Having a child with a complex illness can be especially challenging for parents because of differing opinions among providers about causes, symptoms and treatments for disorders such as long COVID and chronic Lyme. “A common theme I would hear from parents is that they really had to push their providers to consider Lyme. Sometimes they even had to beg for testing to be done because it just wasn't considered a possibility,” says Dr. Charlotte Mao, a pediatric infectious disease physician working with leading foundations in the Lyme disease and associated infections arena. Adding to challenge is that kids often have trouble explaining their symptoms, says Dr. Lael Yonker, a pediatric pulmonologist at Massachusetts General Hospital. “I think takes a lot of patience by the pediatrician, listening carefully to the parents and patient, and really trying to dig into what their symptoms actually mean.” Join host Raven Baxter of The Cohen Center for Recovery from Complex Chronic Illnesses at Mount Sinai as she draws out valuable guidance on how providers can work effectively with both children and parents during a journey laden with uncertainty. Key tips include having humility for the limits of your own knowledge, keeping an open mind for unexpected possibilities and having respect for what patients know about their own body. Don’t miss this wisdom drop from these deeply experienced pediatricians and researchers as our series on Post-Acute Infection Syndromes continues.

Mentioned in this episode:

Mount Sinai Health System

Steven & Alexandra Cohen Foundation

“Helping patients with complex illnesses is a lot like rock climbing. You're looking for toe holds and finger grips that you can use to get from where you are to where this patient wants to be,” says Dr. Leo Galland, an internist and author who specializes in undiagnosed or difficult to treat illnesses. His fellow guest on this episode of Raise the Line, co-founder of the California Center for Functional Medicine Dr. Sunjya Schweig, agrees and says figuring out that next anchor point depends on taking the time to learn about all aspects of a patient’s life and lifestyle, and building a cooperative relationship with them. “Listening is the first therapeutic step,” he tells host Raven Baxter of The Cohen Center for Recovery from Complex Chronic Illnesses (CoRE) at Mount Sinai. In this deeply informative conversation, both experts underscore that working in this realm requires moving past differential diagnosis and symptom management and persisting in the search for root causes. “You have to embrace the complexity and the individuality of illness. Thinking for yourself and always questioning is really important and, you know, being a real pain in the butt kind of person is what you've got to be,” adds Galland. This special episode is packed with valuable insights on the limits of testing, the role of disease triggers and mediators, the power of lifestyle changes and much more as our series on Post-Acute Infection Syndromes continues.

Mentioned in this episode:

Mount Sinai Health System

Steven & Alexandra Cohen Foundation

One key theme in this episode of Raise the Line is that attention to details matters for both patients with post-acute infection syndromes and the clinicians helping them as they grapple with often debilitating symptoms caused by dysautonomia, cardiac complications and other disorders. For patients, it’s about paying close attention to their bodies and diet, and being intentional about their use of energy. For providers, it’s listening very carefully to patients as they describe their fatigue, pain, lightheadedness and other symptoms and keeping up with the latest research on treatments so there are options to offer if there’s little or no progress being made in physical therapy, which is sometimes the case. “Don't just assume therapy is gonna go smooth. It rarely goes smooth. So, have an answer for the patient who says, ‘I'm not feeling better, what should I try next,’” says Dr. David Putrino, director of the Cohen Center for Recovery from Complex Chronic Illnesses (CoRE) at Mount Sinai. It’s also important to set expectations for patients who may think a few weeks of PT will resolve their issues, as is often the case with recovery from an injury. “What we're looking to do is reduce the number of flare-ups that happen, reduce the severity of those flare-ups, and ideally reach a point of symptom stability,” says Dr. Jenna Tosto, a leading expert in neurophysiological rehabilitation at Mount Sinai. To help patients understand the amount of progress happening, if any, host Dr. Raven Baxter, a long COVID patient herself, says keeping a daily journal and using fitness trackers can reveal important details. This expansive conversation includes valuable insights for patients and providers alike on breathwork, emotional regulation and other techniques to try during the search for improvement and recovery in complex chronic illnesses.

Mentioned in this episode:

Mount Sinai Health System

Steven & Alexandra Cohen Foundation

We continue our Year of the Zebra focus on rare diseases today by exploring the ability of AI technology to aid in the diagnosis of rare and other conditions by analyzing the voice and speech of the patient. This approach is promising enough that the National Institutes of Health has invested in research projects to test its effectiveness, and the private sector is pursuing it as well, including the company Canary Speech whose technology can be trained to detect conditions that are traditionally difficult to identify, or those where early identification is crucial to treatment. “With just seconds of conversational speech, we can screen for multiple behavioral and cognitive conditions,” says Caitlyn Brooksby, Canary's vice president of Marketing and Strategic Partnership. One prime example she offers is a study on Huntington’s disease done in collaboration with Beth Israel Deaconess Medical Center in which more than a thousand features of speech were identified differentiating healthy patients from those with the disease. “Every ten seconds, we're looking at millions of data points, but we don't look at the words you say. We're looking at biomarkers within speech such as duration per word, word-per-second, bandwidth and contrast. It's really incredible what we can gather from speech alone,” she explains. Canary is in the second iteration of its Huntington’s model which is showing accuracy rates of 90% and above, and it recently added mild cognitive impairment, Alzheimer's, and Parkinson's disease to its offerings. Join host Lindsey Smith on this episode of Raise the Line to learn more about this promising approach to diagnosis.

