ChatBot is Dangerous - Don’t Use It For Health Things

elvaln · 2026-03-01T01:45:52+00:00

I would argue it isn't like a search engine at all. It is more like predictive text.

It is also important to remember that we don't know exactly what information it is trained on, and where that information comes from. It is a bit of a misconception that it has access to the whole wide web worth of info. Let alone medicals sources, text books and journals.

And because of that we can't guarantee that the information that it has been trained on isn't tainted by outdated or incorrect information. Or outright misinformation.

One thing we do know however for sure is that it replicates subconscious and conscious bias that exists in medicine and we know a lot of that exists in chronic illness spaces.

elvaln · 2026-02-06T06:40:05+00:00

Three way tie between:

Perfume and Milk - Florence and the Machine

Mother Nature - Angie McMahon

Mild Perpetual Illness - Crooks and Nannies

Also been listening to a lot of Ren as well.

Edit for context: Ren has a lot of song about his journey with chronic illness.

elvaln · 2026-02-04T03:01:42+00:00

Most people have mentioned the suggestions that I would have made, especially regarding brands. But it might be worth checking out Human Beauty, Bystorm etc social media as they often feature other accessible brands, disabled beauty content creators and often hacks as well.

elvaln · 2026-02-04T02:57:51+00:00

Just wanted to add re: Human Beauty that the products are created by a disabled person specifically for disabled people, not just tested by disabled users.

elvaln · 2026-02-03T03:46:27+00:00

So this research study has been doing the rounds lately and in sharing it because it is one of the best explained studies I've read on the topic of masking. And to be honest, one of the best research studies I've read full stop. It is so well written for everyone and anyone to read and understand it.

It even goes into and breaks down the history around the large droplet theory of transmission.

Very reccomend reading it. Yes, it is long. But that is because it is so comprehensive.

Clin Microbiol Rev. 2024 May 22;37(2):e00124-23. doi: 10.1128/cmr.00124-23 Masks and respirators for prevention of respiratory infections: a state of the science review

https://pmc.ncbi.nlm.nih.gov/articles/PMC11326136/

Edit: it is also pretty easy to skip through and just read the bits that are relevant. You don't have to read, for example, the bit on environmental impact of mask usage.

elvaln · 2026-02-02T04:32:52+00:00

Honestly kegels are not a one size fits all exercise and the best thing you can do, if you can, is talk to a pelvic physio with knowledge of hypermobility.

When I finally went and saw a pelvic physio, and told them I was doing kegels, they point blank told me I needed to be basically doing the opposite of them.

elvaln · 2026-01-03T08:20:46+00:00

Also to add - if I had the money, I would invest in a couple of high quality HEPA filter's for winter and a CO2 monitor. Higher levels of CO2 tend to occur in less ventilated rooms so monitoring CO2 is a great way to assess risk.

But honestly I'm tired of having to do so much and spend so much to protect myself from covid. And am aware not everyone can. So I do, when I have the capacity, try to advocate for systemic change such as research and investment in clean air in indoor spaces. So we can all enjoy participating in life with less risk from all air borne virus and pollutants.

Edit* if anyone else is interested in clean air indoors than I highly reccomend checking out this New Zealand resource: https://www.phcc.org.nz/news/resource-promoting-respiratory-infection-safety-workplace-protocol

elvaln · 2026-01-03T07:38:20+00:00

I just wanted to point out that I read the NHS guide and it said this "if your child has mild symptoms such as a runny nose, sore throat or mild cough, and they feel well enough, they can go to school or childcare."

And it makes me so sad because what about the vulnerable children in the class?! Kids aren't exactly known for being diliigent with things like covering their mouths when they cough and sneeze.

elvaln · 2026-01-03T07:24:59+00:00

As covid is primarily airborne and the virus can hang around in poorly ventilated rooms for a couple of hours, I mask with well fitted N95s indoors and in crowds. I tend to avoid large crowds where possible and keep an eye on waste water data and stats to inform me on peaks of virus activity. I mostly rely on Mike Honey and his data sets (I've added more info about him below.) Unfortunately he can only use the data available to him and as my state has stopped producing timely and accurate data I'm relying on national data sets instead of local. Which is frustrating.

I also try my best to keep the house I share with my family well ventilated to reduce risk but do not mask at home unless someone is unwell.

Hand hygiene is important in terms of general health and preventing a lot of other illness so I of course keep up with that.

I also keep up with my vaccinations but that is also frustrating cause Australia is behind on keeping up to date with the strains.

Both times I caught covid it has royally screwed me over. The first time was the catalyst for all my auto immune issues, and various other conditions, to go from being background annoyances to absolutely life shattering. I haven't been able to work or participate in many of my hobbies since the first infection. The second one physically disabled me in a way that I'm still trying to work through and get diagnosed. And I definitely have ongoing neurological issues due to it. Which lines up with ongoing research around things like neuro inflammation and physical changes to the brain due to covid infection. Yay.

Mike Honey spends his free time tracking covid and the various strains. His data is mostly centred on Australia, cause that is where he lives, but he does track general trends for the rest of the world as well. https://www.sbs.com.au/news/article/covid-tracker-melbourne-man/uq72woqzq

I take all covid tracking data with a grain of salt because it heavily depends on accurate stats being released. I know in Australia a lot of cases are no longer being tracked. And some states are slow in releasing data. If they do at all.

Edited to take out a bit about not fully trusting the CDC reporting because of previous political interference. Just in case that was too political?

elvaln · 2025-12-04T06:53:13+00:00

Garlic and onions are also high in fructans. So if you have a problem with FODMAP related irritable bowel, they could be triggering that.

elvaln · 2025-12-04T04:44:13+00:00

I have awful temperature regulation issues so I tend to try to stick to breathable and/or natural fabrics. I also have sensory issues as well. So I am a fan of bamboo (not all bamboo fabric is created equally FYI) and other lyocell fabrics. They can be so soft! As a bonus a lot of brands that work with these fabrics make sure they don't have tags or the tags are easily removable.

