Discover and read the best of Twitter Threads about #MillionsMissing

Most recents (24)

SARS-2 is not mild, I must say
It's not mild, no, not today!
It's not mild for a child, big or small
It's not mild, it affects them all! A vibrant whimsical waterco...
It's not mild for pilots in the sky
It's not mild, oh me, oh my!
It's not mild for teachers in the school
It's not mild, it's not cool A whimsical watercolor of a...
It's not mild for parents at home
It's not mild, wherever you roam
It's not mild for doctors, so wise
It's not mild, it takes them by surprise a whimsical watercolor of a...
Read 6 tweets
Top 16 reasons you think you don't know many people w/ #LongCovid:

1. You don't know many people well enough to know their illnesses.

2. LC is mostly invisible.

3. People haven't connected the dots b/w their current illness & their covid infection.

4. People haven't noticed yet that their health and/or functioning is worse.

5. People have been gaslit (by family, friends, physicians, etc.) into believing that their symptoms are not LC.

6. Social stigma & disbelief discourage disclosure.

7. People believe LC myths ("you can't get LC if you're young & healthy," "you can't get LC if you've been vaccinated," "LC symptoms are just ageing or anxiety," "if your Dr. won't diagnose it then it's not LC," "covid symptoms only last 2 weeks," etc.).

Read 8 tweets
NEW for @PsychToday: A march on Washington of those too sick to leave to leave bed.

I report on Friday's #MillionsMissing event in DC. As officials declare end to pandemic, #longcovid & #mecfs patient groups set up 300 empty beds on National Mall.
With red blankets topped with white pillows, the beds seemed reminiscent of the women with red cloaks and white bonnets in The Handmaid’s Tale, a metaphor that for chronic illness sufferers might be fitting given their own movement building solidarity amid gaslighting.
16 million Americans are believed to have #longcovid.

"Every one of those numbers has a name, and every name is at the core of a story of profound loss,” said @exceedhergrasp1 during a press conference at the foot of the Washington Monument.
Read 8 tweets
Mein altes Leben + was ich vermisse:
Ich war 17 und Schülerin, habe mich auf die Matura vorbereitet und danach ein freiwilliges soziales Jahr in Frankreich geplant.
Ich habe Cello gespielt, hatte viele Freud:innen und ein gutes Leben.
1/ ein Paar Schuhe mit einem Z...Text des Threads auf einer ...
Heute vermisse ich alles, was ein Leben überhaupt ausmacht: v.a. meine Selbstständigkeit sogar in den grundlegendsten Dingen wie Essen und Waschen.
Ich vermisse die Sonne, die Jahreszeiten, Musik und vor allem die Kontakte zu anderen Menschen, meine Freund:innen und Familie.
Mein Leben mit #MECFS + was ich mir wünsche:
Ich habe kein Leben.
Ich liege seit 2 1/2 Jahren im Bett in einem dunklen Raum, mit Ohrstöpseln und Augenbinde von allem abgeschirmt.
Ich kann nur noch durch Fingerzeichen sprechen und bin total abhängig von meinen Pflegepersonen.
Read 4 tweets
I didn't realize what the #MillionsMissing tag meant when I'd first come across it. I didn't know I was one of the millions missing. Missing from every family vacation, every christmas dinner, every concert my favorite artist has in my area.
I don't even know if my extended family asks about me when they never see me at various family gatherings anymore. They've gotten used to me not being there. I've missed every xmas, easter, birthday, anniversary, every holiday my entire family had gathered for in the last 2 years
I've gone on summer trip with my parents almost every single year for the first 28 years of my life. It was my favorite thing, I'd been looking forward to it all year. They still go every year. Without me. And I cry about it, a lot. I just want to go again, just once #longcovid
Read 3 tweets
Today (well, yesterday now) is #MEAwarenessDay. I've been one of the #MillionsMissing since age 16. I turned 23 last week.

