Tag: covid

Ah, gaps

The “Persistent Gaps” section of this new 🇨🇦 report on long covid is killing me.

Definitions and clinical guidance, sub-populations (how different groups are impacted), care and treatment, pathogenesis (underlying biological mechanisms and causes), socio-economic impact, and prevention. That’s… the whole thing. Long covid is one big gap. Laugh/cry.

I am happy to see they at least mentioned prevention this time. The previous reports that detailed how long covid was common, disabling, and permanent but somehow inevitable filled me with so much rage.

The new “recommended priority action” to “incentivize investment in improving indoor air quality in buildings where large numbers of people gather” is belated but good!

Last year’s teacher made sure our giant hepa filter got set up properly in this year’s new classroom without me even asking. This should not be necessary but under the circumstances it is such a relief to have an accomplice.

More inadvertent pandemic art

Photo of a small wood panel leaning against a plant pot. On the panel is a black and white stencilled image of a shadowy face in a white medical mask

I bought this in about 2005 from an artist who I think had been living in Hong Kong during SARS aka SARS-CoV-1. I wish I could remember his name.

This piece is so muted and only postcard-sized. It was insignificant in my home for 15 years, and now it pops out to every (tested or masked or quarantined) visitor.

Always a happy sight

Dark photo of a nightclub stage where three musicians are playing under red lighting. In the center, the drummer is wearing a black, ear-loop mask.

Shout out to the drummer from Sumac for performing in a mask the other night. And shout out to Vancouver Jazz Fest for having an early show with a bit of seating so this Long Covid / ME/CFS spoonie could attend some nightlife (in a respirator).

(Not perfect– stairs-only access! But I appreciated that they marked that info on the ad at least.)

Accidental pandemic art

This has been hanging on my wall since at least 2012… Staying tender under these particular apocalyptic conditions used to be just a cute proposal, but I think it actually was helpful to prepare an emotional stance ahead of time 🤷🏻

Photo of a framed illustration by Justin Madson that shows a person wearing a futuristic breathing mask and air tank. They are holding flowers and tiredly wading through a flood with mist and mountains in the background. Their sweater has a heart on the sleeve. I think it's from the comic Breathers.

An old practice from AIDS movements that I think we should try out for this pandemic: at the beginning of events, inviting audiences to call out the names of people who aren’t here because of the virus. Covid deaths, long covid, people sick today, immuno-inaccessible events, caregivers, etc. It’s so hidden, people think they don’t know anyone despite the huge numbers.

On what patients know

How patient-led research could speed up medical innovation, with examples from long covid and ME/CFS, including Solve M.E., PLRC, and MEAction

Of course they mention the speed of patient-led research, but I also love to see the recognition that patients help design better experiments and especially better controls. It’s hard to control for dynamic conditions and lack of diagnostic lab tests, but patients have expertise.

Millions Missing and counting…

Photo of a 72-cell plug tray with camas seedlings emerging like thin blades of grass

I’m posting these little camas babies for #MillionsMissingFlowers , a monthly chance to talk about ME/CFS.

This month I am thinking about how long it takes to get an ME diagnosis, 5+ years or more on average. ME is already listed as a common (5%+) outcome of covid infections, and we’re just finishing year four. I wonder how many people will realize this year that they got ME from covid in 2020. I wonder about Omicron in 2022.

Sources:

I really appreciated Bea in this episode of Death Panel, talking about the process of self-diagnosing before deciding to see a doctor.

She spent a year thinking she was just reading too much, before realizing she was going blind. Different conditions, but that’s so familiar to me– I spent a year thinking I was just sleep deprived or stressed before realizing I had cognitive and energy impairments.