#and other connective tissues

[noxious-fennec]

C!Q + vylette's fit from Jawbreaker

(aka an idea I've had for every conceivable holiday for months and decidedly couldn't put out on an appropriate date)

[evocatiio]

if chibnall was the one writing this season you lot would be talking VERY differently

[short666bread]

Their fridge

[primrosebitch]

honestly i've spent so long being chronically ill that it's become a large part of my identity and i don't know what i'd do if i got better, i don't enjoy it but i almost don't want to get better because of how ingrained it is in my life, like get better as in be cured not as in reducing symptoms, which i do want, being able to do more stuff would be great.

[skrunksthatwunk]

ohhhh this essay was like. definitely plagiarized at least a little bit (<- peer reviewing in the club tonite)

[variousqueerthings]

You like Doctor Who AND Black Sails???? Absolutely chef kiss, cannot believe we share a brain

yeah, I did for a hot second have a separate blog for Black Sails because I actually made this one to be specifically not fandom-related (3 years on and... well.....) so I'm slowly bringing my black sails posting over here instead, fuckit!

thing about Black Sails for me is that on the whole I find it such a perfectly constructed bit of storytelling, with critique that has already been formulated better by other people, that I never know quite what to say about it that hasn't been said, youknow?

it's the show that I've watched that has felt the most like reading a book, with every season leading into one another and the themes introduced in s1 wrapping up in s4, and every piece interacting with one another, and you have to trust that the questions and thematic concepts raised at the beginning have real weight and will go places, which in this day and age of TV is a big ask, because most of the time a TV show has to work one season at a time/doesn't plan that far ahead, lest it get cancelled and/or stretches into depressing perpetuity

(or it's Doctor Who of course, which is just its own monster/mythology at this point, moreso than perhaps any other show, I'd say including Star Trek perhaps...)

but yeah, Black Sails. that's a journey that really matters, you get to the end and you've been holding your breath since probably s2, and you're realising that this is something that TV can do -- I think other shows that have manage the closest (for me) have been miniseries like Chernobyl or Pride & Prejudice and the like, because they've had that clear knowledge that this is the episodes they have, this is where it starts and ends, these are the ways everything talks with one another (Chernobyl and Black Sails especially have in common that the ending makes one want to go back to the beginning, because it's a realisation of OH THIS IS WHAT YOU'VE BEEN SAYING FROM DAY ONE!), but I've not seen it as strongly or as well-constructed (or... finished for that matter) in anything that had multiple seasons like this

+ youknow. multiple polyamorous relationships in different structures, multiple ways of discussing connection and love none of which are more important than the other for being a specific kind, multiple deconstructions of masculinity in popular mythology (pirates), banging sea battles and sword fights, plot moments that take your breath away, political commentary that makes you punch the air, and bits that have you going "OH I READ THIS BIT IN TREASURE ISLAND!!!" (but also you don't need to have read treasure island to watch it... potentially OH YEAH THIS GUY WAS A CYBORG IN TREASURE PLANET 😂)

Black Sails is kind of special. Truly one of a kind

EDIT: ALSO WANTED TO SAY HELL YEAH HIGH FIVE FOR BLACK SAILS AND DOCTOR WHO!

[theboyofalltime]

Got my first mobility aids today, but also am scared to use them when I need them incase anyone bullies me for “Faking it.” Perhaps I should just go for it.

[akkivee]

Hi, Vee! Did you see the trailer for the Shadow The Hedgehog Dark Beginnings 3 episode animation? 👀

I DID LOL i was just about to make a post about it actually like the poster alone had me shocked when it was revealed like

EMERL???????? IN THE YEAR 2024???????

LOOK ITS TEAM DARK!!!!!!!!!

THE ROCKET FROM SA2????? THATS GERALD POSED AS HE WAS IN HIS FINAL MESSAGE DAMNING HUMANITY??????????

MARIAAAAAAAAAAAAAAAAAAAAA

and then the trailer itself lmao i was in shambles in the middle of the king records panel pls watch some peak y’all lmao

besides the heart wrenching moment with maria, something i particularly liked about the trailer was the way shadow and emerl were being framed as enemies of a similar ilk like

shadow with his red energy??? kinda unnatural glowing quills???? emerl with a very familiar rich blue glow to his robotic eyes???? emerl’s way of fighting mirroring shadow’s in those last few frames????

like it’s riffing a bit off of shadow and sonic’s rivalry while highlighting their manufactured origins, the lab with all the energy (chaos energy maybe??), AND I LOVE TO SEE IT LOL

[madsciencestudent]

Writing and messing with early scenes for Idyia and Rubra-Harenas after having SO MUCH fermenting in my head for like two months now is hard. Because most of me is re-reading what I spewed on the document is going 'Hmmmm.... Are they being too open and friendly with each other WAY too soon?'

