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

“Persistent symptoms after infection - what is going on in the brain?”

25th March, 2025

Tue 19.00 CET, 18.00  GMT, 14.00 EDT, 12.00 MDT; Wed 05.00  AEDT

Persistent symptoms are part of post-viral fatigue, ME/CFS, and the post-covid condition. This seminar considers the wide variety of symptoms and problems encountered by patients, looks at the overall explanation from physiological stress response, and then considers how approaches may help people with symptoms.

The seminar is aimed at health professionals, patients, practitioners, carers, and journalists

To attend, please register here

Background to COFFI

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 advises on COFFI’s research portfolio and promotes constructive public narrative between patients, researchers, and practitioners. These groups must work together to help people manage and recover from these conditions. Our previous COFFI Consumer-Research Seminar was on post-exertional malaise.

Contributors 

	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.
	Julie Black Scientific Advisor to the UK (and devolved) Governments. Scotland Julie Black, in her spare time, looks after three horses and rides around Scotland'shills. She developed the post covid-19 condition, was bedbound, and given a diagnosis of mast cell activation syndrome and postural orthostatic hypotension. Once understanding dysautonomia, she worked on how she was responding to various stressors, delineating her path to recovery.
	Vanessa Wilhelm Business Development Manager Scotland Vanessa Wilhelm developed long covid during the pandemic and has now almost fully recovered. She has since told her story on the Living Proof blog  and is active in various mind-body support groups. Vanessa has a background in policy research and currently works as a business development manager.
	Dr Anna Andreasson Assoc. professor in psychology, Stockholm University, Sweden Assoc. professor in clinical epidemiology at Karolinska Institutet, Sweden Guest Professor in Pain and Rehabilitation Medicine with focus on Psychoneuroimmunology, Linköping University, Sweden Anna Andreasson is a scientist examining how individuals perceive their own health from a psychoneuroimmunological perspective. Anna is especially interested in symptoms of sickness that arise when the immune system is activated, and how they may contribute to persistent symptoms such as fatigue, pain and symptoms seen in disorders of the gut-brain axis, such as irritable bowel syndrome.
	Maria Pedersen Paediatrician and postdoctoral fellow Oslo, Norway COFFI Researcher Maria Pedersen provides clinical care for  people with long-term fatigue.  Her doctorate concerned adolescents with fatigue after the Epstein-Barr virus; her current research is in treatments for adults with post-COVID-19 conditions. Maria is also part of the Norwegian National Competence Center for CFS/ME and the Paediatric Neurology Section at Oslo University Hospital.

Timetable

Time (UK)	Title	Presenter
18:00	Welcome and introduction	Rachel
18:05	Experiences of disturbing biological experiences	Julie and Vanessa
18:10	What is going on: the physiological stress response	Anna
18:20	Resonance with lived experience	Julie and Vanessa
18:25	Approaches that may help resolve symptoms	Maria
18:45	Discussion and questions
18:50	Questions from the audience	All
18.58	Closing	Rachel, Anna, Maria

To keep up to date with live events, please email coffi-collaborative@outlook.com

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”

Live Seminar was held on 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.

Watch the Seminar replay here on Youtube

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

To keep up to date with live events, 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.