Isabel Kaplan

It is the first barrier to understanding. The ME alone almost nobody - i can’t count the doctors - recognizes or understands. And the CFS has so much diminishing stigma attached.

what’s in a name? everything. we need a better name and acronym than ME/CFS. As a writer w an English degree & MFA, i think about word choice a lot. this one a lot over the past year, trying to describe my situation to friends, strangers, and medical professionals.

Chart from a paper that classifies patients in an RCT according to 4 groups: cognitive responder, fatigue responder, global responder, and minimal responder. The only category with a significant difference is the global responder, with 30% of the treatment arm vs 10% of the control arm. However, 40%+ of both arms were minimal responders.

I've been seeing a lot of fuss over oxaloacetate for ME/CFS recently, a supplement that didn't work for me and caused severe heartburn, and honestly I think Fig. 4 about sums it up www.frontiersin.org/journals/neu...

thank you this is so useful - both the individual anecdotal experience and the data. so important to remember if you have me/cfs - a medicine or treatment can always hurt more than it helps. thinking that way is not pessimism, it’s self preservation

because we have to keep saying it: representation matters. the first step towards empathy is understanding; the first step to understanding is encountering.

today’s PEM brought to you (me) courtesy of yesterday’s this.

How much my providers know about my condition: Photo of tiny book (possibly the smallest in the world) How much I have to know to keep them from harming me: Photo of huge book (possibly the largest in the world)

went to urgent care yesterday w/ severe back & abdominal pain, at my therapist’s insistence, and after hearing that I have post-viral illnesses from COVID, the Dr asked, “have you tried EMDR?”

🤦‍♀️🤦‍♀️ #longcovid

a drawing of medicine bottles and the quote “you’ve failed a lot of POTS medicines.”

Drawings of pills holding out papers graded F. Text reads: It would be more fair to say the drugs failed me. I tried very hard. Also: I am not a person who fails. (If you take a long enough view, you don’t have to be, either.)

recent scribbles, inspired by a meeting w a dysautonomia specialist for which i waited 5 months. had to turn the lemons into something if not sweeter at least brighter.

#pots #dysautonomia #graphicmedicine
#longcovid

it’s almost like Long Covid is a physiological illness that can’t be healed by “retraining your brain” 🤦‍♀️🤦‍♀️

now THIS is some company to be in!!

reminds me of when in 2022 British Vogue asked me to write an essay about how Hollywood had changed in the 5 years since #MeToo, pegged to the pub of my novel NSFW, about complicity in Hollywood.

I said, “I can’t, but how about an essay on how things have NOT changed?”

we never learn.

that says everything. *sighs and groans in woman*

this is beautiful! now i need to look up/ buy French Girl

also ME/CFS! was AFAIK the biggest trigger pre-covid. and reactivation with long covid…

My first ProCreate experiment was an attempt to answer my nerve block doctor’s question about whether the “fatigue” part of my ME/CFS was similar to the way his body felt during a recent bout of 24 hr food poisoning. (Yeah. Really.) I came up with this.

#longcovid #mecfs #procreate

thank you!!! screenshotting this and going to start playing

would love that! off to check if i have the most updated app…

yes, i have the apple pencil pro! do you have any favorite brushes you’d rec? i’ve just been choosing pencils and pens and paintbrushes at random

i do have an ipad! i’m still trying to figure out what presets to even begin with, how to get any kind of handle on line weight and pressure and also whether being a lefty has anything to do with my incompetence there

just checked your profile - your work is great!! i have only dipped the tiniest toe into digital art, am so intimidated by all the settings I don’t understand. Do you use procreate?

The biggest shocker? I haven’t been seeing in 3D. Hard to draw depth if you can’t see it! #mecfs #longcovid #dysautonomia

I got a migraine from trying to draw a maple leaf. Which led to the discovery of SEVERE binocular vision dysfunction. My eyes are now very misaligned, and my brain has been shutting one of them off.

I used to write full novel drafts by hand. Long Covid has severely limited my capacity to read or write by hand. So I turned to a different form of markmaking and began learning to draw. After the nerve blocks, I began struggling more with drawing, esp with perspective and depth.

uhhhhh yeah no. how? unless they only checked in like 2
hours after and didnt do any 12-72hr after followups.

i hope so badly that they did, but…i know better than to assume 🤦‍♀️

agh! this is helpful to hear, as someone who does art at home but hasnt been sure about trying a class bc it seems like leveling way too much up exertion-wise

i’m sorry, i know it well. post-nerve blocks my binocular vision dysfunction got SO much worse -i can’t really read or write by hand, i’ve been turning to different forms of markmaking and drawing instead, but that too gets harder without depth perception. i’m pinning a lot of hopes on prism glasses

over 13 days, i had: 14 #stellateganglionblocks , 4 thoracic sympathetic blocks, 1 celiac plexus block, and 2 lumbar blocks. I entered PEM on day 3, after 2 bilateral SGBs in a row, and developed noise sensitivity (never a problem before). But things went REALLY WRONG around day 9/blocks 16 & 17.