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Chronic fatigue experienced by individuals with long COVID.

Support For Long COVID & Chronic Fatigue

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Long COVID and Chronic Fatigue

Getting COVID-19 can be very physically draining, so it’s no surprise that getting Long COVID can (and usually does) result in chronic fatigue.

But, what does this mean and what can we do about it?

What makes Long COVID “long”

Long COVID is generally defined as COVID-19 whose symptoms last longer than 28 days, but in reality the symptoms not only tend to last for much longer than that, but also, they can be quite distinct.

Here’s a large (3,762 participants) study of Long COVID, which looked at 203 symptoms:

Characterizing long COVID in an international cohort: 7 months of symptoms and their impact

Three symptoms stood at out as most prevalent:

  1. Chronic fatigue (CFS)
  2. Cognitive dysfunction
  3. Post-exertional malaise (PEM)

The latter means “the symptoms get worse following physical or mental exertion”.

CFS, Chronic Fatigue Syndrome, is also called Myalgic Encephalomyelitis (ME).

What can be done about it?

The main “thing that people do about it” is to reduce their workload to what they can do, but this is not viable for everyone. Note that work doesn’t just mean “one’s profession”, but anything that requires physical or mental energy, including:

  • Childcare
  • Housework
  • Errand-running
  • Personal hygiene/maintenance

For many, this means having to get someone else to do the things—either with support of family and friends, or by hiring help. For many who don’t have those safety nets available, this means things simply not getting done.

That seems bleak; isn’t there anything more we can do?

Doctors’ recommendations are chiefly “wait it out and hope for the best”, which is not encouraging. Some people do recover from Long COVID; for others, it so far appears it might be lifelong. We just don’t know yet.

Doctors also recommend to journal, not for the usual mental health benefits, but because that is data collection. Patients who journal about their symptoms and then discuss those symptoms with their doctors, are contributing to the “big picture” of what Long COVID and its associated ME/CFS look like.

You may notice that that’s not so much saying what doctors can do for you, so much as what you can do for doctors (and in the big picture, eventually help them help people, which might include you).

So, is there any support for individuals with Long COVID ME/CFS?

Medically, no. Not that we could find.

However! Socially, there are grassroots support networks, that may be able to offer direct assistance, or at least point individuals to useful local resources.

Grassroots initiatives include Long COVID SOS and the Patient-Led Research Collaborative.

The patient-led organization Body Politic also used to have such a group, until it shut down due to lack of funding, but they do still have a good resource list:

Click here to check out the Body Politic resource list (it has eight more specific resources)

Stay strong!

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