TLC Sessions - Living with Long Covid

Dr Nancy Klimas, Director of the Institute for Neuro-Immune Medicine, Nova Southeastern University, is an immunologist internationally renowned for her work in multi-symptom illnesses.  In this week’s episode she explains her work, from HIV through ME/CFSand Gulf War Syndrome, that has led to her having insight and an amazing team to channel efforts into Long Covid research and treatment. 

In an insightful overview she describes her work in understanding the mechanisms (viral persistence, viral reactivation), impacts of (MCAS, cell dysfunction, T-cell dysregulation) and potential alleviation of the disease.  She has been involved in studies looking at clinical therapeutics such as LDN and has seen remarkable results with the use of MABs which she is hoping to replicate in a larger clinical trial in the coming weeks.

Living with Long Covid? How was your week?

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Dr Rob Wüst, Assistant Professor in the Faculty of Movement and Behaviour Sciences, is an expert cardiac and skeletal muscle metabolism and mitochondrial function.  He and the team at Vrije Universiteit, Amsterdam, published the “PEM study” in Nature Communications, which investigated the muscular changes in Long Covid patients who experience post-exertional malaise (PEM), or “the worsening of fatigue- and pain-related symptoms after acute mental or physical exercise”.

 In this week’s episode Wüst talks us through the key findings of their study, including the muscular changes, mitochondrial dysfunction and microclots that were present in the Long Covid patients compared to their control group.  He discusses the effects of bedrest on the human body and how exercise is usually beneficial for overall health, but highlights what was revealed through blood tests and muscle biopsies in their study – that Long Covid patients have limited exercise capacity with lower mitochondrial function and our rehabilitation needs to be handled with this unique understanding.

Living with Long Covid? How was your week?

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Dr Thomas Chelimsky, Professor of Neurology and Director of VCU’s autonomic laboratory, is a specialist in autonomic dysfunction and a vocal advocate for considering the mind and body as one cohesive system.  He, along with his team at the VCU clinic, take a unique brain-body approach to treating Long Covid patients, with success.

In this week’s episode he discusses the autonomic issues faced by Long Covid patients including migraine, which he believes is prevalent in c. 50% of patients, and POTS which he discusses ‘almost never shows up alone’, linking  it with the migraine, fibromyalgia and IBS (irritable bowel syndrome).  He explains the roles of the periaqueductal gray region of the brain and the vagus nerve, alongside the implications of trauma (both physical and mental) on the autonomic system, and the role that it plays in Long Covid. 

Living with Long Covid? How was your week?

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Dr Andrew Klein, an anaesthetist at the Royal Papworth Hospital Cambridge, runs the Cambridge Iron Clinic where he treats people with Iron and B12 deficiencies.  Since the start of Covid he has seen an increase in people with these deficiencies, many of whom have been diagnosed with Long Covid.

In this episode Dr Klein talks us through the overlapping symptom sets that render people debilitated with all three conditions.  He describes the various ways in which are body is not able to uptake and store sufficient B12 and iron, the consequences of this, and the way in which they can be simply treated.  And we discuss the data ranges used by the NHS to determine conditions and allocate treatment and once again draw the conclusion that correct care should only be determined by listening to the patient.

Living with Long Covid? How was your week?

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Physiatrist Benjamin Abramoff, M.D.is the Director and Co-founder of the Post Covid Assessment and Recovery Clinic at the University of Pennsylvania, Philadelphia. An Assistant Professor in Physical Medicine and Rehabilition, Abramoff used his expertise to co-author the study, published in Cell, that found that serotonin depletion is prevalent in Long Covid patients.  

In this week’s episode, Abramoff talks us through the findings of their study, the hypothesis of what drives the depletion, the impacts that this has on the body, and preliminary ideas of what might help, both symptomatically and to address the root cause of the disease that seems to be viral persistance.

Living with Long Covid? How was your week?

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Tim Henrich is a Professor of Medicine and expert in infectious diseases, focused on chronic viral infections at the University of California, San Francisco. He is another member of the titan Long Covid research team who have tracked patients since the beginning of the pandemic (LIINC study) and are making roads into understanding the mechanism of the disease and potentials for treating it.

In this week’s episode he talks us through some of the exciting work that he is doing, alongside our previous guests Steven Deeks & Michael Peluso.  Using a combination of longitudinal studies, biopsies and high resolution PET / CT imaging, the team have established changes to t cells throughout the bodies of Long Covid patients, and found evidence of viral persistence.  They are currently conducting multiple clinical trials including monoclonal antibodies to act on viral reservoirs, and the anti-viral Ensitrelvir which has undergone several trials in active SARS-COV2 previously, and believe that they are getting to grips with the pathophysiology of the disease.

Living with Long Covid? How was your week?

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A supplement to Episode 68 - Consultant Neurologist Steven Allder of Re:Cognition Health explains what tinnitus is and why we are experiencing it in Long Covid.

Living with Long Covid? How was your week?

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A supplement to Episode 68 - Consultant Neurologist Steven Allder of Re:Cognition Health discusses the way that injury to the brain causes anxiety and depression in Traumatic Brain Injury and could explain some of the mental health impact of Long Covid.

Living with Long Covid? How was your week?

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Consultant Neurologist Steven Allder of Re:Cognition Healthhas applied his wealth of experience investigating Traumatic Brain Injury (TBI) and Functional Neurological Disorder (FND) to understanding the impact of Long Covid on the brain. In this week’s conversation we discuss inflammation of the brain of Long Covid patients which is visible using PET imaging;  Allder believes this inflammation could be driving the neurological symptoms, and beyond, in a similar way to the impact of a blow to the head observing numerous similarities to TBI; we discuss polyvagal nerve theory; and Allder explains the way in which it takes more than just cold, hard evidence to persuade the scientific community.

