Press Telebriefing: long COVID & ME

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When: Thursday, March 25, 12 p.m. PT / 3 p.m. ET 

Contact: Adriane Tillman, #MEAction, [email protected] 

MEDIA Advisory: A Panel of Experts to Explain How Long COVID Intersects with ME/CFS   

On March 25, #MEAction will host a telepresser featuring a panel of experts who are uniquely positioned to speak to how long COVID is being informed by the research on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS).  

Long haulers are overwhelmingly reporting symptoms that resemble ME/CFS at six months, and researchers are expecting the number of people with ME/CFS to more than double during the pandemic, which follows the pattern of past viral outbreaks. Dr. Anthony Fauci has warned repeatedly of the risk for COVID-19 patients to develop ME/CFS. 

Our panel of experts knew this was coming, and have dedicated a large part of their careers preparing for this moment. Since the beginning of the pandemic, ME/CFS researchers and clinicians expected that a worldwide viral outbreak would lead to a massive surge in chronic illnesses, including ME/CFS. 

  • NINDS Clinical Director, Dr. Avindra Nath, MD, has launched two intramural studies at the NIH to investigate long COVID, which follows on the heels of the institute’s intramural work investigating ME/CFS. Both studies are showing overlapping findings and symptoms. 
  • Dr. Lucinda Bateman, MD, founder of the Bateman Horne Center, is seeing overlapping symptoms in both her long COVID and ME/CFS patients.
  • Dr. Anthony Komaroff, MD oversees the Columbia University – Center for Solutions for ME/CFS Long-COVID study with the Bateman Horne Center. He chaired the Neurology section of the NIH Conference on Post-COVID health complications this past December. In his Frontiers article exploring how past viral outbreaks have led to surges of chronic illness, he estimates COVID-19 will double the number of people with ME/CFS.
  • A long hauler and person with ME/CFS will share their experiences of getting a virus and not recovering.     

The pandemic has put a spotlight on the many fractures in our society, and long COVID has exposed the lack of disability support, persistent stigma and underinvestment in infection-triggered chronic illnesses like ME/CFS. 

Who: 

  • Dr. Avindra Nath, MD., Intramural Clinical Director of the National Institute of Neurological Disorders and Stroke (NINDS)
  • Dr. Anthony Komaroff, MD, Simcox-Clifford-Higby Distinguished Professor of Medicine, Harvard Medical School, Senior Physician at Brigham and Women’s Hospital in Boston, and Editor-in-Chief of the Harvard Health Letter
  • Dr. Lucinda Bateman, MD, Founder and Medical Director of the Bateman Horne Center 
  • Long hauler, Jen, 53, former nurse
  • Person with ME, Ashanti Daniel, disabled RN

Background: 

Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a complex chronic disease that presents with symptoms in multiple body systems, and is predominately triggered by an infection. 

Chronic illness following viral outbreaks is not new, and has been well-documented to lead to ~12 percent rates of ME/CFS in subjects who contracted Epstein-Barr virus, Q Fever, and Ross River. A study on SARS showed that 27% of survivors met the criteria for CFS several years later. (See study links below.) 

Last December, a preprint study of long COVID was published in which 3,762 respondents from 56 countries reported their symptoms six months after contracting COVID-19. The main symptoms reported by long haulers resemble the defining symptoms of ME/CFS – fatigue, post-exertional malaise and cognitive dysfunction. 

The NIH has long neglected to invest in researching ME/CFS. It continues to remain the most underfunded disease in the NIH’s portfolio based on disease burden. It is imperative that the NIH fund ME/CFS research as part of its Post-Acute Sequelae of SARS-CoV-2 Infection (PASC) initiatives. 

About: #MEAction is an international advocacy organization made up of people with ME/CFS, family members and allies. We are fighting for recognition, education, and research so that, one day, all people with ME will have support and access to compassionate and effective care. Learn more: www.meaction.net

Links:

Read more on the connection between long COVID and ME/CFS: https://www.meaction.net/long-covid-me-understanding-the-connection/

Studies and articles on post-viral illness: 

Preprint survey on characterization of long COVID:  

Read about the disease burden and historic underinvestment of ME/CFS: 

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