The prolonged aftereffects of coronavirus are so similar to chronic fatigue syndrome, a medical condition that leaves people unable to take on physically and mentally demanding tasks and often follows a viral illness, that some researchers have begun wondering if it is a post-viral illness.
According to a July 3 CDC Morbidity and Mortality Weekly Report, fatigue was reported in more than two-thirds of people (69%) who tested positive for coronavirus.
Medical researchers are planning studies on this much-misunderstood and underdiagnosed phenomenon as more and more COVID-19 survivors report symptoms of relentless fatigue.
What Is Chronic Fatigue Syndrome?
According to an Institute of Medicine (IOM) report published in 2015, an estimated 836,000 to 2.5 million Americans suffer from ME/CFS, but most of them have not been diagnosed.
— Chronic Fatigue Syndrome (@SyndromeChronic) May 10, 2020
Chronic fatigue syndrome (ME/CFS), also referred to as myalgic encephalomyelitis, is described by the CDC as a “serious, long-term illness that affects many body systems” that causes severe fatigue and sleep problems, as well as thinking and concentration issues, pain and dizziness. According to a 2015 Institute of Medicine report, roughly 836,000-2.5 million Americans may have diagnosed or undiagnosed ME/CFS.
According to the CDC, people who are diagnosed with CFS typically have the following three core symptoms:
Greatly lowered ability to do activities that were usual before the illness. This drop in activity level occurs along with fatigue and must last six months or longer.
Worsening of ME/CFS symptoms after physical or mental activity that would not have caused a problem before illness. This is known as post-exertional malaise (PEM).
They must also exhibit “problems with thinking and memory” and something called orthostatic intolerance (symptoms that get worse when standing or sitting upright). Additional symptoms that people with ME/CFS can experience include aches, muscle and joint pain, headaches, tender neck and armpit lymph nodes, frequent sore throats, digestive issues, cills and night sweats, allergies and food sensitivities, muscle weakness, shortness of breath and irregular heartbeat.
People with ME/CFS often describe it as a debilitating disease that gets worse when they try to pursue the activities they were able to do before.
Sanna Stella, an Oak Park resident and mom of three, was once an interior designer. However, she told Medical Xpress that after she was diagnosed with ME/CFS any walk longer than half a block would put her in a wheelchair. It started when she caught a “bug” during the 2013 Thanksgiving, but still experienced exhaustion and fatigue even after medications improved her symptoms.
“It makes no sense. I’m not coughing anymore. I don’t have a fever,” she told Medical Xpress. “That’s why you keep pushing because as soon as you feel like you can move a little, you start moving as much as you possibly can, and then you totally crash.”
I couldn’t even sit at the table and eat a meal, so just to think about doing exercises, there just wasn’t any energy for that. When I crash, it’s really, really low (like having to wear a diaper because she can’t use the bathroom on her own), but then during my good times, I can do stuff around the house … some cooking, some cleaning. we’re saying: ‘Your whole life can change if you get this.’
What Does ME/CFS Have To Do With Coronavirus?
12 reasons that <some> doctors disbelieve patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS
— Dr Mark Guthridge (@Dr_M_Guthridge) April 13, 2020
ME/CFS is being increasingly reviewed as a potential source for understanding the prolonged recovery some people experience after they test positive for coronavirus.
In the National Institutes of Health, a medical hypothesis proposed by several medical researchers, plans to examine whether CFS is in fact a post-viral syndrome. According to the researchers’ hypotheis, “We are writing to highlight the potential for a post-viral syndrome to manifest following COVID-19 infection as previously reported following Severe Acute Respiratory Syndrome (SARS) infection, also a coronavirus . After the acute SARS episode some patients, many of whom were healthcare workers went on to develop a Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) – like illness which nearly 20 months on prevented them returning to work.”
Anthony Fauci, a member of the White House Coronavirus Task Force and National Institute of Allergy and Infectious Diseases (NIAD) director since 1984, said that he has noticed many of the sumptoms coronavirus patients describe are “highly suggestive” of ME/CFS, Statnews reported. “This is something we really need ot look at,” he said.
On July 9, Fauci said that it is possible COVID-19 could have a potential post-viral syndrome at an International AIDS Society’s news conference:
There may very well be a post-viral syndrome associated with COVID-19. If you look anecdotally, there is no question that there are a considerable number of individuals who have a post-viral syndrome that in many respects incapacitates them for weeks and weeks following so-called recovery.
A study conducted in 2015 looked at whether the fatigue sensation caused by “peripheral viral infections” is caused by neuroinflammation. Researchers concluded that influenza was found to cause acute neurological inflammation, which was a common symptom related to infections and fatigue. “These observations suggest that neuroinflammation is involved in symptoms of viral infection and/or chronic fatigue syndrome,” they found.
It is possible that even if ME/CFS is not a post-viral syndrome associated with COVID-19, it possible that with more research, the source of long-term fatigue after COVID-19 is no longer detectable with a nasal swab suggests that treating it in a similar way may lead to quicker recovery for patients.
As Statnews reported, “These welcome research efforts (into ME/CFS) could also shed light on the pathophysiological processes involved in post-Covid syndrome.”
How Can You Recover From ME/CFS
Watching patients in the UK with post-viral fatigue, #longcovid or ME/CFS being told to exercise is breaking my heart. Exercise is contraindicted in these conditions, exertion worsens symptoms & the research used to justify it is dangerous garbage. https://t.co/kyhhCgnaTB
— Brian Vastag (@brianvastag) July 17, 2020
A United Kingdom guide to recovery includes establishing an activity baseline, approaching physical activity gradually, developing a daily program with sleep times, deep relaxation (such as soft music and meditation) and keeping a mental and physical activity journal.
In a 2013 study, 24% of 25 ME/CFS patients described themselves as recovered after receiving CBT and 23% of 96 patients reported immediatlely being cured after CBT therapy.
A Statnews editorial noted that the old standard of advice, psychotherapy and exercise as treatments, did not worked particularly well for him. According to Statnews’ David Tuller, that has been supported by emerging medical reseach: “Given the core symptom of post-exertional malaise, the recommendation for graded exercise is increasingly recognized as harmful, not helpful. According to multiple surveys, many ME/CFS patients report serious deterioration after a graded exercise approach.”