And following up on our previous episode, Dr Allder is working with Prof. Andrew Shaw at Attomarker, believing that Long Covid may be driven by viral persistence and that establishing a patient’s antibody gap, using the Attomarker testing, could enable us to remove viral residue with tailored antibody treatment.

Living with Long Covid? How was your week?

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Professor Andrew Shaw, University of Exeter, believes that he has devised a diagnostic test for Long Covid.  His company, Attomarker, have developed a test which can reveal a gap in a patient’s antibody spectrum – their response to acute SARS-COV2 from a finger prick of blood. This gap, he says, has lead to a viral residue that causes the chronic symptoms of Long Covid.  Their hypothesis is that the gap can then be filled, either with monoclonal antibodies, or with an appropriate vaccine, to rid the patient of the disease.

In this week’s episode we explore the theories of antibody response to the strains of Covid, the effects of the vaccine, the results that the Attomarker test and treatment which is being offered by Re:Cognition Health have so far yielded.

Living with Long Covid? How was your week?

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Imperial College Professor of Immunology, Danny Altmann  recently published “The immunology of long COVID”, a fantastically comprehensive overview in Nature Reviews Immunology.  In this week’s episode Altmann, to whom we first spoke in the summer of 2021, talks us through some of the highlights of the work he's reviewed - serotonin depletion, gut biopsy findings, anti-virals, monoclonal antibodies and T cell depletion, along with his impression of a wide range of issues facing Long Covid sufferers, doctors and researchers – the state of patient care, vaccines, and the lack of funding for large scale studies and trials.

Living with Long Covid? How was your week?

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Dr. Amy Proal is the President and Research Director of PolyBio Research Foundation, a non-profit organisation that brings together some of the brightest scientific minds to research how infection-associated chronic conditions are studied, diagnosed and treated.  Their work into Long Covid is bringing together some of the leaders in the field to accelerate studies and clinical trials to further develop understanding and treatment strategies for the condition.  In this week’s episode we talk to Dr. Proal about the current most prominent mechanistic theory of viral persistence in tissues, PolyBio’s research into anti-viral therapeutics, and SARS-COV2 strategies that could help us to prevent Long Covid, rather than having to constantly clear up the increasing residue for years to come.

Living with Long Covid? How was your week?

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Michael Peluso M.D., an HIV and infectious disease specialist at UCSF, has been studying Long Covid patients since April 2020 (LIINC Study).  This, along with his history of working with HIV and other viruses, has given him the knowledge and methods to make some break-throughs into Long Covid pathogenesis, effects and, potentially, treatments.  He, along with his team, has established that Long Covid causes T-cell and immune dysregulation and he has used multimodal molecular imaging to reveal that viral RNA reservoirs are persistent in Long Covid patients.  With the aim of clearing this viral debris, Peluso is now leading a clinical trial using a monoclonal antibody infusion.

Living with Long Covid? How was your week?

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Eric Topol must be one of the leading voices in Long Covid advocacy.  Cardiologist, scientist, author, editor-in-chief of Medscape, and founder of the Scripps Research Translational Institute, Topol has written about Long Covid in publications from The Lancet and Nature, to The Washington Post.  As a clinician a large proportion of his patients are now Long Covid sufferers and he spends a huge amount of his time pushing for advancements in Long Covid treatment and prevention. 

In this week’s episode Dr. Topol guides us through his frustrations surrounding the lack of urgency with which the world is treating this condition, the use of Metformin as a preventative therapy, his understandings of the mechanisms of Long Covid, and how we could make significant advancements by embracing digital data collection and technology. The Long Covid review which he authored with PLRC and Julia More Vogel, published in March this year, is now the third most downloaded medical paper of 2023.

Living with Long Covid? How was your week?

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Harlan Krumholtz, cardiologist and Professor of Medicine at Yale University, is attempting to move the needle when it comes to patient-centric care in Long Covid and beyond.  Working closely with immunologist Akiko Iwasaki, Krumholz not only looks at the heart when it comes to his research into Long Covid. Together this Long Covid power couple are trying to design studies and trials considering the patient first and foremost. In this week’s episode we discuss his latest studies: the LISTEN study, a 15-day trial into Paxlovid for treating Long Covid, and his paper, currently in preprint, looking into internal tremors and vibrations in Long Covid. With a broad understanding of the disease and its effects on patients, his knowledge of the illness goes far beyond the heart, whilst, once again, displaying this humility and humanity we are seeing amongst some of the most prominent medical professionals who are carrying the torch for Long Covid patients.

 

Living with Long Covid? How was your week?

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Credited as being the founder of functional medicine, Dr Leo Galland has spent the past 40 years trying to create a patient-centred version of healthcare. Using pharmaceuticals, supplements, lifestyle and complimentary therapies he has drawn on his vast knowledge of patients and holistic healing, to create a comprehensive protocol for Long Covid patients.  Designed to remove any active virus, rebuild our natural stores and repair the misfiring of our cells, Dr Galland’s method has been effective in helping people to recover from disease. In this episode we discuss his wide ranging knowledge, including diving into ACE2 which he believes drives the disease, discussing the complexities of Mast Cell Activation Syndrome, and getting his impartial opinion on some of the supplements or treatment strategies we’ve previously featured.

Living with Long Covid? How was your week?

