Make Visible: Understanding Complex Illness

• #8. Exploring the drivers of post-infectious illness, with Harvard Neuroimmunologist Michael VanElzakker, PhD

  Dr. Michael VanElzakker’s mission is to identify the individual drivers of post-viral illnesses. “How do you find something when you don’t know what you’re looking for?” he asks, believing that COVID-19, whilst a disaster for humanity, is giving us the opportunity to establish practises to identify those unknowns and establish more unbiased research methodologies. Whilst ME/CFS encompasses huge numbers of people who have a shared end point in their symptom sets, VanElzakker believes that we need to seize this moment of Long Covid - where we know what the pathogenic driver is - to develop our understanding and testing across these post-infectious conditions. The juncture of the brain and the immune systems is the focus of VanElzakker’s work where he studies the drivers of chronic disease. Assistant Professor at Harvard Medical School, Massachusets General Hospital , and instructor at Tufts University, VanElzakker is a researcher, educator and patient advocate, taking a holistic approach to the science of his field. Until 2020, VanElzakker focused his research on PTSD and ME/CFS, studying the interplay between the immune and nervous systems in these conditions. Drawing on this expertise in post-viral illnesses and the long-term effects of immune and nervous system dysregulation—whether triggered by a single event or persistent stimulation—he co-founded The PolyBio Research Foundation with the brilliant Amy Proal. Together, they have established a cutting-edge research initiative that brings together top scientists to develop a deeper, more cohesive understanding of these complex diseases. In this episode VanElzakker shares insights into his research and the challenges surrounding chronic illness healthcare. He points to the need for improved testing protocols in ME/CFS to enable patients to rule out or identify underlying triggers for symptoms which have the potential to be addressed. He explains the differences that he has seen between the conditions of pre-Covid ME/CFS and the chronic consequences of COVID-19 in Long Covid patients. And he highlights PolyBio’s strategy of using the impetus and funding that has been brought to the fore to grapple with the millions of people suffering from Post-Covid conditions, to gain deeper understanding of post-viral conditions at large with the intention of moving other post-viral patients, from ME/CFS to post-Lyme, into studies as soon as is viable.

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• #7. Discovering new treatments for Brain Fog with Yale M.D. Arman Fesharaki-Zadeh

  Arman Fesharaki-Zadeh is a behavioural neurologist and a neuropscychiatrist whose primary focus has been treating patients with cognitive deficits – from Alzheimer’s to Traumatic Brain Injury (TBI).  Since 2020 a considerable portion of his clinic at Yale Medicine have been Long Covid patients and he noticed similarities in symptoms with post-concussive syndrome and other neuroinflammatory conditions.   Working with Professor Amy Arnsten (and referenced in our previous episode), Dr Fesharaki-Zadeh has developed a treatment regimen using Guanfacine and N-acetylcysteine that he found to be effective in improving prefrontal cortical function in TBI.  Taking their knowledge from these patients and applying it to the treatment of the brain fog experienced by Long Covid patients, Fesharaki-Zadeh started using the same protocol and anecdotally it has had considerable impact in improving cognitive symptoms, emotional regulation, and even sleep.   Dr Fesharaki-Zadeh is pursing more empirical evidence, pushing for clinical trials to look at this treatment protocol.  His rationale for the treatment of cognitive deficits in Long Covid seems sensible and his proposed strategy is proven safe.   This conversation discusses the need for validating patients’ experiences by providing physiological understanding of their symptoms, the importance of expanding access to effective treatments for Long Covid and other conditions, and emphasizes the dynamic and interactive nature of the brain and the importance of considering it as part of the whole network rather than an isolated entity.

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• #6. The Science of Stress: Exploring Brain Function, Inflammation, and Cognitive Health with Yale Prof. Amy Arnsten