There are so many things I could say about life with #SevereME, so many alarming statistics & horrifying, heartbreaking stories. (1/8) Image
But I don't have the physical or cognitive capacity to. So if there's just one thing you take away from this thread, whoever you are, please know:

We were and are people. We had lives, and often still have big hopes & dreams despite being mostly or completely bedbound. (2/8)
Most of us cannot tolerate basic sensory input so we must live in darkness, silence, isolation. Many are unable to speak and/or communicate due to neurological effects. Some cannot tolerate a comforting hug, a gentle touch – and this disease happens to children too. (3/8)
Read 8 tweets
Hi, I'm Emily! I used to be a documentary filmmaker, teacher, environmental activist, artist, adventurer, wife, friend. Now I spend 22 hours a day in bed, too sick to interact w/ the world, too sick to watch films, much less make them.
1/ Selfie of me and my husband...Me filming with a camera an...Me standing on top of a mou...Selfie of me and my husband...
Over the past 3 years of the pandemic, millions more have joined me in this abyss of illness. We’ve been swept under the rug by the government, doctors, & society. We need research funding, financial support, treatments, a cure. We need our lives back.
2/ Me sitting cross legged in ...MEAction infographic about ...
Thank you to @MEActNet & @itsbodypolitic for putting together this stunning protest on the National Mall today to help make the millions of us who have disappeared from our lives visible.
3/ Graphic art showing rows of...Photo from @caseygd43 of ro...
Read 7 tweets
You'd never guess - from the name - what Chronic Fatigue Syndrome 𝘳𝘦𝘢𝘭𝘭𝘺 is.
A lot of doctors don't know either.
According to current research, #MyalgicEncephalomyelitis (ME/CFS), otherwise known as "Chronic Fatigue Syndrome," is a neuro-immune condition with fluctuating physical and cognitive symptoms. The gloved hands of a scien...
Some people get ME/CFS after a virus, but in others it develops gradually without a known trigger.
The symptoms can range from mild to severe, it’s often highly disabling, and it is not rare. The exact causal mechanisms haven't been nailed down yet, but research is getting closer
Read 12 tweets
I always knew there were diseases we had no cure for, but developing #LongCovid opened my eyes to a world of suffering I had no idea existed. I didn’t know what #MECFS was, and with this name, I could have never imagined such suffering.

#MECFS in its very severe form is probably one of the most debilitating diseases in the world. It is particularly cruel because it considerably limits energy and “punishes” those who step out of their energy limits by worsening symptoms, sometimes permanently
Doctors and researchers who care, have compared it to late stage AIDS or kidney failure, in which the patients barely exist and typically die after ~ one month. However, patients w/ very severe #MECFS live permanently like this, and the disease has been coined “the living death”
Read 8 tweets
I really rec folks who are not chronically ill read through the #MEAwarenessDay and #MillionsMissing hashtag to read the stories of those w/ ME/CFS, LC & other postviral illnesses.

So much of chronic illness is invisibilized & it's crucial we help make the "invisible" visible.
Especially in the midst of an ongoing mass disabling event, so many nondisabled people either don't know about ME/CFS & Long COVID or don't believe it can happen to them.

The truth is, postviral illness can happen to anyone.
Folks with ME/CFS & other postviral illnesses desperately need treatment. The more of us who care & advocate, the quicker and better chances they have of getting treatment that could drastically change their lives for the better.

Many have been suffering for yrs, if not decades.
Read 3 tweets
(1/8) If someone had told a few years ago that I will suffer from an illness called "chronic fatigue syndrome", I would never have estimated its severity. I might have thought of people getting tired a little faster.
What do you think of when you hear "fatigue"?
(2/8) The feeling after a long day at work or after exercising, right? #ME(CFS) couldn't be further away from this feeling. The first time you heard "CFS", did you think of a serious illness like end-stage cancer or AIDS? Probably not.
(3/8) However, the level of suffering is similar for the most severely affected people with "#MECFS".
People know the feeling of #fatigue & therefore falsely draw the conclusion of being able to suspect what the illness feels like.
Read 8 tweets
2023 #MEAwarenessDay

A 🧵 of people with #MyalgicEncephalomyelitis for DECADES

Lives on pause
QoL drastically changed
Whether mild/moderate/severe/very severe ME
We have all been affected

No treatment
No cure
Is this FAIR?