Mentioned in this episode:
Canary Speech

Exercise is good for you, except in very specific cases when it isn’t. One of the few examples, post-exertional malaise (PEM), is the subject of today’s Raise the Line episode in our series on post-acute infection syndromes produced in collaboration with the Cohen Center for Recovery from Complex Chronic Illnesses at Mt. Sinai. “The key to understanding PEM is that it's not just fatigue. It's really the worsening of symptoms or the onset of new symptoms after exercise,” says Dr. Rob Wust of Vrije University Amsterdam. His research group is one of several around the world now focused on this previously obscure phenomenon due to the prevalence of long COVID in which PEM is a nearly universal symptom. And while it’s good news that this debilitating affliction is receiving new attention, no clear picture of causes and treatments has yet emerged. In terms of suspects, the body’s energy suppliers, mitochondria, are a popular target, but while Wust’s team and others attempt to unravel the mysteries of mitochondrial dysfunction, millions of patients suffering with PEM need strategies to avoid exhaustion. In that regard, Dr. David Putrino of the Cohen Center says patients and clinicians alike need to take all use of bodily energy into account, not just obvious activities such as walking. “The brain uses a lot of energy, so cognitive exertion will cause crashes. Emotional exertion will cause crashes and so will digestion and even sweating.” Join host Raven Baxter of the Cohen Center as she explores what can be done for patients as the race to find better diagnostics and treatments for PEM continues in some of the world’s top scientific centers.

Mentioned in this episode:

Mount Sinai Health System

Steven & Alexandra Cohen Foundation

Long COVID Physio

It’s hard for many to believe a tick bite or case of COVID can lead to severe mental illness, but we’ll be hearing from someone on this episode of Raise the Line who lived through just that experience. Dr. Raven Baxter also happens to be the host of this special series on post-acute infection syndromes produced in collaboration with the Cohen Center for Recovery from Complex Chronic Illnesses at Mt. Sinai. While struggling with long COVID, Raven developed panic attacks and other mental health problems, and even though she explained to providers that she previously had no history of mental illness, there was reluctance to attribute the symptoms to her body’s reaction to SARS‑CoV‑2. Unfortunately, this is not surprising to Dr. Shannon Delaney, a psychiatrist whose patients share similar stories. “People who are going through this can be suffering a lot, not only because of their symptoms, but because of invalidation from the medical community,” says Delaney, who believes brain inflammation caused by immune system dysregulation can explain why mental health issues emerge in this context. While Raven’s other guest, Dr. Mike VanElzakker, concurs, his research at Massachusetts General Hospital and the PolyBio Research Foundation focuses on the vagus nerve as a contributing factor to symptoms of various types. “I would argue at least part of what people with these complex chronic illnesses are experiencing is an ongoing sickness response and that may be because there is a signal that's constantly bombarding the vagus nerve, which may be sensitized by inflammation.” This is an eye-opening look at mind-body connections that are challenging conventional wisdom.

Mentioned in this episode:

Mount Sinai Health System

Steven & Alexandra Cohen Foundation

“I think education is very much of an artistic process. I love to think of this as kind of being in a museum. It's about curation of an experience,” says Alex Kendall who oversees the physician assistant training program at Emory University. As he takes on the role of director, Kendall’s background in art and anthropology give him an interesting perspective from which to build on and realize the program’s vision and mission, which are rooted in evidence-based education, leadership development, interprofessional education and creating patient-centered, community-oriented clinicians. Toward that end, one curated experience is participation in the longstanding Emory Farm Worker project in which students care for thousands of migrant workers from Florida, Georgia and other states. Among other things, it’s a great opportunity to deepen awareness of the social determinants of health and practice caring for diverse populations. Looking to the future, Kendall and colleagues are keen to prepare their students for growing trends that will impact their work as clinicians including team-based care, the aging of the population and the increase in climate-related health problems. “We ask ourselves what does the future of health and society look like in ten years and what is needed from physician assistants? Our job is to identify what medical education then needs to look like in order to meet those future challenges.” This expansive conversation with host Hillary Acer also touches on Emory’s cognitive apprenticeship curriculum, scaffolded learning, making primary care an easier choice of specialty and the growing interest in point of care ultrasound.

Mentioned in this episode:

Emory University School of Medicine PA Program

Emory Farm Worker Project

Why do patients with long COVID have such a wide array of symptoms affecting so many bodily systems? That bedeviling question is the focus of this episode of Raise the Line featuring Dr. Resia Pretorius, head of the Department of Physiological Sciences at Stellenbosch University in South Africa and a renowned researcher in coagulation. “The underlying concept of what is happening, in our minds, is that long COVID is a widespread vascular endotheliitis, which is driven by the presence of all sorts of inflammatory molecules in circulation,” she tells host Dr. Raven Baxter of the Cohen Center for Recovery from Complex Chronic Illnesses (CoRE). Because endothelial cells line blood vessels that travel to every part of the body, their impairment produces a range of symptoms. Dr. Pretorius and her research colleagues have discovered that “microclots” – abnormal proteins that prevent clots from breaking down – are another ingredient in the long COVID recipe due to their possible role in reducing oxygen flow to the brain and other organs. Because of their unusual structure, microclots are not detected by customary blood tests, leading Dr. Pretorius to add her voice to the chorus of stakeholders calling for the development of new diagnostic tests and additional treatments. “We need a concerted effort for trials. We need FDA approval for the laboratory test that we developed. I’m confident we will get it done, but it will take time, which is sad.” Tune in to learn about the possible causes of microclots, promising research on anticoagulation therapy and why long COVID is not a “checklist” disease, as our special series on post-acute infection syndromes continues.

Mentioned in this episode:

Mount Sinai Health System

Steven & Alexandra Cohen Foundation