, along with another beautiful painting 'There is Always Hope' gifted to me in 2019 by a dear friend and amazing Lyme advocate Jennifer Wheeler. Both masterpieces serve as regular reminders of Hope - even in the midst of suffering, loss, uncertainty and despair.
The title of this painting is 'The Night will Bend'. The painting depicts stormy, icy seas of ignorance and uncertainty, opaque vicious storm clouds - which indeed sets the current stage which Lyme sufferers throughout Canada have endured for decades. The lighthouses stands tall, resolute, unmoving and strong - it's warm beacon of Hope illuminating a bright guiding light which cuts through the vast darkness - it depicts the brave actions and advocacy of many, adults and children alike, who share their stories and speak truth to power to give voice and validation of those who suffer.
However, what is so important, and what I asked the artist to depict, was the birth of the sunrise in the horizon - bright twinkling light pushing back the dark clouds and even reflecting on the stormy waves below. The never-ending night of sorrow and despair WILL bend to the Light that is breaking through.
For me, the horizon of Hope depicts the coming together of government, academia, scientists/researchers, patients and caregivers with a determination to work cohesively and collectively together to address the issues of those who suffer. It's a big task and at times seems impossible - however, I trust and believe that break-throughs are ahead. Perhaps 2021, despite continued COVID uncertainty, will mark the advent of the Sunrise.
Sue Faber, RN BScN
Co-Founder and President, LymeHope