  Amy Arnsten, PhD, is a Professor of both Neuroscience and Psychology at Yale University, where she runs her own lab which studies and teaches about the brain’s higher cortical circuits and their molecular regulation. In this week’s episode we discuss Prof. Arnsten’s recent paper published in Biological Psychiatry looking at the impact of stress (both physical and mental) and inflammation on the prefrontal cortex, an area of the brain with implications in a range of conditions from depression and schizophrenia, to Alzheimer's and Long Covid. Arnsten explains how she and her lab are able to observe the biological changes that take place in the brain when under chronic stress, or triggered by inflammation, which can lead to a primitive survival response: shutting down higher cognitive functions.  This area of the brain is responsible for the regulation of our emotions, our mood and our behaviour.  Changes in this region lead to the brain fog, memory issues and emotional dysregulation that is prevalent in these disorders. And she talks us through the pathway of kynurenic acid production, levels of which are elevated in conditions such as Long Covid which inhibits neurotransmission.  The understanding of this could lead to break-throughs in our diagnosis and treatment of such conditions.  And Prof. Arnsten is already seeing promising potential with guanfacine, a compound that her lab developed for the treatment of ADHD (approved by the FDA in 2009).  A combination of guanfacine, which strengthens connections in the prefrontal cortex, with the anti-inflammatory, antioxidant supplement NAC (N-acetyl cysteine) seems to show possible beneficial applications in Long Covid.

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• #5. How our understanding of ME/CFS, fatigue and pain has progressed over the past decade with Lucinda Bateman M.D.

  Lucinda Bateman, M.D. has been seeing patients, learning about, and educating about ME/CFS and fibromyalgia for decades. She is Chief Medical Officer of the Bateman Horne Center, Salt Lake City, whose mission is “improving access to informed health care for individuals with ME/CFS, Long COVID, and fibromyalgia by translating clinical expertise into medical education and research initiatives”. Dr. Bateman was one of the researchers responsible for the National Academy of Medicine’s 2015 report on ME/CFS, a seminal paper that helped define the diagnostic criteria for ME / CFS.  Since then she has authored innumerable papers, working with the CDC alongside many of the stalwarts of the chronic illness medical community as part of the longitudinal multi-centre (MCAM) research that has looked at the impact, treatment protocols and drivers of ME/CFS. A member of the ME/CFS Clinican Coalition, she is dedicated to advancing understanding of these chronic conditions and improving care and outcomes for patients.  Her work has found many benefits from treating co-morbidities in chronic illness, such as POTS, with her most recent publication addressing chronic overlapping pain conditions, including fibromyaligia, that are regularly found alongside ME/CFS. And since the inception of Long Covid her work has pivoted to include this new heterogenious group of post-infection patients.  Much of her recent work has been looking at the parallels and differences between these illnesses and applying her historic knowledge to this new disease: she is one of the ME/CFS and Long Covid specialists working with the NIH on the RECOVER program. And her deep understanding of post- exertional malaise once again highlights the importance of pacing across these conditions Her work over the decades has been tireless to developing understanding of, and treatment paradigms for, chronic post-infectious syndromes.

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• #4. Balancing the autonomic nervous system with Dr Boon Lim (Part 2)

  In this week’s episode renowned cardiologist Dr. Boon Lim returns for Part 2 of the conversation with Emily Kate Stephens, presenting three clarifying analogies to represent a wider view of the impact of acute stress on the autonomic nervous system, and its role in complex chronic illness. Dr. Boon Lim uses the poem The Blind Man and the Elephant to exemplify the need for us and our medical practioners to approach chronic illness by looking at the body and mind as a whole rather than individual parts.  He describes the body affected by Long Covid as a factory for which we need to find the off-switch.  And he sets out the image of a gazelle in long grass: constantly on high alert anticipating attack, as a way for us to understand the way in which our bodies have been pushed into chronic stress. Dr Lim explains the way in which returning to homeostasis requires balancing of our sympathetic and parasympathetic systems and the consequences of imbalance.  He calls for us to consider the idea of stress reduction for alleviating some of the negative consequences of post-viral illness and we discuss the power of the breath, mindfulness and acceptance, not simply as a way to calm the mind, but to influence the entire body and nervous system. Dr Lim is able to demonstrate the scientific basis for what some might consider to be more esoteric ideas, discussing the ENO’s Breathe Programme, which carried out one of the first RCTs performed in Long Covid, alongside the way in which HRV monitoring can show the changes driven by such strategies.  Despite his heavily medical credentials, Dr Lim endeavours to grasp the mental and emotional aspects of chronic illness, whilst highlighting the importance of collaboration between patients and healthcare providers to achieve progress. The books discussed in this episode were: Johann Hari's -  "Stolen Focus: Why You Can't Pay Attention" James Nestor's - "Breath: The New Science of a Lost Art" Make Visible @visible_health @visible.health

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