#Millions Missing

[ruthfeiertag]

THIS ☝️.

If you've ever told a person who's had to be bedbound for a period of time that you wish you could "just stay in bed", DO IT.

Stay in bed. For days. But don't get up if someone needs you to, or you get bored, or you get antsy. Don't do anything other than rest. Just lie in your bed, whether you need to get stuff done around the house or socialize or anything else "productive". You'll have to cancel on people, you'll disappoint them, they won't understand.

And if you're thinking, "well, i CAN'T just be in bed. There's stuff that has to be done - I have plans", maybe ask yourself why you assumed a disabled person doesn't have plans or things to do or desires.

[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]

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

[m-e-and-more]

Not all #LongCovid is #myalgicEncephalomyelitis.

While its super important to raise awareness of the simularities of the #millionsMissing with #MECFS and #millionsMore with #LongC it is also essential to recognize that only a subset of #covid #longhaulers meet the criteria for a diagnosis of ME.

ME aka #ChronicFatigueSydnrome is not the same as #chronicFatigue. The defining symptom of ME / #CFS is #PostExertionalMalaise or an exhasurabtion of metabolic, neurological and immune dysfunction symptoms 24-48 hours after exertion.

When you are talking about long covid patients who experience #PEM you should talk about MECFS because that is what these patients have.

When you are talking about long covid patients be clear that only the subset with PEM have MECFS.

It is important for patients with long covid to receive the correct diagnoses, because while there are no FDA approved treatments for ME, many commorbidities do have effective medication options. Management of ME must also be tailored based on a patients commorbidities.

Patients with MECFS and post viral fatigue syndrome must not be prescribed GET or CBT. This includes all long covid patients with PEM.

Long covid patients who experience PEM should be advised to #StopRestPace and informed about the importance of pacing agressively not just to prevent symptoms from fatigue but to prevent PEM in the following days. This is regardless of whether they have PVFS (less than 6 months post covid) or MECFS (more than 6 months)

Because long covid is a broad category that encompasses patients MECFS #MCAS #fibromyalgia #POTS #dysautonomia #autoimmune and #autoinflammatory diseases in many combinations the prognosis for long covid patients is much more variable than that of ME patients and recovery is more likely in early stages of ME, long covid patients who recover should not generalize their experience onto MECFS patients more broadly and should continue to support MECFS research.

MECFS patients have decades of experience with pacing, medical gaslighting, chronic illness, housebound and bedbound life and more. We hope that #covidLonghaulers will #LearnFromME and ally with us to end #postViralIlness

[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!”

[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

[moxie-girl]

im so normal abt sibling relationships in media i swear

[crazycatsiren]

ME/CFS isn't a rare disease. It's estimated that 3.3 million people in the United States have it.

Before the COVID-19 pandemic skyrocketed the numbers and finally brought the public's attention to it, not only was ME/CFS poorly understood and its research underfunded, but also many people, including a large percentage of the medical community, didn't even believe it was real. ME/CFS patients, especially women, were still being diagnosed with hysteria in the 2010s.

ME/CFS is now starting to be classified as a neuroimmunological disorder. Its exact cause is not yet known, but between 60% and 80% of cases the onset is triggered by a viral or bacterial infection. It's is a biological disease, not a psychological/psychosomatic condition, and is not due to deconditioning.

[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.

[m-e-and-more]

There are #MillionsMissing with #MyalgicEncephalomyelitis. Your #friend, your #family, or your #lovedOne sent you this because they live with an #incurable #untreatable #chronicIllness and #disability.

#MECFS is a misunderstood disease. Many people first hear it by the misleading name #ChronicFatigueSyndrome of #CFS but #MECFS is about so much more than the #dehbilitatingFatigue it is a #neuroimmunological condition thst can affect many organ systems across the body.

In particular it affects the #mitchondria stopping rhem from making the #ATP essential for life. This #mitchondrialDysfunction is worsened following phsyical or mental exertion. This causes the defining symptom of #MECFS #PostExertionalMalaise

#ME can also cause #neurological inflammation leading #migraine and #FND as well as #dysautonmia like #POTS that causes abnormal heartrate, bloodpressure, and temperature responses to everyday tasks like standing or bathing.

In short it is a severely dehbilitating #neuroimmunological disease and your loved one needs your support to #StopRestPace and treat their body right before it is too late. #severeME is as dehbilitating as late stage AIDS. You may be able to help save someone from this #livingDeath if only you take the time to learn and care.

I urge you to learn more about ME. The informstion here only scratches the surface. The Open Medicine Foundation @openmedf. ME Action @meactnet, Emerge @emergeaustraliainc, and The Hummingbird Foundation are all great places to start. As are my blog, instagram and resource page.

Thank you for taking the time to learn and read about this disease. I and the #MEcommunity are grateful to everyone who is willing to #learn how to be our allies.

[sunrequiem]

When I Talk About the Pandemic, I am Ghosted

I get it. We're tired of living in pandemic mode. But this doesn't bode well for those who are high risk in our communities.

I’ve been posting about the dangers of long covid, and the fact that the pandemic continues to disable and kill thousands of people each day. People get awkward about it. They leave me on read, they stop engaging, and I feel like I am speaking to the void. I know it makes people uncomfortable, because we’re in the era of the great forgetting. We want to forget that the world ever saw covid…

[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.

[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.