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#Millionsmissing Reel by @crazycatboy13 - Also concerned for the future world bc queer people are statistically much more likely to get ME/CFS, what if Covid makes most of us very ill before e
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@crazycatboy13
Also concerned for the future world bc queer people are statistically much more likely to get ME/CFS, what if Covid makes most of us very ill before everyone realizes. And this correlation comes from both queerness and ME/CFS having a high comorbidity rate with ADHD/ASD and connective tissue disorders - CTDs make you more likely to develop ME/CFS. And the Bateman Horne Center is a good place to start for researching ME/CFS! They have lots of YouTube videos as well. It’s also important to know that PEM (Post Exertional Malaise) is only caused by ME/CFS despite people saying otherwise - if you think you have PEM, seek an evaluation/diagnosis for ME/CFS. VD: Neilan is wearing a dark green hoodie and is in his room. Transcript: “*go on to be diagnosed with ME/CFS (they already have it)” (shown at 10sec) “COVID hasn’t gone anywhere!! They just stopped reporting on it. Wear a mask” (shown at 30sec) #disabled #chronicillness #chronicfatigue #pots #mecfs #cfs #myalgicencephalomyelitis #chronicallyill #dysautonomia #potssyndrome #callitME #millionsmissing #longcovid #longcovidawareness #mecfsawareness
#Millionsmissing Reel by @itsaliceella (verified account) - I don't understand these TIKTOK trends but I've had this song in my head for weeks now & couldn't resist 😂😂 🤷🏻‍♀️ ⁣ ⁣ #butterflyinthesky #relatabl
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@itsaliceella
I don’t understand these TIKTOK trends but I’ve had this song in my head for weeks now & couldn’t resist 😂😂 🤷🏻‍♀️ ⁣ ⁣ #butterflyinthesky #relatablecontent #chronicillnesshumor #chronicallyfabulous #sickchick #sickaf #chronicbadass #babewithamobilityaid #chronicallyawesome #invisibleillnessawareness #healthmemes #symptoms #spoonielife #chroniclife #sicklife #disabledlife #mecfsawareness #myalgicencephalomyelitis #pwme #millionsmissing #invisibleillnesswarrior #chronicpainwarrior #chronicfatiguesyndrome #chronicwarrior #chronicillnesslife #chronicillnesscommunity #spooniecommunity #spooniesisterhood #spooniesisters
#Millionsmissing Reel by @franhaddock_ - I'm sorry, everyone's probably bored of this sound by now But when I thought about a time I would or would not change in my life it was this one and
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@franhaddock_
I’m sorry, everyone’s probably bored of this sound by now But when I thought about a time I would or would not change in my life it was this one and it’s not positive unfortunately. Obviously I mostly talk now about having severe ME, but I had ME for nearly 5 years before I became severe. When I first developed symptoms in 2018, there were many months where I pushed through, continuing trying to exercise and go to work every day when I was far too sick. I have barely any photos of the bad times in those early years as obviously I didn’t know I’d go on to document my illness. Every time I felt the tiniest bit of remission I would push through again, and I feel fairly certain that I could’ve potentially recovered or drastically improved if I hadn’t done this and had instead listened to my body and rested. I also do realise this wasn’t my fault. And it isn’t yours either if the same happened to you. There is a huge issue with late diagnosis for ME patients and medical professionals giving harmful advice or no advice. We should be working towards early diagnosis and immediate advice to stop, rest and pace. And ways to make this actually possible for people, especially those with less resources and stability. I also blame the pushes of capitalism to never allow anyone to slow down and stop until it’s too late. So this is a message to everyone struggling with new symptoms of fatigue or post exertional malaise, a.k.a. worsening of symptoms after exertion - do not push through if it’s at all possible for you. Stop. rest. and pace #myalgicencephalomyelitis #ChronicIllness #MECFS #MillionsMissing #StopRestPace [Video description: the video is a montage of photos of Fran, a white woman with brown hair from 2018/19. In the first photos she is looking active and working as a vet. In the second half of photos, she is look tired and unwell. There is text over the photos. Mash up of the songs piano man and silver springs plays in the background]
