Myalgic Encephalomyelitis and Long COVID
Is there a connection between Myalgic Encephalomyelitis and Long COVID?
Researchers have estimated that approximately 80% of ME/CFS cases are infectious in origin, often following a virus such as Epstein Barr, West Nile or Influenza (ref). Some now believe that the SARS-CoV-2 virus, which causes Coronavirus disease (COVID-19), could also contribute to the development of Myalgic Encephalomyelitis.
Many individuals living with Long COVID report symptoms that resemble ME/CFS, most notably post-exertional malaise, cognitive dysfunction and persistent exhaustion. Evidence from previous viral outbreaks supports the current estimate that at least 10-30 percent of COVID-19 patients will go on to develop ME/CFS. If that's true for COVID-19 infection, up to 400,000 Canadians (or 80,000 British Columbians) could develop ME/CFS within the next year, almost doubling the number of people with ME/CFS in Canada.
Support for those living with Long COVID
The ME|FM Society of BC is pleased to support those living with Long COVID and other post-infectious illnesses, by referring to our Pacing resources and our ME/CFS medical education information for health care providers. We also have support groups that welcome Long COVID patients with potential/new ME/CFS diagnosis.
Selected published research
Here is a sample of the research linking ME/CFS with Long COVID.
Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)-A Systemic Review and Comparison of Clinical Presentation and Symptomatology - PubMed (nih.gov)
Frontiers | Will COVID-19 Lead to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? | Medicine (frontiersin.org)
Humility and Acceptance: Working Within Our Limits With Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - PubMed (nih.gov)
Insights from myalgic encephalomyelitis/chronic fatigue syndrome may help unravel the pathogenesis of postacute COVID-19 syndrome - PubMed (nih.gov)
Pediatric Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome: The Pediatric Infectious Disease Journal (lww.com)
For more research, please follow this search string to the NIH Pubmed
Database: myalgic encephalomyelitis AND covid - Search Results -
What are experts and researchers saying?
Dr. Anthony Fauci (US National Institute of Allergy and Infectious Diseases Director and US Coronavirus Task Force member) described in several interviews that people who are not recovering after contracting COVID-19 are showing symptoms “that are highly suggestive of myalgic encephalomyelitis and chronic fatigue syndrome”.
Canadian Institutes for Health Research (CIHR) hosted a webinar on ME/CFS and Long COVID with Dr. Nina Muirhead (UK). Dr. Muirhead comments that “ME clinicians who have been seeing ME patients for a long time can see the similarities in the Long COVID patients coming in” and that “we do expect a subset of long COVID patients to develop post viral ME”.
The NIH’s National Institute on Neurological Disorders and Stroke (NINDS) published an article outlining the overlapping symptoms between Post Acute Covid Syndrome (PACS) and ME/CFS, and the connection on its COVID-19 webpage.
Dr. Alain Moreau, the Director of ICanCME (a CIHR funded research network for ME/CFS in Canada), discussed in The Scientist that “with this very severe COVID-19 disease, where we’re now dealing with millions of people suffering from it worldwide, the question is not if [some] will develop ME/CFS—it’s how many.”
In the Media
Excellent articles about COVID “long haulers” developing ME/CFS in:
Long COVID & ME: Understanding the Connection - #MEAction Network
ME/CFS Clinician Coalition letter to US clinicians urging them to consider ME/CFS as a differential diagnosis for long haulers.