This tweet just alerted me to a dynamic I hadn’t quite seen, namely that the public is generally ignorant about long covid, what it is, and why it matters so much.
I get a lot of my initial information about covid from twitter, where there is much discussion about long covid that seems to not be being picked up by mainstream media (and I’ll hazard a guess by alt media too, it’s not like subcultures are immune to ableism).
On twitter there are people with long covid (PWLC), and nurses, doctors, statisticians, public health bods, some of whom also have long covid, all talking about the issues. Here’s a non-comprehensive list off the top of my head of what matters,
- long covid is a new, emerging syndrome, poorly understood by the medical profession
- it affects a wide range of organs and systems in the body
- research is being done, and this takes time, both to complete studies and to develop the bodies of knowledge that subsequent studies are built upon
- mainstream medicine and public health are just not very good at responding to chronic health conditions they don’t understand. WINZ aren’t great either.
- mainstream medicine tends to focus on reductionist views of the body and illness, post-viral syndromes affect multiple systems at once.
- the alternative health sectors are doing good things for people with such chronic illnesses that mainstream medicine can’t. There’s also a fair amount of bullshit out there. Maintream medicine and research largely ignores the stuff that is working.
- there’s a fair amount of discussion about the similiarities between Myalgic Encephalomyelitis (M.E.)/Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) (another post-viral syndrome), and long covid, by both people who are unwell and medical people/researchers.
- many people with chronic health issues watched the original emergence of long covid and we just nodded our heads and went yep. As the tweet says, there is a huge body of experience there and a lot of skills. This includes how to adapt, what systems need to be in place, and what makes the difference between quality of life or not.
- many people think of disability as something over there, a deviation from normal. We are generally not very good at seeing disability as a normal part of life and making sure it is attended to.
- One of the big concerns about long covid is the high rates will make many more of us disabled in some way (10% – 40% of people with covid end up with long term symptoms)
- while some patterns are emerging, we don’t know yet who gets covid and why. Otherwise healthy people who get mild covid can end up with long covid. Asymptomatic cases likewise. The unknown aspect of this suggests great caution.
- there is no way to know at this point how long covid will play out over time, including with new covid variants. Only time will tell.
- the politics of disability, health and wellbeing are going to get a workout. In New Zealand we have treated chronically ill people badly for a very long time, both via WINZ and the MoH, and in parliamentary politics (remember David Shearer’s painter on the roof story?)
It’s understandable that public health, governments and the media have focused initially on acute covid, but we’re two years in now, it’s time to put long covid to the forefront as well.
I’m going to put this post up now and then edit to add content over the day.