Make Visible: ME/CFS, Long Covid, POTS, EDS, Fibro & MCAS Explored – Détails, épisodes et analyse

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Make Visible: ME/CFS, Long Covid, POTS, EDS, Fibro & MCAS Explored

Visible with Emily Kate Stephens

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Fréquence : 1 épisode/17j. Total Éps: 41

Shining a light on invisible illness.

Emily Kate Stephens, journalist and Long Covid sufferer, discusses the latest research and insights with the world’s leading experts, scientists and healthcare professionals. Including ME/CFS, Long Covid, Ehlers Danlos (EDS), Fibromyalgia, POTS, Mast Cell Activation Syndrome (MCAS), Chronic Lyme, Infection Associated Chronic Conditions (IACCs) and more, we dive into the science of energy-limiting, chronic illness, whilst providing patients, caregivers and medical professionals with practical tools to diagnose, understand and manage their conditions.

From pacing to supplements, repurposed drugs to biomarkers, therapies to advocacy groups, we share the work that is being done for and by the community, helping patients navigate their symptoms, emotions and lives.

Join us every two weeks.

To find out more about the work that Visible is doing, using wearable technology to measure and manage complex chronic illness, visit our website at:

Make Visible

@visible.health

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#1 Patient Power: scientific and policy progress with Patient Led Research Collaborative (PLRC)

Saison 1 · Épisode 1

mercredi 18 septembre 2024 • Durée 40:46

The Patient-Led Research Collaborative (PLRC) are a group of patient researchers who aim to facilitate patient-led research into infection-associated chronic conditions. Since their inception they have published numerous papers and articles including a complete review of the Long Covid findings in January 2023 in Nature, an article on designing clinical trials in Life Sciences and on the impacts on female reproductive health in Frontiers. They have worked with the CDC, the NIH, the WHO, and collaborated with Yale, Imperial and UCL.

In this week’s interview with PLRC’s Hannah Davis and Lisa McCorkell we discuss their organisation’s achievements - the progress and impact of patient-led advocacy and research in Long Covid and related conditions. We discuss some of the many studies that they have funded including the patient-generated hypotheses journal that they launched in May 2023, and the Long Covid Moonshot project:

Long Covid Research Moonshot Act of 2024, which aims for $1 billion annual funding for research and treatment for the next 10 years, is a bill that has now been proposed to the U.S. government by Senator Bernie Sanders. “The legislation that we have introduced finally recognizes that long Covid is a public health emergency and provides an historic investment into research, development, and education,” Sanders said.

PLRC have been instrumental in the introduction of this legislation within the U.S. and, as they continue to try and change patient outcomes for the better globally, we discuss their international collaborations and what is still needed: better-informed public policy and medical education.

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Make Visible: Trailer

Saison 1

mercredi 11 septembre 2024 • Durée 02:17

Introducing Make Visible, the podcast shining a light on complex chronic illness.

Join us every two weeks as journalist Emily Kate Stephens uses her experience of living with an energy limiting condition to bring us the latest research and insights from the world’s leading experts, scientists and healthcare professionals. Including ME/CFS, Long Covid, EDS, Fibromyalgia, POTS, and more, we delve into the science of invisible illness.

makevisible.com

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#2 How heart rate and symptoms are connected with Cardiologist Dr Boon Lim

Saison 1 · Épisode 2

jeudi 3 octobre 2024 • Durée 45:09

Cardiologist Dr Boon Lim describes himself as an electrician of the heart. Extremely experienced in surgically repairing heart rhythms, he is also an expert in treating Postural Orthostatic Tachycardia Syndrome (POTS) and related autonomic conditions. His approach to the diagnosis and treatment of both the symptoms and pathophysiology of these disorders is refreshing – nuanced and holistic.

In this week’s episode, which is Part 1. of this interview, Dr Boon Lim discusses the challenges that are faced by patients with this autonomic dysfunction, and the methods he uses to assess – the tilt table test combined with a detailed patient history. He describes physiologically what happens to the patients’ bodies and brains with POTS or POTS-like syndrome and how that causes vasovagal syncope (fainting). We talk about the importance of hydration and how that alters the body’s ability to cope with changes in posture that can induce tachycardia, and the detrimental effects of bedrest or reduced movement.

In the episode Dr Boon Lim references his diagram showing the changes that takes place in the blood and blood pressure when hydration is increased. The video can be found here, on his stopfainting.com website.

For a man with such a depth and breadth of knowledge Dr Boon Lim’s openness and humility are stark and his strategies for equilibrium are remarkably simple. If you would like to know more about his approach and what he means by ‘missing the elephant’ please tune in for Part 2. of this interview – and if you can’t wait two weeks please ‘follow’, ‘like’, ‘subscribe’, or review here on your podcast app, or comment or contact us with your thoughts via the links below, and perhaps we can release it sooner.

Make Visible

#3 Brain Fog not ‘just in your mind’: new insights into physical markers of Cognitive Impairment with Dr William Hu

Saison 1 · Épisode 3

mercredi 23 octobre 2024 • Durée 50:07

Director for the Center for Healthy Aging Research at the Rutgers Institute for Health, Dr William Hu is a cognitive neurologist: he studies and treats patients whose thinking is affected by disease.

Typically Dr Hu was dealing with Alzheimer's and related dementias in patients who were cognitively ageing whilst otherwise healthy, and those whose cognition was affected by their illness such as HIV or MS. But since the Covid pandemic began, Dr Hu started seeing large numbers of patients whose ‘brain fog’ was sufficiently severe that they suspected they had early onset Alzheimer's, along with those who knew that their cognition, memory and thinking had demised to a degree that they were aware of it, but standard testing was inconclusive.

In this week’s episode we discuss the way in which Hu and his team at Rutgers used brain imaging and analysis of cerebrospinal fluid (CSF), which enabled them to identify changes in the brain of patients with brain fog. Their study, published in Cell, revealed that they could see that these patients had the markers of persistently activated immune function in the brain. Whilst they were unable to detect SARS CoV-2 virus in the CSF, their findings correlate with the theory that those with Long Covid have viral persistence, and they were also able to see that this brain activation was no longer present in those that recovered.

We talk through the implications of these findings for treatment and research into other chronic conditions, and discuss methods that might assist the immune system in recovering from these cognitive impairments and alleviate symptoms. And reassuringly, Hu’s ideas involve trials in treatments that already have FDA approval for other conditions, meaning perhaps resolution is not so far out of reach.

Make Visible

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

Saison 1 · Épisode 4

lundi 4 novembre 2024 • Durée 48:53

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"

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

Saison 1 · Épisode 5

mercredi 20 novembre 2024 • Durée 55:36

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 once again highlights the importance of pacing across these conditions

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

Saison 1 · Épisode 6

lundi 9 décembre 2024 • Durée 48:29

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.

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

Saison 1 · Épisode 8

mardi 21 janvier 2025 • Durée 51:30

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 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 , 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.

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

Saison 1 · Épisode 7

vendredi 3 janvier 2025 • Durée 45:03

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.

Make Visible

#11 Post-Pandemic prevalence of ME/CFS - what we can learn from the increase with Suzanne Vernon, PhD

Saison 1 · Épisode 11

vendredi 28 février 2025 • Durée 56:48

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 , Dr Vernon is tireless in her bid to advance research, educate and improve care for those impacted by ME/CFS.

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Make Visible: ME/CFS, Long Covid, POTS, EDS, Fibro & MCAS Explored – Détails, épisodes et analyse

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