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Researcher Vicky van der Togt and virologist Dr Jeremy Rossman have spent the past 2.5 years trying to help Long Covid patients and research via their organisation Research-Aid Networks.   Their latest paper, published in Frontiers, hypothesises that it is an acid-base disruption that drives the symptomatology of Long Covid.  In this week's episode we discuss the impacts of dysregulated pH, how you can rebalance it and the results that they have observed.  Further research in this field has the potential to help with both Long Covid and a wide range of other diseases.

Living with Long Covid? How was your week?

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Dr Wes Ely, a pulmonary and critical care doctor, has built a remarkable resource for Long Covid sufferers within the Critical Illness, Brain Dysfunction and Survivorship Centerat Vanderbilt University Medical Center in Nashville, Tennessee, of which he is co-director.  A professor, using his knowledge of his clinical knowledge and his extensive research into debilitating brain disease, he has developed care strategies and support for large numbers of Long Covid patients and helped many more with his writing on social and in the mainstream media, trying to raise awareness, understanding and compassion for sufferers.

Living with Long Covid? How was your week?

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Molecular Virologist, Bhupesh Prusty, promised to reveal more when we last spoke, four weeks ago.  Here he presents what he believes to be a biomarker for Long Covid, explaining the mechanism, its similarity to ME/CFS, what his research and findings have proven, and how we might take this research forward to develop further understanding and treatment strategies.

Living with Long Covid? How was your week?

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Lavanya Visvabharathy, a T cell immunologist at Northwestern University, Chicago, has led extensive studies into Long Covid, but we learned that some of those studies, despite their merit and rigour, were proving hard to publish in top tier medical journals.  In this week's episode we lift the lid on the process of scientific publishing, talking through the challenges that Visvabharathy has faced trying to publish Long Covid research, the peer review process and the political landscape of the scientific research world.  Her latest paper, despite almost a two year delay, is published this week in Frontiers in Immunology.

Living with Long Covid? How was your week?

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Dr Jim Jackson, research professor of Medicine and Psychiatry at Vanderbilt University Medical Centre, does not believe that Long Covid is all in your mind, but he has found that treating the brain, as if it has a brain injury, can help Long Covid recovery.  In this week’s episode Dr Jackson explains his clinical experience of the neurological impact of Long Covid from brain fog to anxiety, PTSD to OCD.  He discusses the power of cognitive rehabilitation (which should be viewed as physiotherapy for the brain) and tells us about his book “Clearing the Fog: A practical guide to surviving and thriving with Long Covid”.  And he talks us through the power of talking to others within the community: his support groups have been a hugely impactful for sufferers enabling them to learn from each other, learn how to advocate for themselves, and give them hope. 

Living with Long Covid? How was your week?

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Dr Raouf (Ron) Gharbo has spent many years treating those with brain injury and autonomic disorders using Heart Rate Variability (HRV) metrics.  Physical medicine and rehabilitation specialist, and Director of Autonomic Rehabilitation at VMU Health, Dr Gharbo this week explains the sympathetic and parasympathetic nervous systems, the metrics he uses to diagnose conditions - with Long Covid now being one of his primary focuses - and the power of sleep and breathing in regaining function and control of our health.

Living with Long Covid? How was your week?

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Dr Bhupesh Prusty believes that he has found 'the switch'.  A molecular virologist from the University of Würzburg, Germany, he has turned his work looking at ME/CFS to look at Long Covid, and believes that viral reactivation in both diseases could hold the key.  It’s this viral reactivation that, rather than causing a detectable elevation of something in our blood, is causing a depletion in our bodies.  This could be the biomarker we’ve been seeking and he believes that redressing the balance of this depletion could rid us of Long Covid.

Living with Long Covid? How was your week?

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In this week's episode we receive no-nonsense, practical advice from Prof. Jack Lambert, a consultant in infectious diseases at the Mater Hospital in Dublin. He has been monitoring long term recovery following COVID-19 since he saw the first patients in Ireland in March 2020.  He has used his knowledge of chronic conditions caused by other infectious diseases - Lyme disease, Ebola, HIV, Hepatitis C - to develop a protocol to treat Long Covid patients.  Using LDN (Low Dose Naltrexone) in combination with NAC and anti-inflammatory supplements, alongside breathing exercises, he believes in a carefully tailored approach that has been successful with many patients, giving us hope that perhaps the damage is reversible.

Living with Long Covid? How was your week?

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If you’re looking for an overview of all of the research into Long Covid, this Nature review, undertaken by Patient Led Research Collaborative (PLRC) under the guidance of the cardiologist Dr Eric Topol, is a great place to start.  A collation of the findings from almost 300 biomedical research papers on Long Covid, it sets out the major findings, mechanisms and recommendations that have been researched to date.

In this week’s episode we had the pleasure of speaking to Lisa McCorkell and Hannah Davis, two of the co-founders of PLRC and co-authors of this extensive review, to discuss their work, the latest research into Long Covid, and their view of the future for the chronic condition.

Living with Long Covid? How was your week?

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Akiko Iwasaki, a Professor of Immunobiology and Molecular, Cellular, and Developmental Biology at Yale University, with a particular interest in mucosal infection, is making gains in Long Covid research. Her work with Dr David Putrino (interviewed in Episode 47) revealed several findings that move us closer to identifying a bio-marker; her work with Michele Monje of Stanford University looked at the chief mechanisms that may be driving the neurological features of Long Covid; now, in collaboration with Harlan Krumholz, they are leading a study into the efficacy and safety of Paxlovid in Long Covid.

And her Yale LISTEN study to understand Long Covid, post-vaccine adverse events and the corresponding immune responses is recruiting now.

