By Valerie Eliot Smith
On 18 March 2020, I tweeted this:
“#coronavirus is ongoing international emergency. #MyalgicEncephalomyelitis has been international crisis/scandal for decades. In US #ME continues to be marginalised by @CDCgov & @NIH. Nevertheless #ME advocacy must continue as #ME patients everywhere remain vulnerable + invisible.”
Since that tweet, the COVID-19 crisis has continued to escalate worldwide. Given that the disease myalgic encephalomyelitis (ME) often has an infectious onset, inevitably there is already a considerable amount of discussion about whether or not the current pandemic is likely to trigger a rise in the number of cases of “ME” in due course. Unfortunately, this discussion is not always as well-informed as one might hope.
At this critical time, the world is rightly focused on dealing with the immediate impact of the COVID-19 pandemic. Nevertheless, the need to continue advocacy work on behalf of the international ME community remains essential. ME is seriously misunderstood as an illness and the patient community remains devastated by decades of stigma and neglect.
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