Early on, I squeezed my way into the long COVID clinic at UHN, led by Dr. Angela Cheung. Just having some validation and a diagnosis was helpful. I learned that I had a combination of long COVID phenotypes, or groupings. The first is the brutal cocktail of severe fatigue, brain fog and post-exertional malaise – which is the worsening of symptoms after physical, mental or emotional effort. This is known as myalgic encephalomyelitis, or the misnomer chronic fatigue syndrome, termed “ME/CFS” for short. It’s a disruption in the energy metabolism at a cellular level that’s akin to a smartphone running out of battery much faster than the latest model. Staying within my “energy envelope” became the centre of my being. The second phenotype is related to autonomic dysfunction, with increased heart rate, lightheadedness, dizziness when standing, shortness of breath, headaches, nausea and other gastrointestinal symptoms. The Canadian postural orthostatic tachycardia syndrome (POTS) guidelines are helpful, and trialing medications can be a game changer. I wish I had started ivabradine sooner. The third phenotype is dominated by allergic-type symptoms, including rashes, headaches, worsening asthma, joint pain, or abdominal pain, nausea or diarrhea made worse with specific types of foods. This grouping is thought to be related to mast cell activation. https://hospitalnews.com/an-er-doctors-experience-with-long-covid-my-symptoms-seemed-endless/
It's a sympathetic article, but there is the grasping onto unevidenced 'knowledge' and treatments that is typical of people in the early stages of coping with a poorly understood disease. With her role as a doctor though, the ideas she writes of come across as that much more credible. The result is that, although the disease sounds horrible, people come away thinking that there is a whole range of useful help and that they too will certainly recover. The idea of Long Covid phenotypes that actually mean anything is not evidence-based. We don't know for sure that it is a disruption in the energy metabolism at the cellular level, although it does feel like that. There's no evidence that SSRIs help. To be fair, she does call for more trials. But, I don't get any sense that she has considered that she might have recovered anyway, as most people do, without all the various treatments she was able to get.
That just goes to show how human mind works. It can't deal with uncertainties and unknowns, so it has to see patterns in everything, even where they don't exist. That's how superstition and religion evolved, I suppose. But then, they say science evolved from that as well, so maybe hope is not a bad thing. (I know I'm pursuing what I'm pursuing because I have hope). As long as people are willing to drop their hypotheses in the presence of the evidence to the contrary.