And then there's the rest of me going 'YOU TWO ARE SUPPOSED TO BE BEST FRIENDS!! HURRY UP AND BE FRIENDS ALREADY!!!'

[compacflt]

wip wednesday: trying to solve my narrative issues by spending a fuckton of time mapping them out

[salt-baby]

What EDS treatments are effective?

you all responded really well to a previous medical education post I did, so I wanted to try something new: a series on research papers!

today I’m looking at “Ehlers-Danlos Syndrome: An Analysis of the Current Treatment Options”(2019) by Song et al

tldr:

when researchers (well, doctors) looked at the medical records of 98 patients with EDS of any subtype, from their physical medicine and rehabilitation (PMR) clinic, to find out which medications improved, did nothing to, and worsened symptoms, they found:

- complimentary and alternative medicine and opioids were most common for patients to try, with NSAIDS, physical therapy, and bracing/splinting close behind.

- the following improved symptoms in at least 60% of patients: massage, bracing/splints/orthotics, ibuprofen, a nerve block, platelet-rich plasma, prolotherapy, taking a combo of hydrocodone and acetaminophen, steroid injections, oral steroids, baclofen and botox.

- physical therapy improved symptoms in 43% of patients and heat in 58%.

- surgery, going to a chiropractor, acetaminophen alone, and drugs for nerve pain (ie duloxetine, gabapentin, tri-cyclic antidepressants) tended to have low efficacy (less than 30% of patients had an improvement in symptoms).

Note that there may have been a bit of bias in terms of who participated in the study, that it’s not certain how reliable the medical records are, and that there’s a bit of ambiguity in the results because they included multiple subtypes of EDS.

if you want me to walk you through the whole paper, and learn some skills for interpreting papers on your own, keep reading!

I chose this paper for a couple reasons: its open access, easy to read, and has very clearly reported and well defined results. it also has very simple statistics (which is great, because thats my least favorite part). 

the introduction provides some good background information on EDS, although a few things are of note. One is that they refer to a phenomenon called pain sensitization or central pain in paragraph three, which they don’t go into too much detail on. This topic is a candidate for another post in this series, since it’s surprisingly little known. in short, this has to do with the body adapting to being constantly in pain, and as a result, an abnormal pain response develops (3). I don’t want to go into it too much here, but if this part was confusing to you, that’s what it’s referring to. 

additionally, they mention the so-called three stages of hEDS, which I traced back to this paper (4). While this researcher has a lot of publications in heds, I find it hard to believe that a sample size of only 21 (very different!) patients is enough to firmly define three stages that all patients go through. Plus, their ages are never reported, and “stiffness” is defined as just “not hypermobile anymore”. IMO, not very strong evidence.

Looking at the methods, most of it is as I said above. This type of paper is a retrospective review, meaning they looked at data that already existed, did analysis on it, and drew conclusions on it. Reviews in general can be really useful when you’re first starting out on a specific topic, and I recommend people start there. 

Another thing about methods is they used a Mann-Whitney U test, which, fair warning statistics isn’t my strong point, but I’ll do my best. For more resources, look here and here (5) (sidenote, this whole college-level statistics textbook is open access and very practical, and the author is clearly very passionate about teaching.). For the purposes of this paper, just note that the P value in the last column of their results table indicates significance, ie whether the data they got was any better than random chance. Significance in research is usually defined as a P value less than 0.05. The lower the P value, the more likely the results weren’t just random chance. Any P value over 0.05 is generally considered just random chance. 

That’s really important for interpreting these really beautiful results tables. Make sure you pay attention to the little “Significant? Y/N” column. If there’s an N, there’s not enough evidence to prove anything about that treatment one way or another.

Note that when you’re interpreting the results, just because it didn’t work for most people in this study doesn’t mean it won’t work for you. I really like diclofenac gel for joint pain, but only 24% of these participants had the same experience, and that result had a P value of <0.0001!

There’s not much to say about what the authors wrote as their interpretation of the results, which I think was sound. 

