Long Covid

 While this blog has been dormant as I write my book, The Unquantifiables, Long Covid has crept into the ME/CFS space and I find that my X feed is filled with people once again researching long lists of symptoms, going to doctors appointments with pages and pages of issues and symptoms, asking for medical research funding, and generally asking for validation for their illness while they experience the worst and most debilitating symptoms they've ever had with no hope for a medical cure.

I read these posts with the same sense of frustration that I felt with the CFS/ME community. I wonder why they keep going to doctors if they have no answers, and why they keep accusing doctors of gaslighting them when they can't find any medical reasons for them to have such debilitating symptoms. They simply don't have the answers. The NIH obviously has no real grasp on this as much as anyone else in the medical community, and it's perfectly understandable why.

CFS/ME Long Covid present as very complicated clustering of symptoms. Brain fog, debilitating fatigue, vertigo, POTS, PEM, muscle weakness, and a weakened immune system making those who suffer more susecptible to infections. It can affect digestion, make one very sensitive to sunlight, and not able to cope with any sensory stimulation. The body literally shuts down and goes into a hypometabolic state. 

The theory amongst those of us who have recovered, is that this can't be classified as a physical disease, nor can it be classified as a mental disease. Doctors are trained, by the way, in the dualistic body or mind approach. You are either have a physical or a mental illness. CFS/ME and Long Covid are neither physical or mental diseases. It occurs on the level of communication and control between mind and body, which is the Nervous System, more specifically, the Autonomic Nervous System.  There is your "root cause, interestingly enough, if you look at a diagram of the nervous system it actually looks like the roots of a tree.  In short, it's a dysfunction of the sympathetic nervous system, in which the nervous system is literally stuck in overdrive. The body is in a constant state of the fight/flight sympathetic activation. It literally can't switch into the rest/relax parasympathetic mode. That's why sufferers feel like they've run a marathon after walking across the room or taking a shower. That's why they have no ability to recover after any sort of exercise. 

This nervous system activation happens after the body takes what I call a "hard hit" from a physical or emotional stressor. Covid is a huge stressor on anyones body. It takes people weeks to recover because it is such a hard hitting virus. Some people never recover. It's not anything unique about the Covid virus, it's the hit the body takes when a person has it, just like with CFS/ME. And the more stressful someone's life was before  they got Covid ( and stress can come from the fear of getting Covid ), the more likely they are to experience Long Covid.  My own bout with CFS started with a virus that hit me the night before I was due to compete in a triathlon. Sick as I was, I still competed, and simply never recovered. It took me three and one half miserable years to finally come out of it, and I only did recover because I found others who had done so.

I've heard the story of an Olympic athlete who could not compete in the Olympics because of Long Covid, and I feel this same sense of frustration. Did he not research Olympic athletes who've recovered from CFS? Does he not know that people like myself, not an olympic athlete by any means but a profoundly active person who cycles long distances every week and plays competitive tennis have managed to recover? He should. In fact, I found that Olympic athlete who recovered and did what she did. That's all it took for me to find help and healing for this condition. 

My advice to anyone with Long Covid, would be to stop researching symptoms, stop trying to be a medical researcher, and if you have a firm Long Covid diagnosis, stop going to doctors. Find people who have recovered and talk to them. Recovery is a process, but it doesn't take years, it takes months.