Make Visible: Understanding Complex Illness

#16 Why are women more susceptible to complex illness? Predicting chronic conditions with Michal Caspi Tal PhD

This week’s episode takes us on an exploration of the exciting work coming out of M.I.T’s Biological Engineering teams into understanding infection-associated illnesses and the emerging field of menstruation science.
Emily Kate Stephens is joined by Dr Michal Caspi Tal, Principal Scientist of the Tal Research Group and Associate Scientific Director at the Center for Gynepathology Research. She is responsible for innovative research seeking answers about the the overlap between infection, immune dysregulation, and chronic illness; alongside working to break menstrual taboos, creating a scientific framework for understanding the implications of the female reproductive system on our health and our sickness
Her lab has launched MIT MAESTRO study, a groundbreaking research initiative using leading edge technology, aimed at uncovering the links between infection-associated illness, immune dysregulation and mitochondrial dysfunction, juxtaposing Long Covid against acute and Chronic Lyme. The team study the way in which pathogens interact with the immune system, genetics, and each other to create overlaps with POTS, MCAS, gynaecological conditions and connective tissue disorders such as hEDS.
The Tal Research Group is working to bridge engineering and biology to fill critical research gaps— particularly around chronic illnesses such as endometriosis, acute and chronic Lyme disease, Long Covid & ME/CFS. Their work is developing predictive diagnostics and illness trajectory maps to help us understand who is at risk of developing infection-associated chronic conditions, and why.
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#15 Monoclonal Antibodies and the Future of Complex Illness Treatment with Dr Nancy Klimas

A new clinical trial is underway to test a monoclonal antibody as a treatment for Long Covid.
In this week’s episode Emily Kate Stephens sits down with Dr Nancy Klimas at Nova Southeastern University (NSU), Florida, to discuss the trial alongside the groundbreaking research and integrative care, that is taking place at the Institute for Neuro-Immune Medicine, looking at Long Covid, ME/CFS and other complex conditions.
The trial, a collaboration between Nova Southeastern University and the Schmidt Initiative for Long Covid, will use an AstraZeneca drug, which is already approved for COVID-19 prevention in those with compromised immunity, on 100 patients in a double-blind, randomised controlled trail. And Dr Klimas, a globally recognized expert in immunology and chronic illness, believes that this has the potential to be a curative treatment for the disease in around 40% of patients.
Alongside this new study, we discuss the role of computational modelling and the progress that AI is having in uncovering hidden patterns in chronic disease; the way in which gender differences shape inflammatory responses and treatment strategies; and the critical importance of restorative sleep, nutrition, and anti-inflammatory approaches in improving the lives of patients.
We discuss some of the other studies in which the INIM are involved – the Reboot Study, Microbiome research, probiotics, and the COVIDUP study, along with the power of international collaboration, the challenges of funding and the amazing contribution of patients.
Dr. Nancy Klimas is Director of the Institute for Neuro-Immune Medicine at NSU, and a leading voice in translational research focused on chronic illness, ME/CFS, Gulf War Syndrome, and Long Covid. With decades of experience in immunology and clinical science, Dr. Klimas is a champion for an integrative, personalized approach to patient care.
 
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#14 Can wearables predict symptom flare-ups? Using biometrics to manage complex illness with David Putrino Dr. David Putrino

Data gathered from wearable technology can warn of impending symptom exacerbation in complex chronic illness a new study has found.
In this week’s episode Dr. David Putrino discusses the findings.  He, in collaboration with leading immunologists, microbiologists and data scientists, tracked data points from 5000 Visible app users (who enrolled in the study) to establish that HRV and resting heart rate can be used to predict a crash.  Analyzing more than 55,000 readings over 1000 days they were able to see changes in the autonomic nervous system of contributors using this biometric data.  The largest study of its kind, these findings have the potential to provide the basis for individualised care strategies for this enormous cohort of patients.
Here we discuss the function and dysfunction of the autonomic nervous system.  Dr. Putrino gives us an overview of heart rate variability, the way in which it fluctuates, what its readings can determine about our health and ways in which these can be influenced. We talk through the power of breathwork including two of Dr Putrino’s studies – on resonant breathing and hypocapnia – showing the way in which breathing impacts our physiology but determining that we have innate power to influence our health.
As Director of Rehabilitation Innovation Mount Sinai Health, Dr. Putrino‘s focus is on real-world solutions for this patient cohort. In a world where new drug approval takes 10 years and technologies in this field can take 17 years to reach market, his aim is to bring patients tangible treatments and protocols in a practical timeframe. Currently involved in clinical trials for rapamycin and vagal nerve stimulation, Dr. Putrino endeavours to re-purpose drugs and technologies that are already approved in other situations to create personalised strategies for this engaged cohort.
 