Distilling some of her remarkable knowledge into a very digestible form, you do not want to miss this episode.

Living with Long Covid? How was your week?

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Dr Ziyad Al-Aly is chief of research and development at the Veteran Affairs St. Louis healthcare system and a clinical epidemiologist at Washington University in St. Louis.  Direct access to both Long Covid patients and the Veteran Affairs health care records enables Al-Aly to have led some of the most impactful research and studies into Long Covid. From the long term neurological outcomes and the risk of diabetes, to the impact on the heart, Al-Aly’s studies paint a serious picture of the long term damage caused by Covid-19.  And his findings on the risks associated with reinfection would make anyone take measures to avoid contracting the disease.

Living with Long Covid? How was your week?

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Dr Benjamin Natelson, professor of neurology and director of the Pain and Fatigue Study Centre at Mount Sinai, has been studying the mechanisms, effects and management of chronic fatigue for almost half a century.  In this week’s conversation he explains how he has used his knowledge to study and treat those with Long Covid.  The recipient of multiple grants, his interest in the immunological and infectious causes of chronic fatigue and fibromyalgia enables him to approach Long Covid with a wealth of knowledge, looking at the vagus nerve, blood volume, exercise and sleep, as well as studying Long Covid alongside CFS without a prior Covid-19 infection, to establish the similarities and differences between the conditions.

Dr. Natelson is currently running multiple studies into chronic fatigue, alongside several into Long Covid and is looking for patients (within 50 miles of New York).  To take part, please contact his lab or 001-212-844-6665.

Living with Long Covid? How was your week?

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What if there were an activity tracking app designed to monitor and aid recovery from chronic illness, instead of pushing fitness goals?  That is exactly what Long Covid sufferer Harry Leeming conceived with his team at Visible.  Together they have created an activity tracking platform specifically for Long Covid and ME / CFS sufferers to enable them to track and analyse their illness in real time.

In this week's episode Noreen and Emily talk to CEO and co-founder Harry, with whom they have become friends through their illness.  Currently in the beta phase, Visible's app is now available to download here, offering sufferers the ability to enter their symptoms, medication, activity levels and check their HRV daily.  This will be partnered early in 2023 with a wearable integration.

Living with Long Covid? How was your week?

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This week, we spoke to Mount Sinai neuroscientist and physical therapist Dr. David Putrino about his latest study on 215 patients.  A collaboration between Mount Sinai and Yale University in the U.S., Putrino worked with immunologist Akiko Iwasaki to see if they could find any ‘Distinguishing features of Long COVID identified through immune profiling’.  The study brought to light some potentially useful biomarkers and certainly highlighted areas for further research such as T-cells,  interleukins and hormone levels.  Putrino explains how this hypothesis-generating study is a jumping off point for his and other labs, puts into perspective the cortisol-level findings that media were quick to jump on, and urges two things - further research and listening to patients.

Living with Long Covid? How was your week?

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Dr David Strain is a titan in the Long Covid research and clinical field.  With the ability to boil down complex medical theory and research into very comprehensible explanations, Dr Strain explains HRV and how we can use it to monitor and potentially manage our symptoms.  He talks us through vagal tone, the impact of vaccines and COVID-19 strains on Long Covid and we ask whether the increased incidence of strokes, diabetes, dementia and heart attacks could all be classified as a version of Long Covid.  We also discuss Dr Strain’s current research (Sano GOLD study) into genetics and the role they might play in the development of Long Covid and our ability to treat the condition. 

Living with Long Covid? How was your week?

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Amiad Abrahams, a Health Psychologist, the Deputy Lead for North West London's Long Covid Psychology service, understands the effect that the mind and Mindfulness can have on patients with acute and chronic conditions.  Since mid 2020 he has been leading “COMFORT” – a group Mindfulness course offered by St Mary’s Hospital.  In this week’s episode he talks us through the power that the mind can have on the body, and the impact that chronic illness can have on the mind, aiming to "de-psychologise Long Covid, whilst psychologising life itself".

Living with Long Covid? How was your week?

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Professor Doug Kell is a systems biologist who has been studying anomalous clotting for many years, and since the pandemic began has turned his knowledge, working alongside Prof. Resia Pretorius, to explore the theory of microclots in Long Covid patients.  In this week's episode Prof. Kell explains to us the way in which these clots form, his theories behind what is occurring, and what are the current, albeit anecdotal, treatment strategies.

Living with Long Covid? How was your week?

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Dr Tae Chung runs the POTS clinic at John Hopkins University.  Approaching this with his two specialties- neuromuscular and physical medicine and rehabilitation - he treats POTS patients, and those with Long Covid POTS, with a combination of functional exercises, alongside blood volume expansion and medication.  In this week's episode he talks to us about his experience,  working with his MDT, treating thousands of POTS and Long Covid POTS patients.  He explains the paradox of 'exercise' when it comes to treating our illness, discusses how our nervous system is affected,  and we hear the effective strategies he is using.  His work has led him to the belief that Long Covid, certainly in instances of POTS, may be autoimmune driven and he is now involved in a phase two clinical trial using drugs that target autoantibodies.

Living with Long Covid? How was your week?

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With the established medical system offering few options to treat Long Covid holistically - most sufferers are at best only being offered symptom management - many are turning to alternative therapies.  This week we spoke to Joachim Gerlach, chairman of Vedicinals, who have developed the nutraceutical Vedicinals9 for the treatment of acute and Long Covid.  This nutraceutical, consisting of nine bio-active molecules targeting specific pathways, draws on traditional ayurvedic medicine alongside modern science to offer a supplement which, from pre-clinical and clinical trials, seems to be having a positive effect.

