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Long CoViD or ME-CFS ?

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Dutch Josh View Drop Down
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    Posted: January 16 2022 at 9:47am

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Even after the World Health Organization declares the end of the global pandemic, COVID-19 will continue to cast a long shadow. By some estimates, nearly a third of people with a symptomatic infection still experience debilitating symptoms months later. Much about Post-Acute Sequelae of SARS-CoV-2 infection (PASC), the clinical term for what is commonly referred to as Long (or Long-haul) COVID, is unknown. However, one intriguing clue can be found in its similarity to myalgic encephalomyelitis, a disease also known as chronic fatigue syndrome or ME/CFS.

Mady Hornig, a Columbia Mailman School psychiatrist renowned for her research on ME/CFS, joined Walter J. Koroshetz, director of the National Institute of Neurological Disorders and Stroke (NINDS), for a late June panel discussion on post-acute COVID. The panel was part of WNYC Radio’s 2021 Health Convening, hosted by Nsikan Akpan, health and science editor at New York Public Radio.

Individuals with PASC/Long COVID rarely continue to test positive for an active infection (at least by standard tests) but continue to experience a constellation of symptoms, from fatigue to trouble with cognition and chest and abdominal pain. While the condition is most common in those with severe COVID, it is also seen in 19 percent of those with asymptomatic infections, according to an analysis by FAIR Health, although studies vary widely. But how the virus triggers these symptoms and why it happens in some people not others is so far unknown.

“We’re really dealing with a mystery right now,” said Koroshetz. Yet the similarities of Long COVID to ME/CFS are striking, starting with a significant overlap in the symptoms, notably fatigue, unrefreshing sleep or “post-exertional malaise”—a general sense of being unwell after even minor physical or cognitive exertion affecting a majority of those with long COVID, along with high rates of problems with memory and attention (“brain fog”). Pain is another feature in common. And the onset of both Long COVID and up to 75 percent of ME/CFS cases can be traced to a viral infection. Indeed, one might easily ask: could Long COVID and ME/CFS be one and the same?

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Some of the symptoms are consistent with what we know about COVID-19. The 39 per cent of long COVID cases that have shortness of breath could be linked to the damage the coronavirus can cause to lungs, while a third of people with long COVID still experience the loss of smell common with COVID-19 infection.

However, the most common long COVID symptom reported is fatigue, which has made some question whether the condition could in fact be the same as chronic fatigue syndrome (CFS).

Also referred to as myalgic encephalomyelitis (ME), CFS is a long-term condition that makes people experience extreme fatigue, particularly after exercise, in addition to problems sleeping, bodily pain and confusion known as brain fog. Scientists still don’t know what causes ME/CFS, but many patients’ onset of the condition follows infection with a virus or bacteria.

Until now, experts haven’t been able to confidently say whether ME/CFS is a part of long COVID. But a new study, by researchers at Icahn School of Medicine at Mount Sinai in New York, has tested 41 patients against ME/CFS diagnostic criteria.

Of the group, 46 per cent had four or more symptoms of ME/CFS and had experienced a substantial impact to their lives as a result of fatigue. A further 13 long COVID patients met the criteria but were excluded on account of having a large BMI or a cardiac disease.

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The term post-viral fatigue syndrome (PVFS) is used to describe CFS-like symptoms that occur after a viral infection.[7] A recent review found Epstein-Barr virus (EBV) antibody activity to be higher in patients with CFS, and that a subset of patients with CFS were likely to have increased EBV activity compared to controls.[54] Viral infection is a significant risk factor for CFS, with one study finding 22% of people with EBV experience fatigue six months later, and 9% having strictly defined CFS.[55] A systematic review found that fatigue severity was the main predictor of prognosis in CFS, and did not identify psychological factors linked to prognosis.[56] One review found risk factors for developing CFS after mononucleosis, dengue fever or the bacterial infection Q-fever include longer bed-rest during the illness, poorer pre-illness physical fitness, attributing symptoms to physical illness, belief that a long recovery time is needed, as well as pre-infection distress and fatigue. The same review found biological factors such as CD4 and CD8 activation and liver inflammation are predictors of sub-acute fatigue, but not CFS,[57] however these findings are not generally accepted due to the use of the Oxford criteria in selecting patients. The CDC does not recognize attribution of symptoms as a risk factor.[6]

A study comparing diagnostic labels found that people labelled with ME had the worst prognosis, while those with PVFS had the best. Whether this is due to those with more severe or longer lasting symptoms results in a label with the description of ME, or if being labelled with ME adversely causes a more severe or prolonged illness is unclear.[58]

DJ Post viral problems are known to exist for decades. But what is causing it is-yet-unknown. Maybe we may learn more from Long CoViD ? 

We cannot solve our problems with the same thinking we used when we created them.
~Albert Einstein
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