I will be going now.
If you still want to get in touch with me, you can try reaching out to my Discord, but that too is getting deleted eventually.
You can also try reaching out to @jaybird1306 or one of the other blogs that knew me well enough to have my contact info. They should be able to get in touch with me so I can get in touch with you.
I do not have social media, but I do have e-mail, text, and Signal.
I wish everyone well.
I will miss you all and this space very very much.
If you haven’t heard, today PolyCystic Ovarian Syndrome has been renamed to Polyendocrine Metabolic Ovarian Syndrome. This change reflects that this is not a reproductive “problem” but a whole body disease.
(Text: PCOS affects an estimated 10-13% of reproductive-aged women. It is estimated that up to 70% of women with PCOS worldwide do not know they have this condition.)
The Lancet link about shift to PMOS. Spread this to everyone who works in health care now. People with uteruses and ovaries are in agony - yes, the whole body suffers a crisis every fkn month - and health care should help
Transcripted version below, for anyone who'd rather read than watch:
(Themsbloke plays two characters in the video, so I've just labelled them A and B, for simplicity's sake)
A:
Oh my fucking god. I've just realised something incredible.
If you want to erase an illness, you don't deny it exists.
You rename it.
I'll take a devastating neurological illness, one that collapses immune systems, starves muscles of oxygen, scrambles blood flow to the brain, and I'll give it a name that sounds like being a bit knackered.
B:
You mean...
A:
Chronic Fatigue Syndrome.
B:
That's unforgivable.
A:
Perfect, isn't it? Because now, when people lose the ability to stand, to speak clearly, to tolerate light, sound, touch, everyone will think they just need an early fucking night!
B:
What does it actually do to them?
A:
It destroys them. It turns effort into poison. It makes thinking feel like lifting concrete. It makes bodies crash so hard people can't feed themselves, they can't wash, they can't remember words! Some will lie in dark rooms for years.
B:
Years?
A:
Decades. Children will get it. Teenagers will lose their education. Adults will lose careers, independence, homes.
I'll make exertion Actively dangerous, where one walk, one conversation, one shower can cause a multi-day systemic collapse.
B:
That's sadistic.
A:
I'll erase it from medical textbooks. I'll defund research. I'll tell patients to Exercise, even when exercise physically harms them!
B:
So, this isn't fatigue?
A:
... What did you just fucking say to me?
B:
... This isn't fatigue?
A:
No. Fatigue is a warning light. This is systemic collapse. Hmm?
This is the body failing to recover from efforts!
This is energy that does not replenish! Huh?
This is a disease where Trying makes you Worse!!
B:
Why hasn't this been taken seriously?
A:
Because of the name. Because once you call it 'Fatigue', you give people permission to dismiss it. Doctors stop listening, government stop funding, friends stop believing, and patients stop trusting their own reality.
B:
So the label matters.
A:
The label is everything. Because when you misname suffering, you mistreat it, you mismanage it, you abandon the people inside it, and ME/CFS patients have been abandoned for generations.
B:
So what are they fighting for now?
A:
To be believed, to be studied, and to be named fucking correctly. Because ME/CFS is not tiredness, laziness, nor a fear of effort; It's a brutal, disabling, life-altering disease. And people are still disappearing, unheard, into dark rooms because we chose a comforting lie over an accurate truth.
B:
So what should we call it?
A:
Myalgic Encephalomyelitis. Say it properly.
B:
*fumbles, not even getting past the first M*
A:
Myalgic
B:
Myalgic
A:
En-ceph-a-lo...
B:
Encephalo
A:
My-e-li-tis
B:
Myelitis.
A:
Myalgic Encephalomyelitis.
B:
Myalgic Encephalomyelitis.
A:
Good.
Right! Time to invent Brain Fog!
*end credits jingle from Looney Toons plays, complete with the "That's all, folks!" written on the screen*
This week is ME/CFS Awareness Week (at least for some of the world), so shout out to all the folks out there living with this condition and here is a masterlist of every resource I've found so far on myalgic encephalomyelitis...
🔹 General info:
It’s not just ‘chronic fatigue’: ME/CFS is much more than being tired
What is Post-Exertional Malaise?
