The Long #Covid Revolution | The Nation
#MillionsMissing demonstrations like this one began in 2016 to raise awareness about myalgic encephalomyelitis, an infection-associated complex chronic illness (often abbreviated as ME/CFS). The hashtag alludes to the millions of dollars missing from research into ME/CFS and the millions of patients who are so marginalized from society that they sometimes seem to have disappeared. In the past three years, there has been an explosion of ME/CFS cases. According to #MEAction, the group that organizes #MillionsMissing, nearly half the current cases of long Covid meet the criteria for ME/CFS, and the majority of people with ME/CFS today are Covid-19 long-haulers.
Long Covid symptoms, which commonly include persistent headaches, cognitive-functioning issues, fatigue, neuropathies, dizziness and fainting, significant sleep disturbances, gastrointestinal issues, and post-exertional symptom exacerbation (the worsening of symptoms after physical, mental, or emotional exertion), can affect every system of the body and, like those of ME/CFS, can range from mild to very severe. It’s common for Covid-19 long-haulers to receive additional diagnoses for related chronic illnesses. Because scientists also believe Covid may reactivate dormant viruses such as Epstein-Barr, some people with long Covid have been diagnosed with Lyme disease, shingles, and herpes, among other viruses. Many Covid long-haulers share symptom clusters and illness experiences, but “long Covid” also serves as a political term: It is a way for Covid patients who never fully recovered to advocate for research, public education, and economic support, no matter where they fall on the severity spectrum.