Regarding limitations of the study, I think there’s a few. Overall, my opinion is that the paper is decently strong evidence of how effective certain treatments are, especially when combined with other, more specific papers. But for limitations, the sample size is a bit small, but for EDS, pretty good. 

There’s the issue of almost all participants being women, but that’s a product of EDS affecting female people more strongly than male people (1). To be specific, both afab and amab people have an equal chance of inheriting EDS, because although the exact gene hasn’t been discovered, the way it’s inherited has been (an autosomal dominant gene) (1). It’s possible that sociological factors are at play, but the author’s conclusion (and my own) is that it’s likely one of many biological factors that makes EDS worse in female people than male people(1). I’m using female/male instead of afab/amab because anecdotally, some ftm trans people with eds have found their symptoms improved with testosterone (which one person in this treatment efficacy study also found).

This study also mixed all the subtypes together, with only 76 of the 98 participants having diagnosed heds. 2 had other subtypes (ceds and cveds), and 20 were unspecified EDS. That muddies the results a bit, because although the subtypes have some things in common, they can also be pretty distinct. For that reason, I would’ve liked to know what happened when they separated by subtype and ran their significance tests, but it’s not the biggest deal to me that they didn’t.

Then there’s the issue of the sample itself, which was taken from a PMR clinic. Who goes to a PMR clinic? people who live within a reasonable distance and have the money to both get the referral and pay for the specialist. Additionally, people may be hesitant to tell their joint doc about EVERY treatment they tried, and that doc may not have written everything down. Plus, this study only includes those diagnosed with eds (which again requires money), and therefore may not represent EVERYONE with eds, diagnosed or not. In research, these things can be really difficult to control for, and in my opinion, there’s not much the researchers could’ve done to fix this without massively changing the study. 

Additionally, all these medical records would’ve been made by the same few doctors at this clinic, who may have had biases or writing quirks that impacted the data. Plus, the doctors who wrote the paper also probably wrote some of those medical records. That’s not unusual, but definitely not ideal.

I did notice cannabis was missing from the list of treatments (although cbd was not), likely reflecting it’s illegality and controversy. patients don’t want to tell their doctors that they did illegal drugs, and researchers don’t want to publish about illegal drugs either. Still, it’s worth pointing out that cannabis has promising efficacy for eds pain (2).

In conclusion, I do really like this paper, and I think it’s a great intro to both research and EDS treatments. From here, there’s plenty of more specific papers about specific treatments, and its a great way to get started.

This series will be navigable by the tag “salt baby reads”, and I really do mean to encourage learning and questions with this. If you don’t understand, or (respectfully) disagree, please feel free to send me an ask. I want to start discussions about this, because I really do think its important for people to be educated about the conditions they have, so they can make the medical decisions that are right for them. Let me know if you liked this!

Sources:

1.  “Ehlers–Danlos syndrome hypermobility type and the excess of affected females: Possible mechanisms and perspectives” (2010) Castori et al. 

2.  “Use of complementary and alternative medicine by patients with hypermobile Ehlers–Danlos Syndrome: A qualitative study” (2022) Doyle et al.

3. “Pain in the Ehlers–Danlos syndromes: Mechanisms, models, and challenges” (2021) Malfait et al. 

4. “Natural history and manifestations of the hypermobility type Ehlers–Danlos syndrome: A pilot study on 21 patients” (2010) Castori et al. 

5. “Handbook of Biological Statistics” (2014) John H. McDonald

[horsemage]

In some horrible horrible twist of fate my left knee is doing much better & I’ve started to fix my tragic hip flexors but I just possibly partially tore my right hamstring. not much. but it hurts to flex my knee.

[theheartofmine]

i’m so glad i found a doctor who actually listens to me and has immediately helped me try and figure out what’s going on with me. i’m tired of feeling bad but i have avoided seeing doctors for years because i was so scared they wouldn’t listen to me or blame it on my anxiety or other mental health issues and it is just. so nice to be listened to.

[semiotomatics]

it appears i may have tmj disorder

[cubicpeebles]

Fun Fact!: The webs of Rot surrounding Spool's can aren't strong enough to consume creatures on their own, meaning that Spool usually comes to finish the job!

[macabremadnesss]

My doctor said I cant have ehlers danlos syndrome because Im not freakishly tall and skinny

like okay miss "mEd sChOoL gRaDuaTe" fucking PhD havers😪