The growing number of people not recovering from COVID-19, known as "long haulers", are drawing attention ME, which typically follows a viral infection.
Many thanks to Sharon Murgatroyd, member of the BC ME community, for her excellent letter published on July 30 in The Province in response to an article Long-haulers fuel concerns of being sources of infection.
It's a shame The Province editor chose to use "chronic fatigue syndrome" in the title instead of myalgic encephalomyelitis, but we are grateful for the light being shed on ME after decades of neglect.
Full letter:
Chronic Fatigue Syndrome and COVID-19
I read with great interest the story about the COVID-19 patients, called the “the long-haulers”, who continue to be sick with many debilitating symptoms after their COVID-19 diagnosis, and who continue to be so ill, with no idea when everything will improve or if their health will improve at all.
And I totally understand their distress.
These symptoms sound a lot like, and almost identical to, those of us who have the illness called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which happens to some after an infection, or severe flu, or some unknown source.
The recovery rate for ME is only about five per cent or less. And, right now, there is no effective treatment or cure, except pacing one’s entire life, to keep the symptoms as low as possible.
The most prominent symptom is called PEM, or Post Exertional Malaise, an escalation of all symptoms of the illness (profound fatigue to the point of collapse).
Of course, the illness can range from mild to completely housebound. But regardless, it devastates the lives of those who are ill.
I do hope that these COVID-19 cases will be investigated thoroughly. ME/CFS is a little-known illness, and lacks the support that is needed There is research going on, but it is very, very slow, due to a lack of financial support.
Research into these COVID-19 cases could be invaluable for us all.
Sharon Murgatroyd, Burnaby
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