#RingFenced funding needed for #BiomedicalResearch ImageImage
Read 8 tweets
Begleitend zum #MECFSAwarenessDay machen heute verschiedene Aktionen auf #MECFS aufmerksam: u. a. das Symposium an der @ChariteBerlin, die #LiegendDemo vor dem Bundestag und #LightUpTheNigth4ME.

Hier im Thread & auf unserer HP findet ihr einen Überblick.… Schriftzug: “ME/CFS-Tag: Ak...
@ChariteBerlin Heute ab 14:30 Uhr findet das ME/CFS-Symposium des Charité Fatigue Centrums mit @Karl_Lauterbach als Schirmherr statt. Sebastian Musch aus dem DG MECFS-Vorstand hält um 17:15 Uhr einen Vortrag zur Rolle der Patientenorganisationen in der #MECFS-Forschung.…
@ChariteBerlin @Karl_Lauterbach Von 15:30 – 18:30 Uhr findet die #LiegendDemo (@LiegendM), veranstaltet durch den neu gegründeten Verein @ME_Hilfe, unterstützt von @dg_mecfs und @MMissingGermany, vor dem Deutschen Bundestag statt.
Read 10 tweets
The government's public health crisis may be officially ending, but for millions of people with ME/ Long Covid, we are #StillSickStillFighting.
#MillionsMissing 2023 is May 12th at the Washington Monument featuring an art installation & press conference. Graphic of the Washington M...
ME/CFS is a neurological disease with symptoms in all body systems that affects people of all ages and backgrounds. Most cases of ME/CFS are triggered by infection, often a viral infection. Before the pandemic, there were millions of people in the US living with ME/CFS.
Now, half of the Long COVID community meets the diagnostic criteria for ME/CFS. This more than quadrupled the number of people living with ME/CFS in the US.

#MECFS #LongCovid Over a red background featu...
Read 5 tweets
#MillionsMissing 2023 is tomorrow! It will be a powerful day–where this community comes together to share their stories, demand that we receive the treatment and care we deserve, and garner the much-needed press attention. Reminders of how to prepare in this thread. Graphic for #MillionsMissin...
We are heading to the Washington Monument in DC with an art installation and press conference! This art installation will highlight the #MillionsMissing from their lives due to ME and Long COVID and draw attention to our community’s demands.

Ways you can join in 🔻
1. Watch/Share the Press Conference It will be livestreamed TOMORROW at 11am PT/2pm ET on our YouTube channel, Facebook, Twitter, and on our site. (should all tech work as planned!)

2. Activism From Home Toolkit and Pre-made Graphics :
Read 6 tweets
#MEAction is hosting a demonstration at the Washington Monument on May 12th! Join us there in person or show your support from home! Together, we will make our voices heard so we can command the attention of the government and the press. Find out more at
The art installation will be at Washington Monument (northeast side) from 9 am to 3:30 pm ET.

The press conference will be held at 2 pm ET in DC & also livestreamed via our social media & on our page. (Press question, Email )…
We have an Activism from Home Toolkit for everyone joining in the critical effort of making sure our #MillionsMissing stories & effort are shared far & wide. #pwME #pwLC

