@plaguepoems
About 5 years ago (see image below, saved this tweet before I deleted my account) I asked whether COVID would cause more ME/CFS cases and whether anyone was going to study this issue. And I was not the only person asking this!

We now have a study showing that this is indeed what happens

Among participants infected with SARS-CoV-2 the incidence of ME/CFS is 15 times higher than pre-pandemic rates.

https://batemanhornecenter.org/covid-19-triggers-me-cfs/

Here's a little executive function tip based on my Splines Theory.

If you're having trouble starting a complicated and boring task, give yourself time to "load the splines." Splines are just my silly word representing the fact that ADHD and autistic people are more detail-oriented. We have a hard time accessing an idea by its summary, and need to think about the whole system with all its parts (splines) in order to grapple it. This takes time and energy.

But the good news is, reticulating splines is mostly a passive activity. First step, the hardest, is communicating to your brain about what it needs to load.

A few hours ago when I started gathering paperwork for taxes, I felt incredibly overwhelmed and my chronic pain was activated. So I pushed myself to kinda get started (updating my list from last year, opening the email folder, creating some folders on my computer), but then I hit a wall. Under intense overwhelm, I couldn't get started turning those emails into PDFs.

But my brain knows what it needs to do. It just needed time. I entered my passive splines reticulating phase, which can take anywhere from a few hours to a few days. Since I only have a week to get this to my CPA, the sooner I started the loading process, the better. Most of that happens in the background. The hardest part was telling my brain to start, which I did by giving a glance to the body of details I will need to absorb.

Then I went did a couple of hours of paid writing work which my brain normally expects on a Monday (so that went easier). And then back to taxes to see if things were flowing better.

And they are! I still hate it! But now my mind has an understanding of the task and it doesn't seem impossible.

I will work on it until I feel sick and foggy again, then I will pick up tomorrow where I expect it to go even more smoothly.

Here's my 2013 post on Splines Theory of neurodiverse executive function.

#taxes #ADHD #ActuallyAutistic #pacing #MECFS

https://www.corbden.com/2013/10/splines-theory-spoons-metaphor-for.html

@Garwboy I've made the exact same argument for #mecfs and transgender people - we've just started noticing, but they were already there!

More quotes:

"Check out other organizations that fight for Long COVID day in and day out including:

Black Long COVID Experience, COVID-19 Longhaulers Advocacy Project, Long COVID Families and Patient-led Research Collaborative, among others!

Share information, check out these groups, donate today!

Long COVID research care and treatments matter for everyone."

@longcovid

3/3

#MEAction has been fighting to protect the Long COVID Advisory Committee at HHS, which was recently dismantled.

In this video, five patient-advocates read an open letter to Health and Human Services Secretary Robert F. Kennedy Jr.

https://www.youtube.com/watch?v=hQn3kqyAT6w

@longcovid

2/3

the author of the article i shared above needs help!

Critical Healthcare Support for Victoria

https://www.gofundme.com/f/help-vs-medical-expenses

Venmo: itssvee

@futzle Mother Woila is a mountain in a remote & extremely wild part of Deua National Park in NSW. The navigation to get there is very challenging, through precipitous hill-spur country. I twice attempted the infamous Woila Circuit and failed both times, but fully intended to keep going back until I'd succeeded. Alas, #mecfs had other ideas, but I try to hold onto that wild version of myself.

Anyway, I desperately needed to replace my teenage username of StickyVelvet (I know ....), and WildWoila was a whole lot more palatable.

Which begs the question: what terrible internet handles do people have hidden in the closet?

2/
"Are you someone who is experiencing, treating or caring for someone with ME/CFS and/or long-COVID?

The Australian e-Health Research Centre at CSIRO, in partnership with Emerge Australia..., is conducting a survey to understand the research priorities of the community"

#CFS #mecfs @mecfs @longcovid @auscovid19