#Millionsmissing Reel by @notjustfatigue - Have you heard of symptomsplaining? It's the everyday dismissal and second-guessing of chronic illness symptoms-by doctors, employers, loved ones, and
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@notjustfatigue
Have you heard of symptomsplaining? It’s the everyday dismissal and second-guessing of chronic illness symptoms—by doctors, employers, loved ones, and society at large. Many people with chronic illness experience this, including people with ME/CFS. #chronicillness #chronicillnesswarrior #chronicillnesslife #chronicillnesscommunity #chronicillnessawareness #chronicillnesssupport #mecfs #notjustfatigue #pwme #longcovid #myalgice #millionsmissing #myalgicencephalomyelitis #symptomsplaining
#Millionsmissing Reel by @jenniejacques1 (verified account) - ME before ME with @emzfitofficial @rosemac01 looking back to perk me up! #tbt What's ME? It's a nuero-immuno-metabolic disease 🦠 affecting millions
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@jenniejacques1
ME before ME with @emzfitofficial @rosemac01 looking back to perk me up! #tbt What’s ME? It’s a nuero-immuno-metabolic disease 🦠 affecting millions worldwide; millions more off the back of Covid19. 2018 I got sick. I never got better. Like #millionsmissing with the same. As science advances, we are getting more answers! It used to be psychologised which drastically hindered biomedical research 🙄 Although interestingly we were never allowed to give blood 👁️ Anyway, diagnostic blood tests are (finally!) in development 😃 💥 About time! “WE CAN SEE ME IN THE BLOOD 🩸 “ - psychologise that motherfckers 😂 Infections have been wreaking havoc for decades! Not everyone can trace their ME back to infection, but most can. 💙🦋 I was hospitalised with the severe acute EBV & hepatitis in 2019 complicated by a chronic UTI PLUS pesky kidney stones; more than “pesky” - in hospital I pissed one out (fun!)🩸BUT compared to ME, I call them pesky 😂 6 years later I live my life as a shadow of former self with ME/CFS. Occasionally mobilising with a stick & using a wheelchair ♿️ if I’m going to dare to go out far! I am functioning without aid in my home & garden 💪 where I can lay down flat when needed. ❤️For the first few years I was mostly bed-bound so this is never taken for granted❤️ I’m happy 😃 & LUCKY to be improving! I love my life despite limitations. I have an incredible partner, 2 homes 🍀 2 beautiful dogs 🐶 🐶 Fortunate is an understatement. With ANY improved health, I will make sure the world 🌎 helps #pwme There is a 7 fold increase in suicide with this illness - not behavioural/directly related to mental health - it’s just a savage illness to “live” with, described as a “living death” & inflammation highly likely associated too. It feels like my body shuts down. On a cellular level. Even mild exertion can too often be paid for. PEM (post exertional milaise) is what we call it when we “crash.” “Exertion” can be brushing teeth or turning in bed 🛌 or taking a phonecall 😞 - severe & very severe ME can lose the ability to drink or eat. I am still riddled with chronic infections 🤢 & will be writing soon about my journey with #chronicuti
#Millionsmissing Reel by @itsaliceella (verified account) - With this years M.E. Awareness Month coming to an end, I wanted to make a little vid talking about whatever you guys wanted me to, and PEM was by far
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@itsaliceella
