Yesterday we quoted Nick Whigham, who made special mention of how annoying long COVID’s “teasing” nature is to its victims. A system-roaming condition turns up where and when it pleases. It doesn’t care if shortness of breath has been your main problem up until now. It arbitrarily decides, instead, to torment your sleep attempts with itchy hands. Long COVID is a tedious game of whack-a mole, with new pains and weaknesses relentlessly turning up and needing to be dealt with.
Much knowledge has been gained from patient groups forming within social media platforms, or by the request of medical staff members at various institutions. One is the Body Politic COVID-19 Support Group, whose newsletter is open to all.
Leora Horwitz, who directs NYU’s Center for Healthcare Innovation and Delivery Science, sees a role for the immune system in the overall picture. Journalist Yasmin Tayag paraphrased and quoted Horwitz:
The sheer range of symptoms reported by people with long Covid — more than 200 across 10 groups of organ systems, according to one patient-led survey — makes uncovering their biological origins a gargantuan task. There are likely several subtypes of long Covid, each with its own cluster of symptoms and cause. “We’re not talking about a monolithic, single entity.”
As previously mentioned, long COVID is similar but not identical to other conditions, including ME/CFS, otherwise known as myalgic encephalomyelitis/chronic fatigue syndrome. Black women are particularly susceptible to this ailment, and have long fought for recognition of their peculiar vulnerability to it. Writer Jamie Ducharme explains:
Researchers now believe at least 10% of COVID-19 patients develop long-term symptoms, including some that sound identical to those associated with ME/CFS: constant fatigue, cognitive dysfunction, chronic pain, gastrointestinal distress and more, many of which worsen after exertion. Some researchers now believe the conditions are one and the same, and some Long COVID patients who have been sick at least six months meet diagnostic criteria for ME/CFS.
People who had long been assailed by ME/CFS reached out to long COVID victims to share their hard-won knowledge of how to cope, especially in one important area. These patients are often misadvised by medical personnel, and urged to “push through” their exhaustion and force themselves to exercise. But persistence is not the answer here, or at least not the only answer. It is not the same type of recovery as strengthening a post-operative knee. When these patients give it the old college try, they too often wind up on an emergency room visit that could and should have been avoided.
Another recommended resource is Survivor Corps, which has published useful research. Families might also want to take a look at the Long Covid Kids Support Group, another community exemplifying the self-help and mutual-help movements that have spontaneously sprung up to meet the ever-increasing need.
Your responses and feedback are welcome!
Source: “’Dying not only worry’: Coronavirus ‘long-hauler’ details horrific symptoms,” Yahoo.com, 08/02/20
Source: “What causes long Covid? Scientists are zeroing in on the answer,” Vox.com, 01/31/22
Source: “Black Women Are Fighting to Be Recognized as Long COVID Patients,” TIME.com, 04/12/21
Image by Mike Towber/CC BY-SA 2.0