Mel Brooke: Psoriatic Arthritis & PRP-NeTT

Mel Brooke joins Debbie and Katy to share her decades‑long journey with psoriasis, psoriatic arthritis, and later fibromyalgia and how lived experience led her into clinical research and ultimately to co‑founding PRP-NeTT, the UK Rheumatology Patient Research Partner Network and think tank. She discusses fatigue in all its forms, lifestyle experimentation, the complexity of comorbidities, and why patient voices must shape research. Mel explains how PRP-NeTT emerged from a national survey revealing gaps in patient involvement, and how mentoring, orientation, and shared decision‑making can transform research culture. Key topics: The impact of poor sleep and the different “types” of fatigue Early psoriasis, psoriatic arthritis diagnosis, and navigating denial Lifestyle interventions: Mediterranean diet, vegan reset, symptom diaries, trigger mapping Fibromyalgia as a comorbidity and the difficulty of distinguishing symptoms Shared decision‑making and safe experimentation (e.g., turmeric and blood‑thinning interactions)Mel’s transition from clinical research professional to patient research partner GRAPPA’s work on patient‑reported outcomes and recognising fatigue as a major burden The creation of PRP-Nett: survey findings, think‑tank model, mentoring, and improving patient involvement The importance of disseminating research results back to patients How people can get involved in research beyond clinical trials Key words: psoriatic arthritis, psoriasis, fatigue crushes, sleep quality, fibromyalgia, neuroinflammation, lifestyle interventions, Mediterranean diet, trigger foods, symptom diary, shared decision‑making, patient research partner, GRAPPA, patient‑reported outcomes, PRP-NeTT, advocacy, peer support, rheumatology research, NIHR standards, mentoring, research involvement pathways Resources mentioned: ⁠PRP-neTT (UK Rheumatology Patient Research Partner Network)⁠ Think tank, mentoring, and reflections on patient involvement ⁠https://prpnettt.substack.com/⁠PsA HQ website 'Guide to becoming a PRP' and ''Onboarding PRPs: A Simplified Guide for Research Teams” ⁠https://psazzgroup.wixsite.com/psa-hq... Group for Research and Assessment of Psoriasis and Psoriatic Arthritis International research body working on patient‑reported outcomes ⁠https://www.grappanetwork.org/⁠GRAPPA research project ⁠ Patient outcome measures⁠  NIHR:UK standards for patient involvement in research ⁠https://www.nihr.ac.uk/⁠Inflammatory Arthritis UK: Research page for involvement opportunities ⁠https://inflammatoryarthritis.org/res... Connect with Mel: Instagram: @PSA_HQ Connect with IAUK Website: inflammatoryarthritis.org Newsletter: Sign up for updates and new episodes Social: Facebook, Instagram, BlueSky, LinkedIn YouTube: Watch full episodes, subscribe, and share Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys, and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content. For more information, head to ⁠https://inflammatoryarthritis.org/