#MyalgicEncephalomyelitis #LongCovid #MECFS
Read 4 tweets
Avec le #CovidLong & l'#EncephalomyeliteMyalgique j'ai appris que je ne peux plus rien prévoir à l'avance.
Cette maladie est imprévisible, sournoise, fluctuante, et réduit considérablement les liens sociaux. Imageje ne peux plus rien prévoi...
With #longcovid & #MyalgicEncephalomyelitis I've learned that I can't plan anything in advance.
This disease is unpredictable, sneaky, fluctuating, and greatly reduces social connections. With #CovidLong & #MyalgicE...Image
Read 4 tweets
#EM : quand faire 1 peu trop [pour nous] peut [nous] aggraver beaucoup 🪫
C'est ce que vivent chaque jour des malades trop souvent invisibles, touchés par l'#Encéphalomyélitemyalgique, maladie multi-systémique qui peut prendre plusieurs formes et avoir des sévérités variées,
les malades les plus touchés restant cloîtrés dans la pénombre de leur chambre et dépendants d'aidants.
Le symptôme cardinal de l'EM, nécessaire pour que soit posé le diagnostic (en attendant l'arrivée de tests basés sur des bio-marqueurs auxquels travaillent, entre autres,
les rares équipes de recherche mobilisées sur le sujet) est le #MPE, pour #MalaisePostEffort.
🔹 Comme son nom ne l'indique pas trop, c'est une réponse disproportionnée et anormale du corps suite à un effort physique, cognitif ou émotionnel. La notion même d'effort ne permet
Read 7 tweets
#EM : quand faire 1 peu trop [pour nous] peut [nous] aggraver beaucoup 🪫
C'est ce que vivent chaque jour des malades trop souvent invisibles, touchés par l'#EM - encéphalomyélite myalgique, maladie multi-systémique qui peut prendre plusieurs formes et avoir des sévérités
1/ Encéphalomyélite myalgique ...
variées, les malades les plus sévères restant cloîtrés dans la pénombre de leur chambre et dépendants d'aidants.
2 témoignages précieux ont été partagé ces derniers jours sur Twitter, en anglais :
1️⃣ d'un aidant @cam_ccl :…
2️⃣ d'un médecin @PutrinoLab :…
Du 9 au 12 mai, nous allons communiquer sur cette maladie, loin d'être rare a fortiori depuis qu'une partie des #covidlong viennent grossir les rangs des #paEM.
1000 mercis d'ailleurs à l'équipe @MillionsMissgFr pour la
Read 4 tweets
What I mean is that they saw me before. They saw me sick. They saw me moderate, mild, severe. They heard and witness the dozens of symptoms accumulating for years. They saw it. I didn't know what was happening to me. I checked SO MANY OF the mecfs symptoms for YEARS.
doctors even diagnose me orthostatomic hypotension, orthostatic intolerance, then pots. the raynauds, like a lot of these conditions. But they did nothing about it. "It will disappear" Guess what ? It got worse. i even had a test for an illness that causes red blood cells to not
be able to transport the oxygen through the body. like they all saw that something was wrong but it was "nothing"

Of course they kept blaming the fact that I was sick and getting worse on me. "I wasn't doing enough" while I was overworking and probably in crashes all the time.
Read 7 tweets
My doctor dismissed me, my wordsw my symptoms, for 10 years (20 if you take the rest) then didn't see me for a few years.
Fast forward i'm very severe ME almost dying. He came because i've been almost dying for months. After YEARS.

He did ask me why he hadn't see me these past
few years.
Well I became housebound then completely bedridden, bedbound, because they didn't listen to me.

This was such an insult.

When I gave him (again) the list of symptoms I've been having and complaining about for 10 years, the reply was so insulting.
I was 100% bedridden. For weeks, months. At this point. In the dark. No energy. Difficulty breathing and speaking. Out of breath. Hurting like hell. Lost a lot of weight. Dehydrated.

He SIGHED. At my list of symptoms. Said that this was "a lot" like I was exagerating, inventing,
Read 7 tweets
The Long Covid Revolution'

'Millions of American adults are impaired by long Covid. They have a vision for what our society owes to chronically ill and disabled people'…
"The night before, President Biden had announced that “the pandemic is over.” The protesters knew that this wasn’t true. Long Covid, they argued, is a national emergency."
"#MillionsMissing demonstrations like this one began in 2016 to raise awareness about myalgic encephalomyelitis, an infection-associated complex chronic illness (often abbreviated as ME/CFS). The hashtag alludes to the millions of dollars missing from research into ME/CFS and
Read 5 tweets
Geil mein Termin fällt aus weil HