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crazycatsiren · 7 months

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You know what fries my pancakes? Self proclaimed "health experts" on Instagram who didn't even go to medical school getting on my posts about flare-ups and giving me a lecture on ME/CFS being "just a set of symptoms", and claiming that once I find the "root cause" of those and "re-balance" them (whatever that even means), my chronic fatigue will disappear and I will be all well again (seriously, wtf).

As if that's how any of this works. If it were that easy, lol, not only would I have stopped being disabled and chronically ill 2 and a half years ago, I'd be rich by now, with the great knowledge of a magical miracle relief from ME/CFS for millions of people worldwide.

Scientific fact: the root cause of ME/CFS is ME/CFS. ME/CFS is a neuroimmunological disorder that currently has no cure and no one set of effective and approved treatments. On the optimistic side, approximately 6% of patients recover from it, and that's not even necessarily a 100% complete recovery. Medical professionals still can't do much for us as of 2023. If anything actually worked to alleviate our suffering, we would've all done it ages ago. There's nothing anyone can offer that we haven't thought of and tried already, fucks' sakes, Christ's fucks.

To act like you know more about our bodies and our illnesses than we do, toward those of us whose lives you have absolutely no idea about, whose daily struggles with a debilitating disease you can't even see, to have never walked a minute in our shoes, is incredibly invalidating and not to mention ableist.

#ableism #ableist bullshit #ableds stfu challenge #disabled #spoonie #cripple punk #me/cfs #chronic illness warrior #chronic fatigue warrior #millions missing #no spoons only knives #unsolicited advice

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m-e-and-more · 1 year

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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

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jesusonafrickinboat · 1 year

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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

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pandemichub · 11 months

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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.

#Long Covid #Covid sequela #Sequela #Long Covid Advocacy Ireland #Guus #guustweet #Stories of the pandemic #Millions Missing #Illness #Chronic illness #Complex Health Conditions #Disability #Disabled #The pandemic #Public Health

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sunrequiem · 10 months

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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…

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#ableism #allyship #Blue Sunday #chronic illness #contested illness #disability justice #health equity #lived experience #long covid #mecfs #medical gaslighting #millions missing #myalgic Encephalomyelitis #public health

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oystertongue · 2 years

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social scientists studying medicine have been using the term "contested illness" to describe me/cfs and other marginalized illnesses for maybe 15-20 years now. the term flags controversy - or, as some researchers put it, ambiguity - in the medical literature around an illness.

Social scientists studying medicine have been using the term "contested illness" to describe me/cfs and other marginalized illnesses for maybe 15-20 years now. the term flags controversy - or, as some researchers put it, ambiguity - in the medical literature around an illness. "Contested" here describes not just disagreement about the finer details of etiology or treatment, but wholesale doubt about the existence of the illness as a distinct and discrete medical entity - contested illnesses are ontologically contested.

A useful concept? well...maybe. (No. It's no.) Describing an illness as "contested" necessitates that we reproduce the medical literature as genuinely ambivalent, and in the case of me/cfs, this is downright misleading. We certainly do not know everything about me/cfs, but there *is* robust evidence for immunological and neurological abnormalities among me/cfs patients. There has been for 30 years. and the evidence that pwme/cfs are really experiencing something else entirely - depression, or deconditioning, or whatever - is comparatively extremely thin. Like...cheesecloth.

On the surface, it might look like the medical lit contradicts itself, but we as researchers can't this at face value. we know that medical research is political, mired in social and institutional controversy, subject to bias and manipulation - this is not news! but the term 'contested illness' captures none of this - in fact, it reproduces more controversy where there should be less. There's a lot we don't know about me/cfs, but the "contested illness" framing more often than not elides the fact that there's also a lot we DO know. framing this illness as wholly mysterious is misleading, and ultimately does a disservice to patients, who suffer both from a debilitating illness and from its marginal, stigmatized status.

Me/cfs is just one of many illnesses that gets glossed as 'contested' - what are we missing about the others? can we actually contribute to resolving these debates if we're hanging our whole analytical hat on the notion of controversy?

#meawarenessday #may 12 #mecfs #chronic fatigue syndrome #myalgic encephalomyelitis #meaction #words #mine #diss blogging #millions missing

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nerianasims · 1 year

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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!”

#me/cfs #millions missing

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moxie-girl · 2 months

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im so normal abt sibling relationships in media i swear

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nerdpoe · 8 days

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"I hired him with a bag of hot cheetos."

"You...hired who?" Joker asked, looking around.

"My bodyguard from my hometown. I hired him." The hostage said, actually sounding bored.

"...There's no one here but you and me, kiddo, and-"

"You and I, actually. His name is Phantom, and he's here right now. Bye."

Then the kid disappeared. Literally. Him, and the bomb he'd been strapped to.

