IACFS/ME New York Research Conference Report

September 14, 2020

Charlotte Stephens, Research Correspondent, ME Association

Charlotte Stephens

The International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME) held a virtual scientific conference on August 21st 2020.

Over 200 people attended, including researchers, clinicians, patients and carers.

There were some interesting talks and plenty of opportunity for Q and A’s and some great discussions.

Covid-19 and the effects of Post-Covid featured prominently in the conference but we also heard new research being presented about ME/CFS.

If you are a member of the ME Association, please note that this conference report will be included as a supplement in the next (November) issue of ME Essential magazine.

Who are IACFS/ME?

IACFS/ME is an international, nonprofit organization of clinicians, scientists, professionals, patients, and advocates dedicated to the care and research of people affected by myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), fibromyalgia, and other related conditions.

They publish a peer-reviewed medical journal (Fatigue: Biomedicine, Health, and Behavior), organize international conferences, educate professionals and the public about ME/CFS, and promote science-based care, research, and public health policies. To find out more, visit their website.

What is in the report?

We feature a summary of each presentation made at the conference:

1. Does Chronic Fatigue Syndrome Follow Acute SARS (severe acute respiratory syndrome) Disease? If so, why?
Dr Harvey Moldofsky (University of Toronto)

2. What Do We Know About Risk Factors for Developing COVID-19 and the Aftermath of this Disease?
Professor Leonard Jason (DePaul University, Chicago)

3. Understanding Susceptibility or Resilience to Chronic Effects of COVID-19 and Deepening Our Understanding of ME/CFS
Dr. Sadie Whittaker (Solve ME Initiative)

4. Conversion of COVID-19 Patients to People with ME/CFS
Dr. Ronald Tompkins (Open Medicine Foundation, Harvard University)

5. The Impact of COVID-19 on the Risk and Prognosis of ME/CFS
Dr. Luis Nacul (ME Biobank, London School of Hygiene and Tropical Medicine)

6. Immune Dysregulation with Deviated B Cell Receptor Repertoire in ME/CFS
Dr. Wakiro Sato (National Centre of Neurology and Psychiatry, Japan)

7. Defective Energy Metabolism in ME/CFS
Dr. Ina Katrine Nitschke Pettersen (University of Bergen, Norway)

8. Why Patients Improve. Why They Get Worse. Model vs. Data in ME/CFS
Dr. Fred Friedberg (Stony Brook University, USA)

9. Heart Rate Variability in Exercise-Induced Postural Tachycardia (START) and POTS
Dr. James Baraniuk (Georgetown University, USA)

10. The Effect of Self-Management Group Program on Health Status, Fatigue Severity, and Self-Efficacy in Patients with ME/CFS
Dr. Violetta Renesca (Nova Southeastern Unviersity, USA)

11. The Benefits of Oral Rehydration on Orthostatic Intolerance in Children with Postural Tachycardia
Dr Marvin Medow (New York Medical College, USA)

12. Low Dose Naltrexone in ME/CFS and FM – the Vancouver Experience
Dr. Rhonda Jane McKay (British Colombia Woman’s Hospital and Health Centre, Canada)

13. Health Care Responsibility and Compassion – Visiting the Housebound Patient Severely Affected by ME/CFS
Mrs. Caroline Kingdon (London School of Hygiene and Tropical Medicine)

14. mapMECFS: A Myalgic Encephalomyelitis Focused Data Portal Supporting Data Discovery Across Multiple Biological Discipline
Mr. Mathew Schu, Ph.D. (RTI International, USA)

15. Longitudinal Assessment of Clinical Severity Indicators and Determinants of Quality of Life in People with ME/CFS: A Prospective Cohort Study in the UK ME/CFS Biobank (UKMEB)
Dr. Eliana Lacerda (London School of Hygiene and Tropical Medicine)

16. ME/CFS and Autoimmune Associated Small-Fiber Neuropathy
Mr. Ryan Whelan (Simmaron Research, USA)

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