Make Visible: Chronic Illness Explored18 Sep 2024

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

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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Episoder(36)

#35 Vagus nerve stimulation for chronic illness and better health with Dr Elisabetta Burchi

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,...

29 Mai 1h 1min

#34 Fibromyalgia and chronic pain management with Ryan Bourdo, Physical Therapist

STRATEGIES: Physical rehabilitation for chronic pain conditions. If you live with fibromyalgia, ME/CFS, EDS or chronic pain, you've likely heard that exercise may help. You've also probably learned, t...

15 Mai 55min

#33 Hypermobile Ehlers-Danlos Syndrome (hEDS) undiagnosed for 23 years with Dr Lucy Foulkes

STORIES: Undiagnosed Hypermobile Ehlers-Danlos Syndrome (hEDS) | Chronic Pain, Diagnosis & Living with Complex Chronic Illness For 23 years, Dr Lucy Foulkes has lived with chronic pain, migraines, end...

1 Mai 1h 13min

#32 Hidden Virus, Immune Exhaustion & the Brain: Long Covid, ME/CFS and post-viral illness with Dr Avindra Nath (NIH)

SCIENCE: Long Covid | ME/CFS | Neuroinflammation | Clinical Trials What happens to the brain when a virus takes hold and why do some people never fully recover? Dr Avindra Nath has spent his career at...

24 Apr 57min

#31 POTS: Symptoms, understanding, and management with Dr Tae Chung

STRATEGIES: Understanding Postural Orthostatic Tachycardia Syndrome (POTS) - Practical Strategies for Diagnosis and Treatment “80- 90% of POTS patients are disabled to a certain extent - people who ju...

3 Apr 57min

#30 Navigating medical appointments with Dr Alba Azola

STRATEGIES: How do you navigate medical appointments when you’re living with a complex chronic illness? Too often, patients with energy-limiting conditions are told there’s “nothing to be done.” Many ...

20 Mar 52min

#29 Long Covid: what has six years taught us?

SCIENCE: Long Covid awareness, understanding and research. Long Covid Awareness Day (15th March 2026) marks six years since the COVID-19 pandemic unleashed its long tail of Long Covid on millions arou...

6 Mar 1h 5min

#28 From Olympic hopeful to Long Covid: Oonagh Cousins’ story

STORIES: Oonagh Cousins - Olympic Hopeful to Long Covid Advocate When professional rower Oonagh Cousins was pre-selected for the Tokyo 2020 Olympic Games, her dream was within reach. But when COVID-19...

20 Feb 53min