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#13 The role of Mast Cells in complex illness: what they are and how to calm them with Dr. Theoharis Theoharides

Dr. Theoharis Theoharides ‘The Mast Cell Master’ has been at the forefront of mast cell research for over 30 years. A renowned expert in allergy, neuroinflammation, and mast cell biology, his work centers on understanding the regulation of these critical immune cells. His extensive studies explore their fundamental role in the body, the mechanisms behind their activation and inhibition, and their involvement in a wide range of conditions—from asthma and eczema to neuroinflammatory disorders and complex chronic illnesses.
In this week’s episode, we delve into the role of mast cells in complex chronic disease. Dr. Theoharides explains how mast cells are distributed throughout the body, the various stressors that can activate them, and how their activation may contribute to overlapping symptoms seen in conditions such as migraines and irritable bowel syndrome. The comparisons draw into question whether a degree of mast cell activation is co-morbid in many of these conditions, or indeed whether some of these conditions are a symptom of mast cell activation.
He underscores the urgent need for better diagnostic tools, greater awareness within the medical community, and a broader, more integrative treatment strategy. This includes lifestyle interventions and the use of natural flavonoids, which have been proven to inhibit mast cell activity. Dr. Theoharides also discusses the ongoing challenges in securing research funding and the potential for integrative approaches to address complex conditions – thinking outside the box to treat patients individually, listening to their needs and treating accordingly – which is what he believes they are able to do with his team at NSU
Dr. Theoharides is Executive Director, Center of Excellence for Neuroinflammation Research (CENIR) & Professor, Institute for Neuro-Immune Medicine at Nova Southeastern University.  Prior to this he spent four decades at Tufts University where he was Director of Molecular Immunopharmacology & Drug Discovery.

#12 "Chronic Overlapping Pain Conditions" in ME/CFS, new insights with the C.D.C’s Dr Elizabeth Unger, Yang Chen & Elizabeth Fall

The U.S.A.’s Centre for Disease Control (C.D.C) ME/CFS program has been working for decades to deepen our understanding of the condition. Their Multi-site Clinical Assessment of ME/CFS (MCAM) study, conducted across seven specialized clinics in the U.S. from 2012 to 2020, provides valuable data that forms the foundation for ongoing research. 
Dr Elizabeth Unger, chief of Chronic Viral Diseases Branch, and epidemiologists Yang Chen and Elizabeth Fall, have contributed to numerous studies exploring various aspects of ME/CFS, from cognitive impacts to looking for biomarkers. In this episode, we focus on their latest paper, which examines the prevalence of Chronic Overlapping Pain Conditions (COPCs) that occur in ME/CFS.
Three-quarters of ME/CFS patients suffer from COPCs (defined as: Chronic low back pain; Chronic migraine/Headache; Fibromyaligia; Endometriosis; Interstitial cystitis/Irritable bladder; Irritable bowel syndrome (IBS); Temporomandibular disorder (TMD); Vulvodynia) with women being more likely to experience at least one of these co-occurring conditions.  The understanding of why these are so prevalent in ME/CFS is the next piece of the puzzle.
A large portion of this team’s work is educating patients and carers along with healthcare workers.  They are immensely proud of their resources such as their patient tool kit, management strategies and disability advice, tailored to helping patients advocate for themselves and their family members to receive appropriate diagnosis, treatment and care.  Sitting alongside this is a section for healthcare providers where they present a clinical overview to assist in the diagnosis and care, with a toolkit containing many educational and reference resources.
The MCAM data and biospecimens are also available (via application) to other investigators to maximise the impact of this longitudinal study.
 
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#11 Post-Pandemic prevalence of ME/CFS - what we can learn from the increase with Suzanne Vernon, PhD

In her latest paper Suzanne Vernon, PhD, Scientific Director at the Bateman Horne Center, reveals that ME/CFS prevalence is now 15 times higher than pre-pandemic estimates.
The study, carried out by the RECOVER initiative, and published in the Journal of General Internal Medicine confirmed that ME/CFS has a 4.5% prevalence among those who did not recover from COVID-19, and forms the most severe subtype of Long Covid.  Whilst not all Long Covid patients will fulfil the criteria for ME/CFS, the ability to study the conditions in parallel and at the point at which they cross over is bringing us unprecedented insights into long term energy-limiting conditions.
 
