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

STORIES: ME/CFS and EDS left Lizzie bedbound for eight years - a mother's fight for answers and a daughter's fight to reclaim independence.
Lizzie Mooney became chronically sick with ME/CFS and Ehlers-Danlos syndrome (EDS) at just nine years old. By 11 years old she was bedbound. She would spend the next eight years in bed, unable to sit upright, and dependent on her mum, Amy Mooney, for almost everything.

Now 21, Lizzie is slowly reemerging into the world she left behind. Building her independence, she has relearned to walk, started exploring her local area and has even started volunteering her time and skills. According to Amy, Lizzie has “moved mountains” to get where she is today, but it is the determination and spirit of them both that has changed Lizzie’s course.

In this episode Lizzie joins her mother, Amy Mooney, an occupational therapist who became her full-time carer. Through trying to understand her daughter’s condition, Amy has become a respected leader in the complex chronic illness space, helping people manage their conditions and improve their quality of life, and educating other practitioners globally.

Together, they reflect on navigating this experience as daughter and mother, patient and carer. They share the years spent searching for answers, the grief of losing childhood and independence, and the slow, complicated process of re-entering the world.

In this episode, Lizzie and Amy discuss:

Growing up with severe ME/CFS and EDS

Spending eight years bedbound, including four years completely flat

Losing childhood, education and independence to chronic illness

How online friendships became a lifeline

Tools to maintain a sense of self

Relearning the outside world after years in bed

Why contentment became more important than hope

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STRATEGIES: Physical therapy tools to reduce crashes and improve quality of life for POTS, Post-Exertional Malaise (PEM), EDS, MCAS, and infection-associated chronic conditions such as ME/CFS and Long Covid.
Many patients are told that they have anxiety or depression, or they just need to exercise, and that there is little that can be done to help their symptoms.  In this episode, Dr Clayton Powers, physical therapist and leading expert in complex chronic illness management, explains why patients should not be dismissed in this way, and what can be done to help.

Dr Powers specializes in treating ME/CFS, Long Covid, EDS, Fibromyalgia, POTS, and MCAS, and trains other healthcare providers to do the same. While he doesn't promise a cure, his "pacing, not pushing" approach helps patients achieve measurably shorter, less intense, and less frequent crashes.  These are outcomes his patients consistently report over months of care.

In this episode, we discuss:

Why pacing remains one of the hardest skills for chronic illness patients to learn, and how to start

The key difference between POTS and POTS with post-exertional malaise (PEM), and how Dr Powers assesses it

Why standard graded exercise programs (like the CHOP/Levine Protocol) can worsen PEM symptoms

Dr Powers' nervous system toolbox: cold therapy, compression boots, vibration devices, and supplemental oxygen

How physical therapy can support people with mast cell activation syndrome (MCAS)

How wearables like Visible, and trained service dogs, can flag an impending crash before it fully hits

Why "permission to rest" needs to be built into clinical care, rather than treated as an afterthought

Dr Clayton Powers works with the Bateman Horne Center, is a contributor to many of their free resources including the Clinical Care Guide, Therapy for Patients with PEM series and Coffee with a Clinician series. He has contributed extensively to education and research, including a feasibility studies on wearables for POTS management and a systematic review on the impact of exercise on POTS.

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SCIENCE: Are ME/CFS research breakthroughs finally helping us understand the disease and move closer to treatments?
ME/CFS has been underfunded and under-researched for decades.  Despite the scale and severity of the illness, major gaps remain in diagnosis, clinical care and treatment options.

Part of the challenge is scientific. ME/CFS is a complex, multi-system illness that can affect the immune system, nervous system, metabolism and energy production. There is still no single diagnostic biomarker, and people who are more severely affected are often left out of research because participation itself can be difficult or impossible.

People with ME/CFS, advocates, clinicians and researchers have fought to move the field forward but progress has been frustratingly slow. Now, in the wake of Long Covid and growing recognition of infection associated conditions the needle may be finally shifting.

In this episode we bring together leading voices in ME/CFS research, advocacy and clinical innovation to ask: what breakthroughs are changing our understanding of ME/CFS, and could they bring us closer to better diagnostics, treatment strategies and care?
Across these conversations, several themes emerge:

How Long Covid has brought funding, research infrastructure, and clinical attention to ME/CFS

Why genetics research, including DecodeME and LOCOME studies are key milestones that could enable individualised treatment

How precision medicine could enable personalised medicine

How collaboration between organisations is accelerating progress

Why a major gap remains between research momentum and the reality of patient care today

Dr Vicky Whittemore is programme director of the NINDs at the NIH, overseeing the ME/CFS grant portfolio.  She has brought her decades of expertise to identify infrastructure gaps (biobanks, training, data sharing), and produce a full research roadmap focused not on describing ME/CFS but on getting treatments into clinical trials and to the patients.

