Addendum About COVID-19 Long-Haulers

At the end of last month one of my blog posts was about implications of COVID-19 long-haulers. At the time, mainstream media wasn’t yet saying much about them. They need what other long term chronically ill people with significant illness need. Up to now, both of my countries (UK & USA) haven’t done a great job with that. This virus is throwing so many more people into that situation, we’re going to have to pay attention.

There used to be a lively online Chronic Illness Forum in CompuServe. Doctors used to refer patients to CI Forum as a place where they could learn how to live with whatever they had. It was destroyed after AOL’s takeover of the company. Right now, long-haulers are making their own online communities to support each other and tie in with medical research. This article (pointed out by someone in Pantsuit Nation) tells about an especially good one.

But they are still missing a connection with people who have been living for years with other chronic illnesses. That means they are having to reinvent the wheel about how to live with many of their symptoms. The spark that made CI Forum so valuable was the overlap between what people with different illnesses went through. People with MS, chronic Lyme disease, ME/CFS, systemic lupus… turned out to have a lot of challenges in common, from symptoms to stigma to getting through the day. Forum members shared coping methods across illness boundaries.

We should be coming up with better ways to support the chronically ill across the board. Whatever we do to help COVID-19 long-haulers can also help people with other long term health problems, and vice versa. With the pandemic adding abruptly to the proportion of us who are in that boat, the clock is ticking.

A post on an entirely different topic, business oriented, is in the works. It has been delayed by a garden project that involved needing to hand-clean, move and place more than 5 tons of slurry-covered rocks. (My wife’s parents visited in mid-project, outdoors and with distancing. Her father looked at our project and blurted, “This is an engineering project!” That’s what happens when Space Lady and Astro Wife are beset by drainage problems due to the way climate change has altered rainfall patterns.) As I recover from that, I’ll get back in the swing of things here.