With this years M.E. Awareness Month coming to an end, I wanted to make a little vid talking about whatever you guys wanted me to, and PEM was by far the most requested topic. It’s hard to fit it all into a couple of minutes, and it really is hard to describe. But I’ll just add a few more notes here. I guess one thing I would add to this would be how hard it can hit you and how out of the blue it can be. And how SOMETIMES you can do the same thing, or use the same (ish) amount of energy doing something and one day it not be that bad and another time you can be in bed for weeks. It’s so unpredictable, it’s almost impossible to make plans let alone keep them. And what’s so hard to explain is how you can be able to do something - let’s take a little walk as an example - but it’s so hard to know wether to go for the walk or not- some days that little minute walk can make you feel a bit better, it’s great to have been outside etc, and some days that walk can absolutely shatter you and you wish you’d never done it and now you’re worse than before you did it!!! The not knowing is bladdy awful and again, you might see us do that little walk, but not the resting or dying afterwards 😅 Anything I’ve missed do add in the comments 🩵 And a huge thank you to @florallaurauk for the forget me nots 🌸 I loved sticking them to my face 🥰😂 Tee @loungeunderwear 🩵 Mascara, eyeliner & brow wand @guidebeautycosmetics Gifted 🩵 Primer @rimmellondon 🩵 Foundation @maxfactor 🩵 Bronzer / contour @sleekmakeup 🩵 Eyeshadow, Brushes, Lip pencil & Lip gloss @beautybaycom Gifted 🩵 Concealer @oxygenetix Gifted from @kendrickpr_uk 🩵 Setting powder @no7uk 🩵 Lash glue & Brow balm @lashbase_uk 🩵 [Video Description in comments] 🩵 #PostExertionalMalaise #millionsmissing #longhaulers #postviral #myalgice #pwme #millionsmissing2024 #canyouseemenow #mecfs #myalgicencephalomyelitis #invisibleillnessawareness #butyoudontlooksick #youdontlooksick #invisibleillness #invisibleillnessawareness #spoonie #spooniewarrior #cfswarrior #chronicillness #spooniesisters #chronicillnesswarrior #chronicillnessawareness #meawareness #pwme #meawarenessmonth #cfsme #longcovid #forgetmenots #flowersmakeup
#Millionsmissing Reel by @medpage (verified account) - Patients with #longCOVID or #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (ME/CFS) participated in the #MissingMillions protest in front of the
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@medpage
Patients with #longCOVID or #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (ME/CFS) participated in the #MissingMillions protest in front of the #WhiteHouse on Monday, asking the federal government for more money and more attention to those conditions. The protesters expressed frustration that President Biden declared the #pandemic over the night before while being interviewed on @60Minutes. “We are here today because this #pandemic is not over,” said @lauriemichellejones, executive director of @meactnet. “We made the choice to come out here because lives depend on us showing up,” said @terri_wilder. Asked why ME and long COVID patients were joining forces, @lisaplrc of @patientled noted that “about half of people with long COVID meet the diagnostic criteria for ME. Long COVID is ME in a lot of cases.” Protesters are calling for: - the government to declare long COVID and ME a national emergency - education for medical providers - economic support - more research on long COVID and ME at the NIH Read more at the link in our bio and follow us for updates. #MEAction #MillionsMissing #pwME #longCOVIDawareness #longCOVIDsymptoms #protest #patientadvocacy #healthjustice #healthpolicy #patientadvocate #longCOVIDsupport #patientsupport
#Millionsmissing Reel by @dina.babajic (verified account) - Millions missing! #millionsmissing #mecfs #myalgischeenzephalomyelitis #schaunichtweg
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@dina.babajic
Millions missing! #millionsmissing #mecfs #myalgischeenzephalomyelitis #schaunichtweg
#Millionsmissing Reel by @jenniejacques1 (verified account) - @wesstreeting @ashleydaltonmp I am LUCKY 🍀 to get some "good days" but even my better days are a long way from full health…. #fundtheplan #thereform
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@jenniejacques1