Or; To soothe his parents about his decision to move to Gotham, Danny lied and said he'd bought Phantoms services as a bodyguard with a bag of hot cheetos. Now, whenever he gets into trouble, he just goes invisible and intangible and nopes out.

#dpxdc #dcxdp #dp x dc #dc x dp #phanfic #story prompt #danny disarmed the bomb and left it on top of the police station with the batsignal on it #it'll be fine #besides he has a million better things to do than be a hostage #Tucker's debut on that soap opera is coming up and danny isn't gonna miss it

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machinerot · 4 months

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#my art #you know he was being a little shit #harry du bois #kim kitsuragi #harrykim #disco elysium #disco elysium fanart #this is the first drawing ive managed to finish in over a year (we dont talk about the 3 million wips)#so thank you gay people for getting rid of my art block 🫶 i love you #i didnt use a reference though so apologies if the proportions look a bit wonky but GOD i had so much fun making this #ive missed Enjoying doing art. like actually enjoying the process and not just impatiently rushing for the finished piece #like maybe art IS fun..#crazy. anyways #this sideblog is brand new so i doubt people will even see this but!! if you do then i should have some more DE art on the way :-)

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kaiju-krew · 24 days

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monarch made him merch

#spending millions of taxpayer dollars on making goji merch of his wife to keep him happy enough until she returns is a good idea trust me #didnt miss her at all btw #nuh uh #godzilla #mothra #mosugoji #mothzilla #kaiju #my art

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crazycatsiren · 1 year

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May is ME/CFS Awareness Month. 💙

#disabled #spoonie #cripple punk #me/cfs #millions missing #still here still fighting #chronic illness warrior #chronic fatigue warrior

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m-e-and-more · 1 year

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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.

#myalgic encephalomyelitis #mecfs #me/cfs #me is not just chronic fatigue #chronic fatigue syndrome #chronic fatigue #chronic pain #chronic illness #chronically ill #millions missing #millions more #long covid

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weaponizedalibi · 7 months

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Erm guys I think she might know how joan of arc felt...... lol.........

Made in flipaclip, edited in cap cut. Song is Bigmouth Strikes Again by The Smiths

#fnaf #my art #five nights at freddy's #cassidy fnaf #fnaf missing children #william afton #purple guy #springtrap #glitchtrap #i am not listing all of the characters william has a million names alone #animation #animation meme

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shepscapades · 5 months

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49. Moon Waltz - Piano Version — Cojum Dip

Tuna, i don't know HOW you picked this song but it's literally one of the most heart wrenching things on dbhc Tango's playlist so. congratulations. i think <3 I think I said ages ago in some tags that Tango was about to get the dbhc Etho Angst treatment, and i got very quickly distracted/consumed by Destruction and Doc/Xisuma related Angst, but boy oh boy am i glad i get to finally hit on a little bit of this poor man's trauma LDFKJGDFG

I'l try to keep this brief but. I'm insane enough about the hermitcraft season 8 finale as is, and even more than that i'm crazy enough about Tango's hermitcraft season 8 finale, and then on top of all that, you're telling me a jaded, bitter android whose characterizing moments of anger and failure are carried on his sleeve is the same android who tried to be the hero and save his friends, only to let an oversight be the reason he not only fails, but destroys his body in the process???? ?? ? A machine who isn't supposed to make oversight mistakes???? A machine who somehow let a rabbit be the reason he failed ? ? ??? I dont know what you expected from me other than to be extremely unwell about him and this whole arc in general

The base version of this song is just as good, but something about the piano version gets the vibes just right for these scenes... Something about the waltz-style cheeriness of the vocals contrasting to how horrific the lyrics and situation actually are. Idk man i'm fine don't look at me

#dbhc #dbhc tango #tangotek #hermitcraft #hermitcraft dbh au #hermitcraft s8 finale #moon big #hermitcraft season 8 #hc season 8 #hermitcraft s8 #tango #art escapades #HRAGHARHGHARGH i promise i dont have a million drawings for every song <said yknow like a liar #tw death #tw vast #tw blood #tw technogore #lemme know if i missed any content warnings!#i'm literally so not okay about him. and this snowballed okay.#fun composition turned into “oh let me do some studies so i know what i'm drawing” turned into dramatically lit pieces with full lighting #yes the red is purposeful. dont look at me #my last crazy person rambling thought:#i like that it's unclear if the concept of being 'alive' is 'wrong' is because he's dying #or if it's because he never considered himself alive in a human sense in the first place #i just think. an android who's build for thermo regulation and resisting heat and explosions.#dying to an explosion that split his already-broken shell. making it wayyy too cold #is the most ironic freaking way to slowly loose power. trying to regulate the heat in his body because space is so cold and hes not #built for that.#dbhc music #dbhc art

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sunrequiem · 1 year

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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…

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#abolition #chronic illness #class warfare #community care #disability #disease #healthcare #justice #long covid #mecfs #mental health #millions missing #pandemic #public health

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