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

#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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Avsnitt(41)

#40 Symptom connections in ME/CFS, Long Covid, EDS & Fibromyalgia - Orthostatic Intolerance, pain, PEM & MCAS

#40 Symptom connections in ME/CFS, Long Covid, EDS & Fibromyalgia - Orthostatic Intolerance, pain, PEM & MCAS

REVIEW: with Nancy Klimas, Peter Rowe, Lucinda Bateman, Todd Davenport & Theoharis Theoharides For decades, people living with ME/CFS, Long Covid, fibromyalgia, EDS and other complex chronic illnesses...

7 Aug 1h 4min

#39 ME/CFS & EDS bedbound for 8 years - Learning to Live Again with Lizzie and Amy Mooney

#39 ME/CFS & EDS bedbound for 8 years - Learning to Live Again with Lizzie and Amy Mooney

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...

24 Juli 52min

#38 Pacing is Power - POTS, PEM, EDS & MCAS strategies with Dr Clayton Powers

#38 Pacing is Power - POTS, PEM, EDS & MCAS strategies with Dr Clayton Powers

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...

10 Juli 59min

#37 ME/CFS breakthroughs: are treatments getting closer? With Action For ME, NIH, CODA, Bateman Horne Center &

#37 ME/CFS breakthroughs: are treatments getting closer? With Action For ME, NIH, CODA, Bateman Horne Center &

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...

26 Juni 59min

#36 My daughter’s Long Covid changed how I practice medicine with Dr Binita Kane

#36 My daughter’s Long Covid changed how I practice medicine with Dr Binita Kane

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 Cons...

13 Juni 58min

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

#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 Maj 1h 1min

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

#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 Maj 55min

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

#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 Maj 1h 13min

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