Living with Long Covid? How was your week?

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Dr Eric Feigl-Ding was one of the first public health scientists to raise the alarm as COVID-19 took hold.  Often several steps ahead of the policy-makers, Feigl-Ding shares with us his view that Long Covid looks to be an immuno-compromised state, not dissimilar to that caused by HIV.  Could this explain other current outbreaks - summer flu, monkeypox, Hepatitis?   He believes so.  In this wide-ranging interview we take a look at the world's response to the pandemic and how we are going to need to wake up to the slow-burn that is Long Covid.

Living with Long Covid? How was your week?

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Dr Bettina Hohberger, an ophthalmologist at Erlangen University with expertise in glaucoma, believes that looking at the eye – an area of the body where the blood vessels are visible – is representative of the rest of the human body.  She has seen that there is a change in blood vessel density in the eye of her patients with Long Covid and believes that this blood vessel density could be part of the key to unlocking and treating Long Covid. 
Her belief is that Long Covid falls into three subgroups - Autoimmune, Viral Persistence & organ damage from severe acute COVID-19.  She is currently studying the development of diagnostics to identify these subgroups, and has used a targeted autoantibody neutraliser - BC007 - to successfully treat four Long Covid patients to date.  Further trials are taking place soon.

Living with Long Covid? How was your week?

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Lavanya Visvabharathy, a T cell immunologist, has methodically applied her expertise to look at samples from patients at the Long Covid clinic at North Western University in Chicago, to try and establish the mechanism driving the disease.  Her personal experience of Long Covid's effects and the role of autoimmunity - she has both Long Covid and rheumatoid arthritis - combined with the wealth of data she has gathered, have led her to believe that Long Covid could be due to viral persistence.  
In this fast-paced episode Visvabharathy talks us through her hypothesise, giving us a glimpse into her world of T cell dysfunction and autoimmunity, via the complexities of Long Covid NIH funding, and once again we discuss HIV and what we can learn from the way that virus is treated.

Living with Long Covid? How was your week?

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The Long Covid space has been abuzz with talk of Tollovid - the dietary supplement that is claimed to act, in much the same way as Paxlovid, on inhibiting 3CL protease.  We wanted to get some clear answers on how this supplement works, the potential benefits, and its safety profile.  We spoke to CEO of Todos Medical, Gerald Commissiong, who has brought this product to market, and Dr Dorit Arad, a biochemist and drug developer who has engineered Tollovid from her 28 years working in the field of protease inhibition in viruses. They were both keen to impress that this is a supplement and not a drug - they do not claim to prevent, treat, or cure Long Covid with Tollovid - but they suggest that there is anecdotal evidence that it helps.

Living with Long Covid? How was your week?

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Dr Stephen Griffin, virologist and member of Independent SAGE, talks us through the workings of antivirals - both in acute COVID-19 and in Long Covid.  He explains what antivirals do - suppressing the virus rather than removing it from our systems - and suggests that the use of one course of individual antivirals might not be the holy grail that Long Covid sufferers are hoping.  We talk viral persistence versus autoimmunity, the action of vaccines, and whether monoclonal antibodies could be useful.  

Living with Long Covid? How was your week?

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Dr Alec Schmaier, a cardiology and vascular specialist, has studied the impact that COVID-19 has on the endothelium.  This week we called on his knowledge of the vascular system and coagulation issues to talk us through the potential role of the endothelium in Long Covid.  We wanted to take a step back and look at why clotting might be playing a role in our Long Covid symptoms, and discuss what drives it.  Schmaier offers us that and more in a discussion that includes anticoagulant drugs, the stiffening of arteries and comparisons with endothelial damage in conditions such as sepsis.

Living with Long Covid? How was your week?

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In Long Covid it can be hard to keep up with what we should be eating, not eating, supplementing and changing when it comes to providing our bodies with the correct nutrition to optimise recovery.  This week Professor of Dietetics, Mary Hickson, provides us with some down-to-earth advice about how diet affects and is affected by Long Covid, dispels some myths, suggests some strategies to try and points us to the resource she has developed - The Nutrition and COVID-19 recovery knowledge hub -  a ‘one stop shop’ of information to support recovery from COVID-19 through nutritional care.

Living with Long Covid? How was your week?

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Not only do many Long Covid patients suffer from P.O.T.S or P.O.T.S-like symptoms, but there are a number of similarities between the two conditions and their management.  The cross-over of symptoms - from breathlessness, palpitations, and chest discomfort, to fatigue, pain, brain fog, sleep disturbance and orthostatic intolerance - is remarkable.  So, do we all have POTS?  To shine some light on POTS and its diagnosis, we spoke to Dr Satish Raj,  a cardiologist specialising in autonomic dysfunction and Professor at the University of Calgary.  Raj is currently leading a study of Cardiovascular Hemodynamics and Autonomic Dysfunction with Long Covid looking to establish the role of autonomic disorder in Long Haulers.

Living with Long Covid? How was your week?

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Perry Nickelston believes that focusing on the much overlooked lymphatic system could be what we each need to enable our bodies to heal.  In this week’s episode Nickelston, chiropractor and holistic health coach, talks us through the role of the lymphatic system and explains how it could be what is holding us back from recovering from chronic diseases like Long Covid.  By getting the lymph moving and clearing the cellular waste, we can start to reduce inflammation and give our body a clean slate, enabling it to absorb all the oxygen, nutrients, medicines and therapies that we are using. He guides us through his ‘Big Six’ lymphatic reset and explains the role of the vagus nerve in regulating the balance our body requires.

Living with Long Covid? How was your week?

