Here is a list of resources that have inspired me to continue when I’ve been overwhelmed:
- Gez Medinger’s YouTube channel, which focuses on the science of Long COVID.
- My Recovery From Long COVID by Ben Coomber.
- Phil Murray’s YouTube interview–Phil has been an advocate for people with post-viral illness since recovering from ME in his thirties.
- Decode Your Fatigue by Alex Howard.
- Recovery from Chronic Fatigue Syndrome by Bruce Campbell.
Recovering from any serious fatiguing health condition requires incredible mental strength and significant physical resources (shelter, food, money). To make matters worse patients are often not believed by doctors, and sometimes even their own family and friends, due to the psychologization of fatigue-related illnesses (ME, Fibromyalgia, Long COVID, etc). This means they must be tough enough to persevere in the face of being misunderstood and doubted by the very people they most need to care. If you know someone with a fatiguing illness please reach out to them and let them know that you believe their condition is biological in origin and that they can heal their body in time–believe me, they need your support.
Far from being merely “fatigue,” ME, Post-Viral Fatigue Syndrome (PVFS) and Fibromyalgia involve dealing with the soul-destroying consequences of post-exertional malaise, dysautonomia and/or chronic or relapsing/remitting pain. Fatigue, in the context of these health conditions, is very rarely just “feeling tired”–it is the complete cessation of life-as-it-was-known for an indefinite length of time, with very little chance of complete recovery (5% according to meta-analysis–in my view this tragically low number is due to the failure of mainstream Western medicine).
Ironically, the sheer adversity faced by those marginalized by these illnesses makes their chances of healing even lower.
Due to the lack of support, the terrifying prognosis, the debilitating and painful symptoms, the mortal need for safety and healing, and the fact that there is no end in sight, people with fatigue-related conditions have to advocate, care and act for themselves in a time of incredible adversity. This requires some hope, some guidance, and some inspiration.