2022 IACFS/ME Conference – Days 1 & 2

IACFS/ME 2022 Virtual Medical and Scientific Conference July  27 – 30, 2022 

The annual International Association of CFS/ME (IACFS/ME) conference opened this week with an introduction by its Director, Professor Fred Friedberg. 58 speakers, 20 posters, almost 300 attendees, many early-stage researchers, are due to ‘attend’ the conference. The growth in numbers attending reflects a growing interest in ME/CFS among scientists and health professionals internationally.

The conference focuses on the biomedical, behavioural, and public health aspects of ME/CFS and associated comorbidities with a portion of the conference to be devoted to COVID-19 and its relevance to ME/CFS research and clinical care.

Day 1 (27 July 2022) saw a range of speakers, of note was a talk by Lauren Stiles of Stonybrook University and Dysautonomia International on the high prevalence of postural orthostatic intolerance (POTs) among both those affected by ME/CFS and Long-Covid, a detailed explanation of the many tests available to test for dysautonomia and possible treatment or support strategies. Autonomic dysregulation has featured across a number of speakers’ presentations, as has neurological inflammation.

Amy Mooney gave an informative talk (Occupational and physical therapy: increasing function and quality of life for ME/CFS patients) about how Occupational Therapists (OTs) could improve the quality of life of people living with ME/CFS – helping patients live better lives with the condition is often a neglected area, as research tends to take the headlines. In a similar vein, Melinda Maxwell and group, talked more about how doctors and allied health professionals, such as OTs and physiotherapists, could help people living with ME/CFS to manage symptoms and navigate health care.

Day 2 (28 July 2022) continued in a similar vein, with many great talks and presentations, in addition to a virtual poster room for junior researchers to present their work and answer questions about their projects.

A panel of experts, including Dr. Luis Nacul of the London School of Hygiene and Tropical Medicine Cure ME/CFS group and Medical Director of the Complex Chronic Diseases Program at British Columbia Women’s Hospital in Vancouver, Canada, spoke about how to induce and identify characteristic ME/CFS symptoms, such as pain, brain-fog, post-exertional malaise, in both research and clinical practice (Provocative Manoeuvers: Methods to Induce Symptomatic Features of ME/CFS). There was a great deal of consensus from the panel that simple office tests such as a standing-sitting test, and more complex exercise stress tests, could differentiate ME/CFS patients from healthy controls.

Another important presentation (Pathophysiology of exercise intolerance in ME/CFS & long COVID) was given by Dr. David Systrom, an MD at Brigham and Women’s Hospital pulmonary and critical care and a faculty member at Harvard Medical School. Dr. Systrom has used invasive exercise stress tests, involving placing catheter monitoring devices into major veins and arteries in the body, including directly into the heart via a vein, to monitor many physiologic and metabolic changes during exercise, such as Oxygen levels, and heart chamber filling, has been able to note a consistent pattern of problems in both ME/CFS and Long-Covid patients, including:

  • Lower mean peak VO2 max in some patients – indicating a problem with energy production. VO2 Max is the maximum amount of oxygen that your body can use during exercise. It’s measured in millilitres of oxygen taken in and used, per kilogram of body mass, per minute, and is considered one of the best measurements of overall fitness.  
  • Pre-load failure – the heart not refilling enough to meet demand during exercise.
  • Small fibre neuropathy – damage to very small autonomic/sensory nerve fibres in the skin or elsewhere indicating possible lack of blood flow due to shunting away from muscles and skin to maintain adequate blood flow to vital organs.
  • Activation of inflammasomes by TRAIL – detectable chronic inflammatory signatures

Dr. Systrom believes an acquired mitochondrial dysfunction may be responsible, most likely induced by infections and post-infectious immune responses – meaning there is an energy deficit that can be seen in the cardiovascular system and in the autonomic system, impacting how patients respond to exercise. Dr. Systrom says post-exertional malaise (PEM) is identifiable in the research clinic using an exercise stress test. He believes off-shelf drugs, such as Pyridostigmine, may help a subset of patients.

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