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There may be a treatment from which a third of women with Long Covid could benefit.  It is not a new drug, it is safe, and it has been proven to work anecdotally.  And yet there are no clinical trials looking at HRT as a potential treatment for the largest cohort of Long Covid sufferers.  In our patriarchal medical system many women are not even being asked about their menstrual cycle or hormones in relation to Long Covid, and yet there is clear evidence that our hormones have been impacted.  This week, Dr Sarah Glynne, G.P. and menopause specialist, talks us through her research into Long Covid and the peri-menopause, and the prescribing of HRT as a treatment for Long Covid, which she believes shows tangible results.

Living with Long Covid? How was your week?

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A Professor of Medicine in residence at the University of California, San Francisco, Steven Deeks M.D., is an expert on HIV-associated immune dysfunction. Using his 30 years of experience researching viral illness, Deeks has turned his hand to the study of the long term impacts of COVID-19 on our immune systems.  The parallels that he draws between HIV and Long Covid are startling.  Studying a community cohort for the past two years, Deeks believes that we are beginning to unravel the mechanisms of Long Covid, and there is hope that some of these are treatable.  

Living with Long Covid? How was your week?

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Dr Michael Gonevski has been administering Long Covid sufferers with Hyperbaric Oxygen Therapy (HBOT) since the condition emerged.   The treatment, generally used for diving related oxygen issues and difficult to heal wounds, is a daily course in which patients breathe 100% oxygen at pressure.  The theory is that the oxygen is diffused into the blood plasma, providing more than ten times the normal supply of oxygen, which is then able to reach cells that have been shut off, repairing damaged tissues, supporting the body's ability to heal and alleviating symptoms.  Gonevski extols that the treatment can save a limb from amputation.  With a clinical controlled trial in the pipeline, we look forward to seeing whether it could save Long Covid sufferers from being cut off from their former lives.

Living with Long Covid? How was your week?

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What if every COVID-19 infection was causing a degradation of our T cells, impairing our ability to fight infection?  Anthony Leonardi studied T cells for his PhD and from the beginning of the pandemic that is what he has observed -  T cell harm triggering autoimmune disfunction.  That is in every COVID-19 infected sample he's studied, not just for those of us already showing the signs of Long Covid, every one.  This degradation on a cellular level is even more pronounced in Long Covid patients.   

Leonardi talks us through the role that T-cells play in fighting infection, the changes that he is seeing, what that means for our immune systems and what might happen if we continue to be infected, highlighting the importance of mitigation if we are to avoid mass disability.  So if each infection chips away at our T-cells' ability to operate, with the potential to compromise the immune system of each person that contracts it, governments' decisions to allow the virus to run through populations might not look so promising.  We could be looking at a world of Long Covid.

N.B. this episode contains a lot of scientific terminology.  To help decipher we have created a glossary that is available within this episode's description on our website here.

Living with Long Covid? How was your week?

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This week we speak to Professor Robert Thomas who has used his work as a Consultant Oncologist and Professor of Nutritional Science to develop potential nutritional intervention for Long Covid.  He talks us through the gut microbiome and the power that it has to harm as well as heal. 

His Phyto-V study looked at whether the addition of a combination of Probiotics and Polyphenals could impact Long Covid recovery. The results are definitely positive, and what Professor Thomas has to say makes a lot of sense when dealing with Long Covid, as well as other chronic inflammatory conditions. 

Living with Long Covid? How was your week?

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This week we talk to the vivacious Dr. Sabina Brennan health psychologist, neuroscientist and author of the book Beating Brain Fog, about the neurological symptoms that leave some of us feeling foggy, but lead to some people being unable to function.

When it comes to Long Covid, Brain Fog is an umbrella term that refers to a myriad of symptoms, stemming from various factions of the brain, that are challenging the day-to-day functioning of thousands of people with Long Covid. It is the second most common symptom amongst Long-haulers. It doesn’t sound too frightening - ‘brain fog’ - but the reality is that the
latest insights suggest that there is neurological damage and the symptoms can actually stop you living your life. 

We talk through all the various manifestations of Brain Fog, what the factors are that are causing the fog and the various things we can do about it. 

Living with Long Covid? How was your week?

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Consultant physician and endocrinologist Dr. Paul Jenkins runs the London Endocrine Centre, and drawing on this expertise and treating patients with post-viral fatigue syndrome he has now established a multi-disciplinary Long Covid Clinic.  In this week's episode Dr Jenkins walks us through the endocrine system and we discuss the way in which hormones are being affected by and are affecting our Long Covid.

The hormones in your body’s endocrine system control nearly all the processes of the body. from metabolism to growth, emotions, mood, sexual function and even sleep.  Dr Jenkins shares with us some of the ways that he has been able to treat Long Covid patients by addressing endocrine abnormalities that seem to have been triggered by the illness, as well as discussing his holistic approach to the management of the disease - getting back to the basics of sleep restoration, energy management, and the benefits of sunshine in rebuilding patient's health.

We will be seeing if we can get some sunshine on prescription! 

Living with Long Covid? How was your week?

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Dr Bruce Patterson believes that he understands the mechanism causing Long Covid, and has treated over 14,000 Long Haulers in the United States - to varying degrees of success.  His recently published paper details how SARS-COV S1 protein - fragmented viral sequence - is seen in the cells of Long Covid patients, driving a prolonged inflammatory response. 

In this week's episode Dr Patterson discusses his findings and the treatment protocol that his company, IncellDX, has developed - a combination of HIV drug Maraviroc and statins to dampen the immune system.  An interesting and attractive theory and treatment plan, and a very engaging interview but, as we discuss, it's not without controversy.