In this week’s interview Dr Vernon highlights the challenges in identifying definitive biomarkers for ME/CFS due to its heterogeneity and the fact that there are multiple triggers, but explains how the longitudinal data gathered in the RECOVER study is making roads into understanding the pathogenesis and necessary treatments for ME/CFS.  This is due to one crucial factor: here we are presented with a huge group of ME/CFS patients who have developed the illness from one trigger, SARS-COV2.
Whilst the findings are shocking, and the stark quantity of people with ME/CFS is rising dramatically, Dr Vernon is positive about the way in which we can optimize this moment in time, with the research attention and funding in place, to reveal what is causing ME/CFS and then go on to work out how it can be treated.
Dr Vernon has more than 30 years’ experience in researching chronic illnesses, authoring hundreds of papers on the subject, working with the government and non-profits to move the needle in this research arena.  She is dedicated to understanding what drives conditions such as ME/CFS, whilst advocating for greater involvement amongst the scientific and medical communities.  Formerly the Scientific Director at  Solve ME/CFS Initiative, Dr Vernon is tireless in her bid to advance research, educate and improve care for those impacted by ME/CFS.
Additional references from the episode:
JAMA paper detailing clusters in Long Covid
 
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#10 Staying connected (Part 2): Dealing with isolation and limitations in complex illness with Suzy Bolt

When Suzy Bolt developed Long Covid in 2020 she searched for ways to understand her condition and began to create an online community of like-minded people traversing similar health situations. From her dark bedroom she found many others looking for answers, validation and ideas to help them navigate their illnesses, and from this she started to develop her holistic program.
Drawing on her background in counselling, yoga and neuro-linguistic programming - alongside her own experience of illness - Suzy launched an online platform in September 2020 to help people with post-viral and energy-limiting conditions. Her Rest, Repair, Recover program provides a space for support, community, and a deeper understanding of the nervous system.
The program brings together practitioners with lived experience of these conditions, offering an interactive framework of movement, breathwork, creativity, and rest - all aimed at regulating the autonomic nervous system.
In this two-part conversation, Bolt explores the cascade effect of small, positive changes—finding joy, building community, and practicing self-compassion—and how these shifts can influence the nervous system, immune function, and overall well-being.
In this, the second part of the conversation, we discuss the kindness, creativity and distraction from symptoms; along with nutrition, celebrating progress and the effect that these programmes have had on people’s lives.
Over the past five years Suzy Bolt has become a mainstay for those looking to improve their condition through a holistic approach. In a recent survey of those who have attended her programmes, the majority said that it improved their overall energy levels, improved their mood, alleviated some of their medical concerns and gave people confidence to manage their symptoms. She is regularly consulted and recommended by the NHS as an additional strand to medical help that people may be being offered.
Her approach endeavours to address autonomic dysfunction as a way to create optimum environment in which people can start to feel improvements in their health.
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#9 Staying connected (Part 1): Dealing with isolation and limitations in complex illness with Suzy Bolt

When Suzy Bolt developed Long Covid in 2020 she searched for ways to understand her condition and began to create an online community of like-minded people traversing similar health situations. From her dark bedroom she found many others looking for answers, validation and ideas to help them navigate their illnesses, and from this she started to develop her holistic program.
Drawing on her background in counselling, yoga and neuro-linguistic programming - alongside her own experience of illness - Suzy launched an online platform in September 2020 to help people with post-viral and energy-limiting conditions. Her Rest, Repair, Recover program provides a space for support, community, and a deeper understanding of the nervous system.
The program brings together practitioners with lived experience of these conditions, offering an interactive framework of movement, breathwork, creativity, and rest - all aimed at regulating the autonomic nervous system.
In this two-part conversation, Bolt explores the cascade effect of small, positive changes—finding joy, building community, and practicing self-compassion—and how these shifts can influence the nervous system, immune function, and overall well-being.
In this, the first part of the conversation, we discuss the impact of isolation and power of community; we delve into Bolt’s journey and discuss the way in which our histories and genetic make up play into these conditions; and we delve into the divisive topic of exercise.
Over the past five years Suzy Bolt has become a mainstay for those looking to improve their condition through a holistic approach. In a recent survey of those who have attended her programmes, the majority said that it improved their overall energy levels, improved their mood, alleviated some of their medical concerns and gave people confidence to manage their symptoms. She is regularly consulted and recommended by the NHS as an additional strand to medical help that people may be being offered.
Her approach endeavours to address autonomic dysfunction as a way to create optimum environment in which people can start to feel improvements in their health.
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#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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