Coffi Consumer Dialogue “Post-exertional malaise and setbacks in chronic fatigue conditions"

“Post-exertional malaise and setbacks in chronic fatigue conditions: Cutting-edge neuroscience approach” COFFI Consumer dialogues People with chronic fatigue conditions can experience recurrence of symptoms, often precipitated by physical, emotional or cognitive exertion. Termed post-exertional malaise (PEM), this can pose a big challenge to full recovery. This seminar explores explanations and management approaches for post-exertional malaise and setbacks in chronic fatigue conditions in a dialogue between research scientists, clinicians and consumers. COFFI is a global research collaborative dedicated to research to help explain, treat and manage fatigue and persistent somatic symptoms following infection. The COFFI Consumer Advisory Group advise on COFFI’s research portfolio, and promote constructive public narrative around helping patients, researchers and practitioners work together for managing and recovering from these conditions. Professor Silje Reme is a clinical pain psychologist at Oslo University Hospital. Dr. Becca Kennedy. She used an evidence-based neuroscience approach to chronic conditions while working at Kaiser Permanente. Rachel Whitfield developed long covid during the pandemic and has now fully recovered. She has since told her story multiple times to the BBC and ITV as well as a variety of podcasts. Fiona Symington lived with M.E/CFS for 14 years, and chronic pain for 25 years before recovering completely using mind-body medicine five years ago. 00:00 Welcome 1:47 Some of best scientists international collaborating at COFFI 2:04 Patients working with scientists 3:11 introducing the speakers 5:15 PEM after 36 hours delay and cumulative PEM 6:55 14 yrs of PEM 7:50 Fiona tried to push through 8:10 What PEM felt like 9:33 Knowing that however bad it gets doctors wouldn’t know what to do 10:55 The scientific perspective 24:06 Is PEM permanent ? 25:22 How Becca helps patients recover 36:12 ‘Fear’ is a healthy response 43:03 Pacing vs graded exposure 46:06 How to build safety before increasing activity 47:22 Overcoming barriers to engaging with the approach 50:47 When dreaming of being well feels too hard 54:07 The brain : better safe than sorry 56:58 Threat response vs challenge response 59:11 A paradigm shift not easy for doctors to grasp 1:00:38 Closing thoughts