Is the MECFS Community About to get Larger?
According to the latest data from the WHO, there are now 294,110 total confirmed cases of the novel Corona virus, COVID-19 (as of March 22 2020). Stay up to date with these numbers at the WHO site.
The ME/CFS condition is known to be triggered by viral infections. It is reasonable to expect a spike in new ME/CFS diagnoses in those that contract COVID19 and recover. In the next year, we may see our community grow in numbers. Is the medical community ready for an influx of new ME/CFS patients?
Known Viral Triggers of ME/CFS
The idea of a viral trigger of ME/CFS has been known since the very beginning. Look no further than the initial outbreak cases in Incline Village and at the Royal Free Hospital. If you aren’t familiar with the history of ME/CFS, please read up on it HERE. Or better yet, read the excellent, thorough historical account Osler’s Web by Hillary Johnson:
We have observational studies that further support the viral etiology of ME/CFS. A study of 253 patients who were diagnosed with either Epstein-Barr virus, Coxiella burnetii (Q fever), or Ross River virus (epidemic polyarthritis) were followed over 1 year. After the acute infection period, there were persistent symptoms in 12% of the total participants at six months. Symptoms included disabling fatigue, musculoskeletal pain, neurocognitive problems, and mood disturbances. Of those with lasting symptoms, 11% met the diagnostic criteria for chronic fatigue syndrome.
The mosquito vector West Nile Virus affected 3 million in the United States. Since that initial spread in 2002, studies have found that up to 31% of those infected developed conditions that meet diagnostic criteria for ME/CFS.
In 2006, 10,675 cases of the Ebola virus hit the West African country of Liberia. Symptoms similar to ME/CFS were found in those who survived the virus. Coined post-Ebola syndrome, studies showed that 90% of survivors experienced post-Ebola syndrome. Reported symptoms included eye problems, headache, sleep problems, fatigue, abdominal pain, chest pain, and joint pain.
Lessons from SARS
Coronaviruses (CoV’s) are a class of related viruses. SARS-CoV-2, is the virus causing COVID-19. It is a similar virus to the severe acute respiratory syndrome (SARS-CoV) first reported in China in 2003. Middle-East respiratory syndrome (MERS) is another such coronavirus identified in 2012. Studies from MERS and SARS survivors may provide clues as to what COVID-19 survivors can expect.
A large Canadian cohort (144) of post-infection SARS patients showed that 82% reported ongoing post-viral symptoms. A small 2001 follow-up study sampled 22 of the 144 and compared this group to healthy controls. The 22 post-SARS subjects reported near-daily fatigue, difficulty sleeping, muscle pain, and weakness. They also were found to have more depressive symptoms and poor sleep quality in a sleep study. Most of the subjects met diagnostic criteria for Fibromyalgia.
A larger study of 369 Chinese SARS survivors reported that 50% experienced chronic fatigue up to 3 years after the initial infection. A study of 148 MERS survivors showed that 48% met criteria for chronic fatigue after 12 months, and 32% after 18 months.
Percentage of post-viral syndromes following viral infections:
EBV, Q Fever, Ross River Fever ~ 12%
West Nile Virus ~ 31%
Ebola ~ 90%
SARS ~ 50-82%
MERS ~ 32%
COVID19 ~ ???
The ME/CFS community is about to get much larger.
Post-viral fatigue is a real problem that we will soon face in a post-COVID-19 world. Despite the vast difference between West Nile Virus and Ebola, these post-viral syndromes share similar symptoms including fatigue, pain, sleep problems, cognitive fog, and mental health issues. A large degree of those who experience these post-viral syndromes also experience a tremendous degree of disability. Few can return to pre-infection level work and life functions.
Time will tell, and the research will eventually be done, to determine the percentage of post-COVID-19 individuals who will develop chronic fatigue and/or similar post-viral syndromes. It is fair to extrapolate from the data of the other known coronaviruses, MERS and SARS. Here, post-viral syndromes may develop in 50 to 80% of those infected with COVID-19. If we do the math, as of this writing 50-80% of the current 294,110 cases is a very large number!
The ME/CFS community is about to get much larger. I’ll pose the question again: is the medical community ready for an influx of new ME/CFS patients? The answer is no. The potential increase in post-viral ME/CFS diagnoses will require all of us who are already in this community to spread knowledge about the condition. That includes a focus on the best diagnostic criteria possible, abolishment of biopsychosocial models, an uptick in advocacy efforts, and the utmost best palliative care.
Hickie Ian, Davenport Tracey, Wakefield Denis, Vollmer-Conna Ute, Cameron Barbara, Vernon Suzanne D et al. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study BMJ 2006; 333 :575.
Garcia, MN. Et al (2014) Evaluation of Prolonged Fatigue Post–West Nile Virus Infection and Association of Fatigue with Elevated Antiviral and Proinflammatory Cytokines. Viral Immunol. 27(7): 327–333.
Wilson, HW. (2018) Post-Ebola Syndrome among Ebola Virus Disease Survivors in Montserrado County, Liberia 2016. BioMed Research International.
Moldofsky, H & John Patcai, J (2011) Chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep in chronic post-SARS syndrome; a case-controlled study. BMC Neurol. 11: 37.
Wing YK & Leung CM. (2012) Mental health impact of severe acute respiratory syndrome: a prospective study. Hong Kong Med J. 18 Suppl 3:24-7.
Lee, SH et al. (2019) Depression as a Mediator of Chronic Fatigue and Post-Traumatic Stress Symptoms in Middle East Respiratory Syndrome Survivors. Psychiatry Investig. 16(1): 59–64.