@wesstreeting @ashleydaltonmp I am LUCKY 🍀 to get some “good days” but even my better days are a long way from full health…. #fundtheplan #thereforme There are #millionsmissimg and millions more to come off the back of #LongCovid 💙🦋 #ThereForME #meawareness #millionsmissing #longcovidawareness #ebv #infectiousdisease #lymedisease #pots #eds #severeme #mecfs #chronicillness #disability #dysautonomia #chronicuti #chronicpelvicpain #chronicpain
#Millionsmissing Reel by @itsaliceella (verified account) - How many times has a doctor told you all your results were within the 'normal' limits when your body is screaming 'I'M NOT OK' 😅😂 … I'll go first… 2
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@itsaliceella
How many times has a doctor told you all your results were within the ‘normal’ limits when your body is screaming ‘I’M NOT OK’ 😅😂 … I’ll go first… 237,889, you? 😂 Also what has a doctor or health professional ever said to you that’s been super awkward / patronising / dismissive / gas lighting etc as I’m def gonna make more of these and who knows, I may make your experience into a reel! (With consent ofcourse) 😂🙌🏻🤷🏻‍♀️⁣ ⁣ ⁣⁣ #chronicillnesshumor #chronicallyfabulous #sickchick #sickaf #chronicbadass #babewithamobilityaid #chronicallyawesome #invisibleillnessawareness #healthmemes #symptoms #spoonielife #chroniclife #sicklife #disabledlife #mecfsawareness #myalgicencephalomyelitis #pwme #millionsmissing #invisibleillnesswarrior #chronicpainwarrior #chronicfatiguesyndrome #chronicwarrior #chronicillnesslife #chronicillnesscommunity #spooniecommunity #spooniesisterhood #spooniesisters
#Millionsmissing Reel by @tabataamaralsp (verified account) - Maio é o mês de conscientização sobre a Encefalomielite Miálgica, ou Síndrome da Fadiga Crônica - uma condição grave e debilitante que afeta milhões d
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@tabataamaralsp
Maio é o mês de conscientização sobre a Encefalomielite Miálgica, ou Síndrome da Fadiga Crônica — uma condição grave e debilitante que afeta milhões de pessoas no mundo, muitas delas vivendo invisibilizadas, sem diagnóstico e sem acesso ao cuidado que merecem. Neste ano, o Brasil participou pela primeira vez do movimento global #MillionsMissing, com o ato #VidasInvisíveis. Cada par de sapatos representou um paciente que, por causa da doença, não consegue sair da cama — mas que tem uma história, sonhos e uma luta legítima por reconhecimento e cuidado. 💛
#Millionsmissing Reel by @dunjakreiser (verified account) - Und los: ich beiße in die Zitrone. 🍋 Warum? Etwa 250 000 Menschen kämpfen in Deutschland gegen ME/ das Chronische Fatigue Syndrom. Darunter 40.000 Ki
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@dunjakreiser
Und los: ich beiße in die Zitrone. 🍋 Warum? Etwa 250 000 Menschen kämpfen in Deutschland gegen ME/ das Chronische Fatigue Syndrom. Darunter 40.000 Kinder. ➡️Mit der LemonChallenge mache ich die Krankheit hier sichtbar, denn diese schwere neurologische neuroimmunologische Multisystemerkrankung ist nur wenigen bekannt, oft unverstanden und noch nicht ausreichend erforscht. Jede und jeden kann es treffen. Betroffene leiden neben einer schweren Fatigue, also körperlicher Schwäche, die das Aktivitätsniveau erheblich einschränkt. Viele haben starke Schmerzen. Ein Viertel aller Patientinnen und Patienten kann das Haus nicht mehr verlassen, viele sind bettlägerig und auf Pflege angewiesen, schätzungsweise über 60 Prozent sind arbeitsunfähig, können nicht zur Schule gehen und nicht am normalen Leben teilnehmen. So sauer der Geschmack der der Zitronen ist, so bitter ist der Alltag der Betroffenen. Oft dauert es Jahre bis zur Diagnose, viele werden lange nicht ernstgenommen. Hier findet ihr mehr Informationen: www.mecfs.de Gerne unterstütze ich die Forderung nach mehr Forschung und besseren Behandlungsmöglichkeiten. Ich danke @michaelthews für die Nominierung und gebe die Challenge weiter an @rebecca.schamber.spd und @saschawolff_ . Und, wer traut sich noch in die Zitrone zu beißen? Machen wir gemeinsam ME/CFS sichtbar! #LemonChallengeMECFS #LemonChallenge #FürMehrForschung #MillionsMissing #mecfs #UnsichtbareKrankheit #lebenmitfatigue @lemmon_challenge

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