Living with Long Covid? How was your week?

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To gently welcome in the New Year we asked Respiratory Physio Robin McNelis to give us a guided breathing exercise to optimise our O2 and CO2 and provide a few moments of calm after what has been a tough couple of weeks here at The Long Covid Sessions.  We were delighted to check back in with Long Hauler Robin and find that he has been managing to rebuild his health with careful monitoring of his heart rate.  We hope that his insights can help our listeners on the road to a healthy 2022.

Living with Long Covid? How was your week?

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Francis Vaz is an ENT surgeon who has seen a large increase in referrals due to Long Covid.  In this week's episode he talks us through the symptomatology, drivers and treatments, or at least management, of some of Long Haulers' most common and prominent issues.  From tinnitus to the loss of sense of smell (anosmia) Vaz provides us with advice, resources and explanations for some of what we are hearing, smelling and struggling to swallow.

Living with Long Covid? How was your week?

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Dr Tomer Bronshtein, head of research at Bonus BioGroup, has been developing cellular therapies to treat acute respiratory distress in Covid-19 patients.  In their trials of ‘MesenCure’, which uses mesenchymal cells, the treatment has been shown to dampen the hyper-inflammatory response in the acute phase of the disease as well as promote the healing of injured lung tissue, dramatically improving survival rates and reducing the length of hospital stays.  Whilst MesenCure is being developed as a treatment in the acute phase, the data suggests that its efficacy can also reduce the chances of developing Long Covid.  We talk to Dr Bronshtein about their results, potential future applications, and the need for caution as we all battle to find a potential cure.

Living with Long Covid? How was your week?

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Following on from our interview with Professor Resia Pretorius and her hypothesis of microclots driving the symptoms of Long Covid, we speak to Dr Asad Khan, a Long Hauler who has travelled to Mülheim, Germany, to undergo H.E.L.P. Apheresis in a bid to remove those clots.  Khan talks us through the process in detail, describing how he was able to visibly see these clots in the blood that was drawn out of him as he underwent this method of filtration and blood cleansing.  But it has been the addition of anticoagulants that really seem to have made a marked difference to Khan.  Fascinating anecdotal findings which warrant further research and discussion.

Living with Long Covid? How was your week?

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Mitochondrial dysfunction could be one of the mechanisms driving Long Covid.  But what are mitochondria, what has happened to them in people with Long Covid, and how can we fix them?  This week we talk to Dr Betty Raman, Oxford researcher and MRI specialist who has noticed changes in the organs of Long Covid patients, and Axcella Therapeutics’ CEO Bill Hinshaw about AXA1125 – a potential treatments that they are trialling with Raman’s team, to assess its power to reset the mitochondrial cells.

Living with Long Covid? How was your week?

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Professor Alex Richter, Clinical Immunologist at the University of Birmingham, looks at post Covid both through patients and microscopes.  Her work into the role of autoantibodies in acute and post-Covid has found very specific patterns.  She believes that Long Covid may be similar to ME / CFS and whilst she admits that we have not made the required progress into the science of those conditions, she believes that we can approach the treatment of them pragmatically and use clinically tried and tested methods to manage our symptoms.

Living with Long Covid? How was your week?

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The Long Covid community is abuzz with talk of microclots. We take it back to the science in this week’s conversation with Resia Pretorius, a distinguished professor of Stellenbosch University who has identified the presence of microclots in the blood of Long Covid sufferers.  But what are microclots, how do we identify whether we have them, and what are the proven treatments for them?  Professor Pretorius explains her observations and highlights that there is still a lot for us to learn and the need for a multi-pronged approach.

Living with Long Covid? How was your week?

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What if some of your Long Covid symptoms could be improved by changing your breathing?  In this week’s episode respiratory physiotherapist and Long Covid sufferer, Robin McNelis, explains the science behind some of us being given breathing exercises.  From breathlessness to fatigue and gastrointestinal issues, changes to breathing in the acute phase of COVID-19 could have had a dramatic effect on our subsequent symptoms.  So even if you don’t think you have lung issues, it is worth listening to Robin.

Once a regular marathon runner, he talks us through his personal journey of Long Covid and gives sanguine advice, from first hand experience, of the benefits of serious pacing. 

Living with Long Covid? How was your week?

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Writer Michael Rosen became seriously ill with  COVID-19 in March 2020.  Rosen discusses how his brush with serious illness has left him with long lasting physical disabilities.  We talk politics, philosophy, and the seeking of comfort through seeded bagels and a sense of communality.
#longcovid

Living with Long Covid? How was your week?

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An extra  bite from The Long Covid Sessions with top tips from our experts.  Dr Katy Munro details the supplements she recommends for migraine sufferers, and most importantly talks about the specifics and dosage.  Interestingly all of these 'nutraseuticals'  had been recommended to us for aiding in Long Covid recovery but we were both taking the wrong quantities.

Living with Long Covid? How was your week?

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Living with Long Covid? How was your week?

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This week’s conversation takes a deep dive into Long Covid gut issues.  Dr Corinna Geiger, a specialist in Mast Cell Activation Syndrome, has seen the number of patients needing her help soar in the wake of Covid-19.  MCAS has been cited as a potential Long Covid driver or symptom for several months now.  She talks about the various possible mechanisms of gut problems in Long Covid, the route to diagnosis, and we learn that these issues are indeed treatable, and by treating the gut she has helped people to recover entirely from Long Covid. 

Living with Long Covid? How was your week?

