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29 Jun, 8 tweets, 2 min read
ME is one of the most debilitating conditions you've probably never heard of. Learn this today:

Most people with ME consider the CFS part to be dismissive and outdated. "Chronic Fatigue Syndrome" is such a misleading term that the doctor who coined it later apologized. #pwme
ME has always been with us -- some people, after they get a virus or have certain other kinds of trauma, experience ongoing symptoms that disable them for the rest of their lives.

During pandemics, we see waves of ME sweep across populations. Lots of #LongCovid patients have it.
But here's the catch: despite 9000 different biomedical findings in ME patients and despite ME being classified as a neuroimmune condition, there are still tons of doctors who treat it is as psychosomatic. Why?
You know who LOVES those doctors, and who pays them to keep saying that long after it's been conclusively shown that this is a real thing?

Insurance companies.

Because they love paying for a bit of CBT therapy over years of biomedical treatments.
We have to speak up about this, we can't let them continue to do this. The population of people living with ME is expected to at least double and possibly triple thanks to Covid. Those people can't just be dismissed, ME is real and life-destroying.
(For those of my followers who are autistic: ME can manifest with sudden onset sensitivity to sound, light and touch, and it can progress from slight discomfort to unbearable pain. Some of you know what that's like, others can imagine more easily than most. It's horrific.)
A final note - many of you have people in your lives who got Covid and haven't fully bounced back.

That's real, that's not in their heads. They need your patience, love and support as they navigate an extremely difficult situation.
Oh, right - ME is myalgic encephalomyelitis.

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More from @mykola

your friend myk Profile picture
29 Jun
The one we never shipped, where we built a distributed graph database with a built-in compute fabric using event sourcing and immutable delta CRDTs.

The value is in what it taught me, from writing a binary format to wrangling Hadoop to how products can fail.
What if you wrote a database that didn't store state? What if you only tracked changes, via append-only logs of (hypernode) events carrying relational data between different nodes in your hypergraph?
What if state could be derived at any time from those changes? So you could pre-populate a downstream SQL database by parsing the changes and turning them into SQL writes. You could group events by target for quicker queries.
Read 24 tweets
your friend myk Profile picture
26 Jun
This is a good question, what’s the difference between masking and simply using social skills that are maybe harder to learn?

Masking to me involves fear - a fear of being perceived as a fraud, a poser behind social skills, maybe? There’s an edge.
I’m having Interesting Thoughts based on some excellent replies.

What if what we call masking is a response to dealing with shame, and autistic people mask so much because we are taught to literally be ashamed of who we are?

Everyone masks a little, maybe. But we hide so much.
My advice to people who want to stop masking has long been “your shame is a map to those parts of yourself you were taught to hate, and so need more love.”

What if it IS that simple? Autistic trauma leads to toxic shame leads to masking.
Read 11 tweets
your friend myk Profile picture
17 Jun
There's this old show Northern Exposure about this arrogant young doctor who just graduated med school and has to go work in Alaska to pay off his debt, and it's an ensemble cast about a quirky small town, and it's a lot of fun.
As I take my meds this morning I'm particularly reminded of an episode featuring "Chris In The Morning", the local radio DJ who plays esoteric tracks and rambles philosophical musings onto the airwaves every day. Totally lovable dude, turns 40 and gets super sad.
"It's just, I love life so much and I'm sad that I have to die soon. All the men in my family die in their early 40s."

And the doctor is like, dude, you just have high blood pressure. You can take pills for that and live a full life.
Read 4 tweets
your friend myk Profile picture
16 Jun
My god is it Bloomsday already?

James Joyce #wasNotNeurotypical. I read him and his stand-in character Stephan Daedalus both as autistic+adhd.

His daughter was almost certainly autistic before we had words for it.

I need to write this paper.
"A Portrait of the Artist as a Young Man" is a story of a kid who grows up as an outsider to his own culture. He is constantly seeking to understand what makes him unique, what makes him not fit - religion? values? He sets off to find himself.

Short answer: he's ND, without dx.
When he comes back to Ireland a few years later as a young man in Ulysses he's just as alienated, he's living in his own head.

The book gives him three chapters of attention and then sort of restarts with a different protagonist.
Read 8 tweets
your friend myk Profile picture
11 May
A hundred years ago the modernist era in literature was thriving.

The entire social order of western civilization had just been burned away in a senseless war. Identity had to be created from scratch. You couldn’t just go on being the person you’d been, the world had ended!
Writers like Virginia Woolf and James Joyce and Ford Madox Ford took as their themes this deep into identity, but crucially into identity as defined in opposition or contrast to society at large.

Put bluntly: these people wrote about ND experiences suddenly being valid.
Here in 2021 we are in a similar cultural moment. The old world, where media decides truth, is over. We’re in a post-truth postmodern future, and we are once again in a place where identity itself is broken.
Read 8 tweets
your friend myk Profile picture
10 May
You know, reflecting on how I used to feel before I knew I was autistic and had reasonable but different limits, I think about how often I felt like "I don't want to do X" but did it anyway.

And I think about how "I don't want to" is a box that could hold one of many things.
Now it's never "I don't want to X", it's often "I don't have the energy for X" or "I'd prefer not to have to do X if Y is going to be there" or "Doing X is really loud and therefore painful".

And how before I started getting to know myself I just thought I didn't want to do X.
I used to think "I don't feel good" or "I feel good". Now I think "I'm proud of the work I did today but bothered by my friend's comment and a little bit anxious about that family thing next weekend" etc.

These things can be learned - it's just sometimes we don't learn them.
Read 8 tweets

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