COFFI Consumer-researcher Online Seminar III - Where lived experience and science meet

“Post-exertional malaise and setbacks in chronic fatigue conditions: Cutting-edge neuroscience approach”

Tuesday, November 12th, 2024 (20:30 CET, 19:30 GMT, 12:30 MST)/ Wednesday, November 13th (06:30 AEDT).

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. We aim to explore 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.

Contributors 

	Professor Silje Reme Health Psychologist Head of the Mind-Body Laboratory, University of Oslo Steering Group Chair, Oslo Fatigue Network Professor Silje Reme is a clinical pain psychologist at Oslo University Hospital. Her research focuses on chronic pain treatment, chronic post-surgical pain prevention, chronic fatigue, stress, and work disability. https://www.mindbodylab.no/
	Dr Becca Kennedy Family Medicine Physician                Portland, Oregon Member of the Oslo Fatigue Network Dr. Becca Kennedy. She used an evidence-based neuroscience approach to chronic conditions while working at Kaiser Permanente, where she was the lead of the Long-COVID specialty group for the Northwest Kaiser region. Dr. Kennedy now runs her own clinic for chronic conditions using this neuroscience model of care. https://resilience-healthcare.com/
	Rachel Whitfield Leadership Trainer and Coach Bristol, UK Co-chair COFFI Consumer Advisory Committee COFFI 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, YouTube channels and her blog, helping many people find a path to recovery.  With a background in biochemistry, she is now a leadership trainer and coach.  https://mylongcovidjourney.wordpress.com/
	Fiona Symington Oxford, UK Member of the COFFI Consumer Advisory Committee 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. .She is now passionate about the science that helped her recover and which is helping many others find relief from a variety of chronic symptoms. https://www.livingproof.org.uk/me-cfs

Timetable

Time (UK)	Title	Presenter
19:30	Welcome and introduction	Rachel Whitfield
19:35	Experiences of post-exertional malaise	Fiona Symington, Rachel Whitfield
19:40	Scientific explanations	Prof Silje Reme
19:50	Resonance with lived experience	Fiona Symington, Rachel Whitfield
19:55	Approaches that may help post-exertional malaise	Dr. Becca Kennedy
20:05	Discussion and questions
20:15	Questions from the audience	All
20:30	Closing	Rachel Whitfield, Prof Silje Reme

For more information on the seminar or for details to register, please email coffi-collaborative@outlook.com

COFFI consortium conference held in Oslo, Norway.

In March 2024, 35  members from the COFFI consortium , along with external guests and early to mid-career researchers from the UK, USA, Norway, Netherlands, Australia, and France, gathered for an in-person conference at the Soria Moria Hotel in Voksenkollveien, Oslo, Norway. This long-anticipated event was initially planned for 2020 but was postponed to comply with global travel restrictions due to the COVID-19 pandemic.

The primary objective of the meeting was to develop a  comprehensive strategy for COFFI moving forwards, particularly in regard to:

•       Strategic research priorities

•       development of a COFFI-led PIFS case definition

•       Communication and dissemination of research findings

Below is a brief outline of the 3-day conference event:

Session 1	Current research and novel results among the COFFI partners – presentation of COFFI cohorts
Session 2	Organisation and work plan for the consumer advisory committee (CAC) and the early/mid-career researcher group (E/MCR) in COFFI
Session 3	Model of PIFS disease mechanisms, encompassing hypotheses regarding mechanistic relationships and suggested studies to test them.
Session 4	Research plan and priorities
Session 5	A plan for the development of COFFI with respect to intervention trials
Session 6	A strategy for communication and dissemination activities
Session 7	Summing up – meeting achievements and the road ahead

Outcomes:

To keep the discussion moving, further strategic development of COFFI will be undertaken in eight Project Working Groups (PWGs).

The PWGs for COFFI are funding, networking (communication and dissemination plan), developing a consensus case definition of PIFS (including Long-COVID), sharing data and specimens, advancing professional development, conducting candidate intervention trials in PIFS, and developing a protective plan. All PWG tasks are targeted for completion by the end of 2024.

Latest News: ESCMID Global 2024

We are proud to announce that Dr Carolina Sandler (Western Sydney University and University of New South Wales, Sydney, Australia) recently represented COFFI at the 34th annual congress of the European Society of Clinical Microbiology and Infectious Diseases ESCMID Global 2024 (formerly known as ECCMID) in Barcelona, Spain.

ESCMID Global has become the premier congress in the field of infection, featuring a comprehensive scientific and educational programme, and bringing together >15,000 colleagues from all over the world for scientific networking and exchange.

Dr Carolina Sandler presented a 1-hour Symposium titled “Post-infective fatigue syndrome after COVID: is it the same or different from post-infective fatigue syndrome after other infections?” on the 30th of April, 2024.

The 2024 ESCMID Scientific Programme can be found here:

https://www.eccmid.org/scientific-programme/2024-programme-live-sync