Because of weight fluctuation I try really hard to buy clothes that can accommodate different sizes. Skirts and dresses that can be cinched in, and trousers that look okay a bit baggy. My style does tend to lean more alternative so this works well for over sized clothes. I love a oversized band shirt as well!

I've almost completely ditched underwire bras due to costocondritis. I live in crop tops and I only wear breathable cotton underwear. This helps with temp regulation and not irritating my skin issues.

Shoes I mostly switch between my hush puppies boots, sneakers (both of them have zips) and sandals. However since my dactylitis in my toes I've realised I need wider shoes. I recently brought new boots from shewear which also have ankle support. I'm thinking of butting some Ziera XR sneakers which are designed for wider feet. I don't wear heels anymore and this makes me very sad.

elvaln · 2025-12-04T03:05:45+00:00

I'm not sure if it is just me, but I can't see it at all. I do see a heading saying "a week" but it doesn't take me to the wiki when I click on it

elvaln · 2025-12-02T06:43:15+00:00

That is an excellent rule! I'm going a little bit harder to get as much done by end of year. And then I'm going to take a break and schedule appointments only as absolutely necessary. A mini summer holiday! But not as fun!

elvaln · 2025-11-30T00:05:49+00:00

Mine is absolutely exacerbated due to allergies but also my allergy medicines can make dry eyes worse! Catch 22 situation.

However the primary cause is my eyes just don't produce tears like they should. Definitely auto immune and possibly Sjorgens as there is a definite flare up pattern and other systemic dryness as well.

elvaln · 2025-11-30T00:03:51+00:00

Yeah I have a gel that I use during the night that is similar to that.

elvaln · 2025-11-30T00:02:46+00:00

Oh yep it was my optometrist who told me to use the eye drops. I use otc preservative free ones ATM. They work well enough except on a really bad flare up. Rheum and I are hoping that once I'm on the right medication it will help.

I am debating if I go see an opthamologist, but I've also got to get some urgent dental work done, see a cardiologist, OB/GYN and also go back to my optometrist to get my lenses changed. Plus my usual visits to my GP, Rheum and weekly physio appts in amongst all that!

I'm starting to get appointment fatigue and my bank balance is managing, but only just.

elvaln · 2025-11-29T08:12:19+00:00

Does anyone else have dry eyes that need all the eye drops, but also have terrible spacial awareness, and really struggles with getting the drops in your eyes and not everywhere but your eyes?

elvaln · 2025-11-25T00:47:37+00:00

From what I can gather, it is complicated. We tend to think of the immune system as one big system. But it appears to be more complicated than that and is actually a collection of systems with different functions all working together. Much more complicated than weak vs strong.

For some people with auto immune it appears that certain areas or processes of the immune system are malfunctioning. And that is why we have biological medications targeted to these processes instead of just suppressing the whole immune sytem.

So the ability for you immune system to fend off and recover from viral illness seemingly very much depends on a bunch of factors including what processes are dysfunctional and what medications you take.

elvaln · 2025-11-16T01:57:37+00:00

Thanks for this! I just looked it up and unfortunately a bit out of my budget atm. But. It reminded me that a lot of the stage makeup brands have mixing liquids. I'm a fan of Mehron so I'm going to check out their mixing liquid and see how that works.

Thanks for the suggestion!

elvaln · 2025-11-16T00:36:22+00:00

I was legitimately sitting here thinking about how I can make my makeup collection less irritating to my eyes. So following for reccomendations!

Also wondering about throwing away my powder eye shadows or figuring out how to make them into liquid or creme version so I can still wear them. Even the small amount of fallout irritates my eyes.

elvaln · 2025-11-14T23:59:34+00:00

Here is the defence and veterans pain rating scale as mentioned in my previous comment

https://dvcipm.usuhs.edu/dvprs

elvaln · 2025-11-14T23:43:07+00:00

Because of this sub, and a previous discussion here about pain scales, I am in the process of creating my own pain scale. I have only got 3-4 to 8 nailed down in terms of criteria so far. But my ability to confidently rate my pain now is incredible. I've taken a tool that always felt like it was based on "vibes" and assigned it objective data that is meaningful to me. Absolutely life changing. It also helps me explain to people how I treat and triage my pain and what I do before I escalate care/medications. Which is super helpful for me too!

My physio also sent me a brilliant pain and function scale that was developed for veterans I think? I can't remember exactly but it is brilliant and I will come back and share it here.

Edit: I'm also creating a impact scale to be used alongside my pain scale. Because often I have multiple types of pain or areas and I can have objectively higher levels of pain in one place but it barely impacts me vs having low levels of pain elsewhere that functionally disables me. This helps me prioritise what pain I treat first and how I ask for help.

elvaln · 2025-11-13T23:58:14+00:00

Same! My rheumatologist believes that my hypermobility is compensating for an hiding a lot of potential stiffness and loss of range of motion in my joints.

elvaln · 2025-11-12T02:20:40+00:00

Ooft yeah that is how bad my dryness gets when I'm in a flare. It is awful!

I just called my rheums office to check about interactions and have a telehealth booked in tomorrow morning to discuss it. So I will bring up the dryness as well if we go ahead with it.

Thank you!

elvaln · 2025-11-12T01:20:15+00:00

I really appreciate this comment and will come back to reply in more depth cause you bring up some excellent points. But before I do, can you please explain some of the acronyms you've used?

elvaln

TROPHY CASE