Amy Rochlin is CEO of the Complex Disorders Alliance (CODA), a patient-founded non-profit organisation accelerating groundbreaking research, clinical innovation, and patient-centred solutions for complex disorders. Through collaborations with industry and clinical leaders they are pushing to develop diagnostic tools and targeted therapies through collaboration and precision medicine at scale. They have recently announced a multi-system research model for complex disease.

Sonya Chowdhury, CEO of Action for ME has seen a palpable shift over her 14 years tenure, position the non-profit at the forefront of the joining patient experience with science.  Co-lead of the DecodeME study (alongside the University of Edinbugh), Action for ME has evolved to be a driving force of the research, building the Genetics Centre for Excellence, identifying patients’ top 10+ research priorities, and giving focus to PEM in their PRIME workshops.

Dr Steve Gardner, CEO and co-founder of PrecisionLife has built on the incredible work of Decode ME and the wealth of patient data to build clear understanding of the genes involved in ME/CFS.  Their work has identified 260 associated genes which has lead to 42 drug repurposing candidates, and the potential to finally offer the stratification and individualise treatment that the community has been needing.

David Tuller is a senior fellow in public health and journalism at UC Berkeley's Center for Global Public Health who has been investigating scientific, methodological and ethical problems within ME/CFS since finding errors in the 2011 PACE trial.  His advocacy work, documented in his ongoing series Trial By Error, was an important voice in finally overturning the NICE guidelines of treating ME/CFS with their admission of Graded Exercise Therapy being harmful and Cognitive Behavioural Therapy not curative.

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STORIES: What do you do when your medical training has no answers for your own child?
This is the question that Dr Binita Kane found herself facing in the aftermath of the Covid-19 pandemic.

As a Consultant Respiratory Physician, Dr Kane was among the first clinicians to recognise that many patients were not recovering after acute Covid infection. Yet when her own daughter’s life was brought to a standstill by the debilitating effects of Long Covid, the challenge became deeply personal.

Forced to confront the limitations of conventional medical knowledge, Dr Kane had to unlearn parts of her training and re-educate herself in order to help her daughter. That journey has since shaped the care she provides to the thousands of patients she now treats at The Long Covid Clinic, and the millions more who benefit from her advocacy and education work around Long Covid and complex chronic illness.

In this episode, Dr Kane shares her daughter’s experience navigating Long Covid, the lessons it taught her as both a clinician and a parent, and how it transformed her approach to patient care.

In our conversation, we explore:

Managing complex chronic illness within a family context

Why an interdisciplinary approach is essential for effective Long Covid care

Why a strategy of complete rest, pacing and energy management is instrumental to recovery, and why it’s so difficult to get right

The case for individualised, patient-led treatment approaches

Dr Kane also explains how tools like Visible can help patients monitor heart rate, track stress and better understand their energy limits, and how this data can support more informed clinical decision-making.

About Dr Binita Kane
Dr Binita Kane is a Consultant Respiratory Physician, founder of The Long Covid Clinic, and a founding member of the International Society for Long Covid and Post-Acute Infection Syndromes (ISLC-PAIS). She is a leading advocate for evidence-based, patient-centred care for people living with Long Covid and related post-viral conditions: champion for Long COVID Kids, advisor for Long COVID Support and an Ambassador for #ThereForMe campaign. Dr Kane also hosts a YouTube channel entitled “The Long Covid Clinic: What you CAN do” to empower patients by sharing the extensive knowledge that she and colleagues have gained.

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SCIENCE: What if a small, non-invasive device could help regulate your nervous system, reduce inflammation, improve cognitive function, and support recovery from chronic illness?
Dr Elisabetta Burchi, psychiatrist, entrepreneur, and Head of Research at Parasym, is helping advance the growing field of neuromodulation, using gentle electrical stimulation to influence the body's nervous system through the vagus nerve.

Often described as the body's communication superhighway, the vagus nerve plays a key role in regulating heart rate, inflammation, mood, cognition, and overall resilience.

Parasym has developed a transcutaneous vagus nerve stimulation (tVNS) device that stimulates the nerve through the tragus, a point on the outer ear, providing a non-invasive alternative to implanted technologies.

Backed by more than 100 studies and clinical trials, vagus nerve stimulation has been investigated across a wide range of conditions, including Long Covid, ME/CFS, hypertension, depression, fatigue, anxiety and cognitive dysfunction, with promising results.

Parasym has also explored how vagus nerve stimulation may enhance cognitive performance and mental clarity in healthy individuals, raising interesting questions about the future of health and human performance.

In this episode, we explore:

What the vagus nerve is and why it matters

How vagus nerve stimulation works

The science behind neuromodulation

The difference between non-invasive ear stimulation and implanted devices

How stimulation may affect heart rate variability (HRV), inflammation, and neuroplasticity

What the evidence says about effectiveness, safety, and adherence

The potential role of vagus nerve stimulation in both chronic illness and everyday health

Whether you're interested in chronic illness, neuroscience, longevity, or optimising brain and body function, this conversation explores one of the most exciting and rapidly evolving areas of health science.

View the glossary of terms here.

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