Thread by @patientled

1st day of Research Presentations at the 15th IACFS/ME Conference: Fred Friedberg, President of IACFS/ME, welcomed participants and discussed the non-profit organization’s missions: promoting science-based care, publishing peer-reviewed papers, hosting conferences on #MECFS.

Dr. David Systrom, pulmonologist, presented on the pathophysiology of exercise intolerance in ME/CFS & Long COVID.
iacfsme.org/2022-conferenc… #CovidIsNotOver #MECFS #LongCovid #iacfsme #COVID19 @itsbodypolitic

Dr. Systrom said that in iCPET testing, ME/CFS sufferers are often not too far from “normal” re: peak oxygen levels. However, in many ME/CFS and Long Covid patients, there are patterns of preload failure, which contribute to exertional intolerance. #LongCovid #CovidIsNotOver

In many ME/CFS patients, skin biopsies demonstrate small-fiber neuropathy. Also, left-to-right shunting is hypothesized to be associated with orthostatic intolerance, ME/CFS and exercise intolerance. #CovidIsNotOver #MECFS #LongCovid #iacfsme #COVID19

Pro-inflammatory cytokine activation disproportionately seen with ME/CFS patients (compared to controls). Unexplained exertional intolerance may be associated with impaired systemic oxygen extraction. #MECFS #LongCovid #COVID19 #CovidIsNotOver

Dr. Systrom also discussed a theory being tested regarding poor systemic oxygen extraction. It may also be related to intrinsic limb skeletal muscle mitochondrial dysfunction in ME/CFS patients. #MECFS #LongCovid #COVID19

In one (currently) unpublished study, data showed preload failure is virtually ubiquitous among POTS, MECFS and small fiber neuropathy patients. #MECFS #LongCovid #COVID19

Dr. Systrom said: there are data showing, post-infection, disrupted mitochondrial function (secondary, non-inherited) in ME/CFS. #MECFS #LongCovid #COVID19 #CovidIsNotOver

2nd session of the day, in which panelists describe provocation designs to induce #MECFS symptoms in a clinical setting for study :“Provocative Maneuvers: Methods to Induce Symptomatic Features of ME/CFS” has Rochelle Joslyn PhD, moderating. #iacfsme #LongCovid

Following their presentations, J. Mark VanNess, PhD, Peter Rowe, MD, Lucinda Bateman, MD, Dane B. Cook, PhD, Alain Moreau, PhD & Luis Nacul, MD, MSc, Ph. took questions, discussing -among other topics- the ethics of these #MECFS tests, which can worsen health. #iacfsme

Dr Alain Moreau spoke on a longitudinal approach, where patients are visited at home, to measure symptoms of #MECFS in bedbound or home-bound patients, who have been unable to take part in clinical studies or tests, due to the severity of their mobility issues or other symptoms.

Dr. Nacul on the importance of provocative tests: the purpose of non-invasive tests (in so much as possible) is to explore the mechanism of disease, develop treatments & validate patients’ experiences. #MECFS #LongCovid

Dr. Peter Rowe spoke on the importance of providing saline, following provocation tests to #MECFS patients & considering their symptoms. Dr. Mark VanNess adds that many patients think the tests are worth it, as they contribute to knowledge of pathophysiology of the illness.

Dr. Lucinda Bateman emphasizes that orthostatic testing (such as NASA tilt test) is a measure of orthostatic intolerance, not disease severity. One aspect of the illness is being measured, not the global illness. #MECFS #LongCovid