For Medical Professionals

The U.S. ME/CFS Clinician's Coalition site has professional information about clinical management, medical education and resources. "The U.S. ME/CFS Clinician Coalition was formed in 2018 by a group of American ME/CFS expert clinicians who have collectively spent hundreds of years treating many thousands of ME/CFS patients. Founding members have served on the expert panel that authored the National Academy of Medicine’s 2015 report on ME/CFS, have authored primers on clinical management, have contributed to the CDC’s medical education initiatives, and have served on the Health and Human Services’ CFS Advisory Committee before it was sunsetted in 2018. Many founding members have been and continue to be actively involved in ME/CFS research."

For Physical Therapists: Myalgic Encephalomyelitis or Chronic Fatigue Syndrome - Physiopedia

Post-COVID Fatigue, Exercise Intolerance Signal ME/CFS "The major finding is that ME/CFS is indeed part of the spectrum of the post-COVID syndrome and very similar to the ME/CFS we know after other infectious triggers," senior author Carmen Scheibenbogen, MD, acting director of the Institute for Medical Immunology at the Charité University Medicine Campus Virchow-Klinikum, Berlin, Germany

From the July 2021 Medical Board of California News

"Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID:

What Every Physician Needs to Know

By The Myalgic Encephalomyelitis Action Network (MEAction), with special contribution from Jennifer Curtin, MD, Center for Complex Diseases, Mountain View, CA

Body: MEAction urges physicians to consider myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in the differential diagnosis of long COVID patients. For those exhibiting post-exertional malaise, graded exercise programs may be harmful. This article provides information on ME/CFS and COVID long-haulers showing symptoms of ME/CFS.

Post-Acute Sequelae of SARS-CoV-2 Infection and ME/CFS

Many COVID-19 survivors are experiencing significant symptoms persisting months beyond resolution of the acute viral infection. These symptoms involve a wide range of organ systems: cardiovascular, pulmonary, neurological, renal, gastrointestinal, immune, and more. To address this emerging issue, the National Institutes of Health (NIH) held the Post-Acute Sequelae of COVID-19 workshop and was awarded $1.15 billion to study what is now referred to as post-acute sequelae of SARS-CoV-2 infection (PASC), or simply long COVID.

A recent survey of nearly 4,000 self-described COVID long-haulers indicates that 78 percent are experiencing persistent fatigue, 72 percent are experiencing post-exertional malaise, and 55 percent are experiencing cognitive dysfunction six months or longer after acute infection. These symptoms are the three most common among surveyed long-haulers, and all three are primary diagnostic criteria for ME/CFS.

What is ME/CFS?

Referred to by the Centers of Disease Control and Prevention (CDC) as America’s Hidden Health Crisis, ME/CFS is a chronic, systemic disease that is associated with neurological, immunological, and energy metabolism impairment. The National Academy of Medicine published a report in 2015 where a panel of experts reviewed over 9,000 studies and concluded that ME/CFS is a multi-system disease often preceded by an immune challenge, most frequently an infection. The hallmark symptom of ME/CFS is post-exertional malaise: a significant worsening of fatigue and associated symptoms after physical or cognitive exertion. Other symptoms include a substantial impairment in function, profound exhaustion, unrefreshing sleep, cognitive impairment, orthostatic intolerance, widespread pain, flu-like symptoms and sensory hypersensitivities.

Pre-COVID-19 data indicates ME/CFS affects an estimated 1.5 million Americans, of whom, 75 percent are so severely affected they are unable to work full time, and 25 percent are homebound or bedridden. The direct medical cost and indirect cost to society of ME/CFS in the U.S., based on study data published in 2008 and recently updated to present day population and economics, is $36-51 billion annually.

COVID-19 Might Lead to a Tripling of ME/CFS Cases

Rates of development of ME/CFS after infection with SARS, MERS, West Nile virus, or EBV range from 5 percent to 27 percent. A recent paper by the US ME/CFS Clinician Coalition, an organization representing the collective clinical expertise on ME/CFS in the U.S., estimates that 10 percent of those stricken with COVID-19 will develop ME/CFS. With the number of COVID-19 cases in the U.S. exceeding 30 million, 10 percent developing ME/CFS would result in a tripling of the existing ME/CFS prevalence in the U.S. alone. The numbers are significant when applied to the number of COVID-19 survivors globally.

Standard Graded Exercise Programs can be Harmful for ME/CFS Patients

Evidence shows COVID long-haulers with ME/CFS symptoms - specifically, post-exertional malaise - should consider against enrolling in graded exercise therapies, which may be harmful to people with ME/CFS. MEAction encourages long-haulers to pace their activities and build in regular rest periods.

There is extensive metabolic and molecular evidence that people with ME/CFS experience physiological abnormalities in their response to exercise. Results from two-day cardiopulmonary exercise tests (CPET) and a multi-center invasive CPET study provide additional evidence of an abnormal response to exercise in patients with ME/CFS and confirm that the symptoms are not the result of deconditioning, but instead suggestive of maldistributed blood flow and reduced tissue oxygen extraction during upright exertion, possibly related to the small fiber neuropathy found in nearly 30 percent of study participants. Exertion beyond a patient’s tolerance can lead to post-exertional malaise and a long-term worsening of symptoms. A recent large-scale survey found that 80 percent of people with ME/CFS found no benefit or significantly worsened with upright graded exercise regimens.

Treatment to Consider for Long-Haulers who Might have ME/CFS

The U.S. ME/CFS Clinician Coalition has recently issued a letter titled Post-COVID ‘Long-Haulers’ and ME/CFS emphasizing the importance of considering ME/CFS in the differential diagnosis of long COVID patients. The Coalition provides information to help diagnose ME/CFS and its common comorbidities, and manage the condition in different age groups."

Copied from https://www.mbc.ca.gov/News/Newsletter/2021-July.aspx ,Volume 157, July 2021 Medical Board of California News