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Dr Amy Small is a GP and a Long Covid fighter.  She's fought a personal battle with the disease and it seems like she's won.  She's fighting for support for patients with Long Covid in Scotland where she is a locum doctor in Lothian, having lost her job as a partner in East Lothian due to her illness.  She is a mother, a wife of a Long Covid sufferer, and advocate for those suffering from the condition.  And she is a ray of hope for all those of us who don't know when this will end - she talks us through what she did to get herself well and once again we hear it is all about pacing.

Living with Long Covid? How was your week?

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Guy Leschziner is a professor of neurology and sleep medicine, leader of a sleep disorder clinic, sleep author, BBC Radio 4 'Mysteries of Sleep' broadcaster... this man knows a lot about sleep.  He is also part of a Long Covid clinical team.  This week we use the breadth of his expertise to talk through the impact of Long Covid on sleep and the impact of sleep on Long Covid.  He shares his knowledge of the potential therapies for sleep disturbances, giving practical advice on how we can start addressing our sleep issues - simple steps we can take at home and help  that is available via your GP.

Living with Long Covid? How was your week?

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Consultant Neurologist Dr. Hadi Manji is part of the team leading a new clinic for neurology patients with ‘Long Covid’ at the National Hospital for Neurology and Neurosurgery (NHNN) with funding from the National Brain Appeal. The COVID Neurology Clinic will focus on complaints such as headache, ‘brain fog’, muscle weakness and brain inflammation in patients recovering from the COVID-19 virus. He speaks to us at the The Long Covid Sessions about what he thinks is affecting the post-Covid brain in some people and causing some of the many neurological symptoms. He explains in broad terms what is going on in the body and offers some advice to help ease the symptoms.

Living with Long Covid? How was your week?

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Physiotherapist Darren Brown is  a Long Covid sufferer and founder of Long Covid Physio.  In our conversation this week he lays out the fundamentals of our rehabilitation needs and explains how pacing might be the key to getting a handle on our symptoms.  He takes his experience working in HIV and Oncology rehabilitation and demonstrates how we can apply our knowledge of treating those conditions, with their fluctuating health challenges, when facing Long Covid.  Patient advocate, peer supporter and a strong voice leading the charge in developing an understanding of the needs of Long Covid sufferers, Darren opens our eyes to the breadth of the role physio might have in our recovery.

Living with Long Covid? How was your week?

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As the start of the school year approaches, we look at the impact of Long Covid on children and their parents.  We talk to Frances Simpson, one of the founders of Long Covid Kids,  about her 18 month struggle to get medical attention for her own children whilst battling with Long Covid herself, and how she has chosen to be an advocate for children and parents in the UK and beyond.  We also speak to two teenage Long Covid sufferers, Kitty McFarland and Liliana Jackson. 

Living with Long Covid? How was your week?

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Still riding the Coronacoaster, in this week's episode Noreen and Emily manage a brief catch up with each other, talking over their personal situations and observations on some of the things that they've learned over the past weeks:  they share their opinions on drug interventions, give first-hand experience of US awareness and treatment, talk about some of the latest studies, and give their thoughts on the idea of HRT as a Long Covid treatment strategy.

Living with Long Covid? How was your week?

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UCLH Long Covid Clinic has been described as the gold standard of treatment. Clinical lead and respiratory consultant, Dr Melissa Heightman, talks us through their multi-disciplinary approach, the areas that we need to develop for effective universal treatment and the challenges facing the Long Covid clinics and NHS at large.

Living with Long Covid? How was your week?

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As we start to explore the different systems of the body affected by Long Covid, this week we speak to Consultant Cardiologist Dr Alexander Lyon.  He unpicks how Long Covid affects the heart, talks us through the symptoms that the heart causes, and gives us hope that recovery is possible in a majority of cases.

Living with Long Covid? How was your week?

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Professor of Immunology, Danny Altmann, talks us through his work looking at the way in which Covid-19 has left its mark on the immune system in cases of Long Covid.  He draws comparisons with other viruses to try and understand the long term prognosis for Long Covid sufferers, as well detailing his efforts to develop a potential blood test for diagnosis of the condition.  A brilliant mind, Professor Altmann does not shy away from political, ethical and moral debates arising from the impact of the disease.

Living with Long Covid? How was your week?

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Sonia Gallego works as a reporter for an international news channel and lived a full and active life until she contracted Covid in December 2020.  Since then she has had to dramatically change her expectations.  Suffering many of the most common Long Covid symptoms, she has also become pre-diabetic and is currently having her endocrine system investigated. 

Living with Long Covid? How was your week?

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Dr. Paul Glynne,  Consultant Physician and Medical Director at The Physicians’ Clinic and former medical director at UCLH. He is the Sherlock Holmes of diagnostic medicine and is now treating patients with Long Covid.  He shares with us the current management strategies he believes can help Covid 'Long Haulers'. Glynne advocates a holistic and multi-disciplinary approach to help patients manage their symptoms. 

Living with Long Covid? How was your week?

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Dr Elaine Maxwell, Clinical Adviser at the National Institute for Health Research (NIHR) breaks down all the world’s Long Covid research for us into bite-sized pieces.  Maxwell explains who is being affected, how they are affected and what is being done to try and help. And yes - it's a real thing.

Living with Long Covid? How was your week?

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Sometimes it just takes two people to start the national conversation. 
Noreen Jameel and Emily Kate Stephens talk about what it's like to live with Long Covid and what inspired them to create this podcast.

Living with Long Covid? How was your week?

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A brief introduction to a brand new podcast on Long Covid. What it's like to live with this new condition and what the medical community is doing to try and find a cure. 

Living with Long Covid? How was your week?

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