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Joined 1 year ago
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Cake day: July 6th, 2023

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  • Hm… I’d actually disagree with that conclusion? I think what the author is saying there is that ableism isn’t simply a matter of the words being used. A statement that treats disabled people as subhuman isn’t okay because it avoids using these words - it’s still ableist.

    From the beginning of the article (emphasis mine):

    Note that only some of the words on this page are actually slurs. Many of the words and phrases on this page are not generally considered slurs, and in fact, may not actually be hurtful, upsetting, retraumatizing, or offensive to many disabled people. They are simply considered ableist (the way that referring to a woman as emotionally fragile is sexist, but not a slur).

    Not everyone has the ability to be mindful of how certain language originated in ableism and this reinforces it. But for those of us who can, it’s a good idea to try.







  • It also said it would pay realistic premiums for certain product attributes, such as toothpaste with fluoride and deodorant without aluminum.

    Most toothpastes in the US have fluoride - it’s the ones that don’t which likely cost more (ones with “natural” ingredients, ones with hydroxyapatite…).

    The startup Synthetic Users has set up a service using OpenAI models in which clients—including Google, IBM, and Apple—can describe a type of person they want to survey, and ask them questions about their needs, desires, and feelings about a product, such as a new website or a wearable. The company’s system generates synthetic interviews that co-founder Kwame Ferreira says are “infinitely richer” and more useful than the “bland” feedback companies get when they survey real people.

    It amuses me greatly to think that companies trying to sell shit to people will be fooled by “infinitely richer” feedback. Real people give “bland” feedback because they just don’t care that much about a product, but I guess people would rather live in a fantasy where their widget is the next best thing.

    Overall, though, this horrifies me. Psychological research already has plenty of issues with replication and changing methodologies and/or metrics mid-study, and now they’re trying out “AI” participants? Even if it’s just used to create and test surveys that eventually go out to humans, it seems ripe for bias.

    I’ll take a example close to home - take studies on CFS/ME. A lot of people on the internet (including doctors), think CFS/ME is hypochondria, or malingering, or due to “false illness beliefs” - so how is an “AI” trained on the internet tasked with thinking like a CFS/ME patient going to answer questions?

    As patients we know what to look for when it comes to insincere/leading questions. “Do you feel anxious before exercise?” - the answer may be yes, because we know we’ll crash, but a question like this usually means researchers think resistance to activity is an irrational anxiety response that should be overcome. An “AI” would simply answer yes with no qualms or concerns, because it literally can’t think or feel (or withdraw from a study entirely).



  • When I moved in with my partner, I had to let go of a lot food-related shame or sense of obligation. My partner has executive dysfunction stuff, I don’t have the energy for cooking - but my parents scoffed at frozen meals and takeout when I was a kid, and my dad got annoyed when something in the fridge went bad

    My life got so much easier when I stopped feeling bad about finding easier ways to eat. I’m glad you’ve found options that work well for you!



  • I’ve been doing savory oatmeal for breakfast! It’s salty for an early boost for POTS, and with quick oats I can just dump things in a bowl and microwave for a couple minutes (low spoons for CFS). Still working on collecting things I can add, like jarred sliced mushrooms and asking my partner to boil lots of eggs to keep on hand in the fridge.

    I don’t have the energy to cook or make most meals, so I’m usually just helping my partner with ideas. It’s exciting to be able to come up with ideas and actually get to execute them.



  • I’ve tried physical therapy several times - and unsurprisingly to anyone who understands PEM, as I gained muscle strength, my endurance got worse and I slowly crashed.

    My dream one day is to be able to create my own physical therapy plan. I have some ideas that revolve around some guidelines I’ve found about aerobic respiration dysfunction, mainly:

    • lying down
    • do an exercise for no longer than 2 minutes at a time (less is better)
    • follow a 1:3 rule for resting between sets (rest for at least 3 times the length of the set)
    • keep heart rate very low, and no aerobics
    • increase weights, not number of repetitions (to keep time spent exercising at a minimum)

    But unfortunately my health isn’t there yet. A lot of this is based on this overview of CFS/ME for physical therapists, and this part struck me:

    Exercises should be initiated only after the patient can complete all ADLs/IADLs without setbacks due to PEM that result in eliminating ADLs/IADLs or other meaningful routine activities from their agenda.

    I don’t really consider myself to have trouble with ADLs (Activities of Daily Living), since they’re so limited. I can basically shower, dress, and eat on my own, with appropriate aids. (I mean sometimes I skip showering and sometimes I need help putting on compression socks but it’s not bad.)

    But I hadn’t heard of IADLs before.

    Instrumental activities of daily living (IADL) are those activities that allow an individual to live independently in a community. Although not necessary for functional living, the ability to perform IADLs can significantly improve the quality of life. The major domains of IADLs include cooking, cleaning, transportation, laundry, and managing finances.

    The only one of those I can do regularly is finances, so… Yeah. Not ready for DIY PT…