#Millions Missing

[disasterhimbo]

Everyone should watch Unrest (2017). It has captions and subtitles in many languages, so you can probably watch it even if English isn’t your first language. Please, if you ever have an hour and a half of spare time, please watch this movie:

It’s all about ME/CFS, an often-debilitating chronic illness that’s one of the most frequent conditions people develop after acute covid infections. The filmmaker, Jennifer Brea, has it, and she interviews many other people who have it, their families, and doctors, as well as going into the history of the illness. It’s important to watch this to support your friends who have it, and at this point, some of your friends probably do have it.

Edit: content warnings for discussion of suicide and suicidal ideation in the movie (but it ends on a hopeful note).

[crazycatsiren]

I think, even from within the disabled community, everybody has got to stop dismissing and downplaying ME/CFS as "it's just chronic fatigue".

It's a neuroimmunological disease. It's a devastating chronic illness and physical disability, described by those who live with it as a "living death". It's no less debilitating than multiple sclerosis and it's still far less understood. People have died from it (by suicide and not by suicide). Numerous lives have been wrecked by it. There's no medication for it and no proven effective treatment as of today. Recovery rate is optimistically 6%.

[jesusonafrickinboat]

May is ME/CFS Awareness Month!

ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Chronic Fatigue (CF), a symptom of many chronic illnesses, is not the same as Chronic Fatigue Syndrome (CFS). There is a push for ME/CFS to be exclusively known as Myalgic Encephalomyelitis (ME) in the future

ME/CFS is a complex, fluctuating, chronic medical condition affecting multiple body systems and symptoms can change unpredictably

Post-exertional malaise (PEM) is the hallmark of ME/CFS

More on symptoms: Symptoms of ME/CFS

ME/CFS affects an estimated 836,000 to 2.5 million Americans, the majority of those diagnosed being AFAB

An estimated 90% of people with ME/CFS are undiagnosed

About 25% of people with ME/CFS are bedbound or housebound for long periods

Most of those diagnosed never regain their pre-disease level of functioning

The root cause of ME/CFS is unknown

Possible triggers include: viral infections (such as mono, the flu, or COVID-19), bacterial infections, physical or psychological stress, and immune system changes. There may also be a genetic component

There is no cure or approved treatment for ME/CFS

However, some symptoms can be treated. For example, PEM is treated by pacing. More on treatments: Treatment of ME/CFS

ME/CFS costs the US economy about $17 to $24 billion annually in medical bills and lost incomes

The ME Association and the CDC have more in-depth articles on ME/CFS for more information

[pandemichub]

I'd love people to write in in response to this post. I'll share my own story to get things started.

Before the pandemic started I had just started to get on the right track after an apartment fire 3 years ago at the time. Everything was thrown off by that and I developed PTSD from the event. My health and mental health conditions were well managed, including my agoraphobia and I was in good health.

Even as I sheltered in place for approximately 3 years and only did essential activities and went to essential places I still contracted covid. Sadly my carer brought it into my home and I've suffered with long covid immediately subsequent to my acute infection ever since (August 28th 2022).

It's turned my life upside down. I had planned on starting to ride my bike and now it sits in my apartment untouched. I struggle to walk, sit and balance especially for prolonged periods, at the ripe age of 31. An issue I didn't have before remotely.

And yet doctors keep mentioning anxiety, that it's not conclusive despite not studying up to date literature and published research on covid and long covid. I have no purpose for my shoes much either because travel is taxing on my body. In fact I've been at my mom's house for almost a month because I'm not well enough to return home.

Even paid my rent and electric digitally. My patio remains unoccupied, partly because I don't want harassment about wearing a mask outdoors but also would rather not see my neighbors. One of which harassed me and my carer after coming back from a very stressful dentist appointment with appalling covid safety and not having slept that day.

My computer collecting dust, partly due to the winter storm a couple months or so ago that knocked out my power and messed up the boot sequence, but also not being able to sit at and use it without swaying, heart palpations, feeling faint, and for long periods.

My kitchen sink, cooking utensils and ware goes unused most of the time because my new illness has largely robbed me of the energy and focus to prepare and cook meals. And my apartment tends to occupy me or my one support staff because of my fear of a repeat incident of someone bringing disease into my house. A disease that if I catch again well may kill me, or, faster.

My shower usually is dry as a bone, baths and showers leave me flaring and wiped for days. My hair products sit frequently untouched as I'm too exhausted to brush, braid, cover and moisturize my hair. As do my free weights and elastic PT bands. Ever since I got sick I lack stamina, experience shortness of breath (I had asthma but it was well controlled), my heart rate spikes and I can't exercise in any way that would hit targets or be beneficial.

And still my doctor recommends physical therapy despite telling her all this. And worst of all won't give me a long covid diagnosis. She kicked me to specialist.