🔹 Diagnosis:
Diagnosis of ME/CFS; What You Need to Know
ME/CFS and Blood Tests – an in-depth look at what blood tests should be done to ensure your diagnosis of ME/CFS is correct, what the results mean, and when blood tests should be repeated
🔹 Managing fatigue:
Post-Exertional Malaise (PEM) – What It Is and How To Avoid It
Pacing Tactics
Ideas for Managing Fatigue (Note: This piece is sponsored by CareCo Ltd and features affiliate links)
🔹 Other symptoms:
Strategies for Brain Fog – This article is aimed at people with long-COVID but the strategies suggested may work for anyone dealing with brain fog
Sleep Tips for New Spoonies – not specifically aimed at ME/CFS but many of the tips will apply
🔹 How to cope with ME/CFS:
Energy Conservation – a Tumblr post by @rthritis
Energy Conservation Techniques; Home Management – a Tumblr post by @rthritis
How to Keep House While Drowning: A gentle approach to cleaning and organising by KC Davis [📖 book recommendation]
11 Tips For Making Meal Prep Easier to Save Spoons
The Tray™ – how to feed yourself without preparing food [🎥 video]
Tips to make showering easier when you are physically disabled – a Tumblr thread not specifically aimed at ME/CFS but many of the tips will apply
The 7 Types of Rest & How to Use Them to Feel Better [🎥 video]
The Bedbound Activity Masterlist
🔹 Treatment, diet, and lifestyle:
All Current ME/CFS Treatments
The low histamine diet – a resource from Johns Hopkins' ME/CFS clinic
Dietary Supplementation for Fatigue Symptoms in ME/CFS – a journal article looking into supplements like L-carnitine and guanidinoacetic acid, oxaloacetate, CoQ10–selenium combination, NADH and NADH-CoQ10 combination [📃 research]
Fact Sheet: Food and ME/CFS – covers what foods are best to base your diet on plus some information about supplements, weight gain, weight loss, gastrointestinal symptoms, and when to see a dietitian; by The Association of UK Dietitians
🔹 Other:
Tips for Applying for Benefits with ME/CFS [🇬🇧 UK]
Please let me know what other resources you would like to see on ME/CFS; asks (including anons) are always open and you're welcome to reblog or comment to make a suggestion.
There is no soul.
There is no special human essence.
We are not any more or less alive than anything else.
Humans were not created with (nor did they evolve into) a special role in life, the world, and/or the universe separate or unique from other animals.
The world existed before us. The world will exist after us.
We are not some end point of evolution.
We are not on some linear path towards perfecting ourselves via evolution or our own machinations.
Humans, including you, are animals in the exact same way all other animals are and have been animals.
Humans, including you, are interconnected with the planet and everything on it in the exact same way all other animals are and have been.
Humans are not more or less superior to other animals.
Humans are not incomparably good or bad as a species.
Species like homo sapiens are rare, not singularly unique.
Sentience is not unique to humans.
Intelligence is not unique to humans.
Morality is not unique to humans.
Culture is not unique to humans.
Tool use is not unique to humans.
Tool creation is not unique to humans.
Language is not unique to humans.
Agriculture is not unique to humans.
Domestication is not unique to humans.
Civilization is not unique to humans.
War is not unique to humans.
Globalization is not unique to humans.
Etc etc etc.
Even the ability to defy "nature" is not unique to humans.
In fact, we have not been the first to do any of the things I listed.
Most of these were achieved before homo sapiens came into being.
We are a small part of animal kind.
We are a tiny part of Earth's history.
The faster humans can accept this the faster we can move on to more important and pressing matters.
Join the Total Woman Victory Editorial Team on Monday, April 20 at 8PM EST for a Twitter Space! 💚
We’ll be talking TWV7: discussing the theme, how the submission process works, what a helpful proposal looks like, and taking questions! If you’re not able to make it, remember you can always DM us with any questions you have at any time 😊
We’ll see you then! 🌻 Link below!
Proposals will CLOSE in SIX DAYS on 4/22 at 11:59PM EST for Total Woman Victory Volume 2 Issue 3: “Our Earth, Ourselves” ☀️🌍🌿
Submit short stories, informative or argumentative articles, poetry, book reviews, interviews, art, and more at totalwomanvictory.com/submit.
Be sure to check out the newly updated section on our Submit page about contributor expectations for more information on contributing!
“Our Earth, Ourselves” unearths the inextricability of the oppression of women and the destruction of the earth. Oceans, nations, and even Earth itself are commonly referred to with female terms—from “Mother Nature” to “Mother India”—while extractivism, resource depletion, biospheric pollution, and the conquest of land mirror the male conquest of female bodies. Consumerism—including booming industries such as meat, makeup, fashion, and technology—is connected to the subjugation of women. Imperialism exacerbates both female oppression and Earth’s destruction, deeply tying Third World women to their environment. Over time, scientific data has vindicated ecofeminists who drew these connections decades prior. This issue further concerns female food insecurity, consequences of AI, denial of land and territorial displacement, exploitation of land laborers, the slave trade, and more. How does the destruction of our Earth affect our very bodies?
As the tree canopy closes in late May and shuts out all but the faintest rays of sunlight, the last of the spring ephemerals cede dominion of the forest floor to an onslaught of ferns, mosses, and fungi. By mid-summer, these shade-tolerant organisms are the dominant life-forms of the deep woods. A sampling of some of the fern species in the local woods (from top): sensitive fern (Onoclea sensibilis); intermediate wood fern (Dryopteris intermedia); Christmas fern (Polystichum acrostichoides); New York fern (Thelypteris noveboracensis); narrow-leaved glade fern (Diplazium pycnocarpon); interrupted fern (Osmunda claytoniana); bracken fern (Pteridium aquilinum); and northern maidenhair fern (Adiantum pedatum).