Specialist who are already booked out, and whose schedules and patient lists keep lengthening because of the sharp and continued rise in long covid. Knowing it could take months for me to get a diagnosis this route and even longer to get new disability aids I need if I even get documents and approvals at all.

That I can't possibly afford because I'm dirt poor. To add pain to injury, I was disabled before this. And I understood the seriousness of covid and long covid. And took every precaution. But in a society that's a threat to life and safety, I was only as safe as everyone else was and is.

Which means I wasn't and still am not. Not only do I have whatever implications and damage short and long term from my first bout of illness, I constantly have the threat of reinfections and death everyday.

And finally, I have no use for many of the chairs in my home as my brain, neck and spine struggle to keep me upright. My body is in some ways new to me and after 3 plus decades in it, I have to learn it all over again.

And am confronted with no longer being able to do what I once did (possibly ever again) with great sadness nor test limits without high risk and unpredictable results. And it is a terrible, deeply off putting, arrogant and cruel insult to hear people write off or outright deny long covid exists and call long covid a cold. It fucking isn't.

Anyway that's my story.

[sunrequiem]

Blueprint for Allyship: Health Update and How You Can Help (pw)ME

Hoping, praying, expecting, wishing, manifesting, longing for folks to pay attention to this post and read to the very end! Help! This is a call to action and a cry for solidarity. ME advocates cannot sustainably do this alone, so here’s a blueprint for allyship. See my previous posts if you think ME is “me” capitalized and I’m just screaming for attention. View this post on Instagram A post…

[nerianasims]

We desperately need help. We can’t go into the streets shouting and shutting things down regularly. And so we’re very easy to ignore. The government can pretend we don’t matter. That we don’t even exist.

Thinking about us is scary. The next time you’re ill, this could become you. So people look away. When really they should be saying, “Holy shit, the next time I’m ill, this could become me, so let’s get a cure!”

[moxie-girl]

im so normal abt sibling relationships in media i swear

[crazycatsiren]

I'm just a girl, who wants to do lots of things, trapped inside a body that wants to do nothing.

[wormy-business]

I saw this question posed on tiktok, but I think Tumblr would really enjoy it too.

If a fae creature offered to give one million dollars for a bone FROM YOUR BODY chosen at random, how many bones would you allow them to take?

Light clarifications; The fae is not the one choosing the bones. The bone is taken at random. Each bone, no matter the size or importance, is worth a full million dollars. You must also declare the exact number first, you can't go bone-by-bone. You either say 2 or you say 10, you can't work your way up to a higher number. The bones are removed instantaneously, and the money is given immediately as well. You will not get in government trouble for acquiring the money.

Tell me in the tags/replies how many bones you'd let the fae take. And as always, reblog for bigger sample size.

[ruthfeiertag]

I understand that there are people who have legitimate medical conditions that prevent them from wearing a mask. So, in addition to what was written above, I’ll point out that those people with complicated health issues are just that many more reasons for the rest of us to mask up even when we feel well and, for everyone’s sakes, to STAY HOME if we don’t. And we all need to pressure employers to encourage their workers not to come in when they’re ill and to give them enough sick days do they can afford to stay home. I know getting this right isn’t easy, but we can do it.

I know I'm preaching to the choir but like. You know you can wear masks for other sicknesses. Not just covid. If you have the flu or a cold or a stomach bug you can still wear a mask to help prevent the spread of it to others if you insist on going out! I just think it's the polite thing to do

[triumph-of-adaptation]

Studio vinciguerra

Buy tees via infographia.bigcartel

@studiovinciguerra

One of many crises but one close to my heart, a shirt attempting to communicate how dire M.E. can be. Available cost price for people with M.E./carers. There won’t be much profit but whatever there is will go into funding more propaganda.

[guiiay]

yeah... yeah

[animatedtext]

requested by miss-million 

[kaiju-krew]

monarch made him merch

[masarukt]

And also remember that letting people work from home, and attend virtual concerts, and go to meetings via zoom, and go to conferences virtually, and go to religious services virtually, and go to all kinds of other events virtually and thus, allowing for disabled and chronically ill folks to participate in society like never before…

But now, folks want to take so many of those options away all over again…isolating disabled and chronically ill folks from society again. It’s cruel…taking something beautiful like that away from us after showing us that something like that was possible this whole time since we have had the technology. And now that we know for a fact that the technology exists, non-disabled and non-chronically ill people want to take that away from us?

It’s beyond cruel.

If you’ve never been house bound or bed bound for months or years on end like I have? Or like others like me have? Then you have no idea what this feels like. None.

[crazycatsiren]

"Having this illness destroyed my life" and "it's taught me things that I'm never giving back" can in fact coexist.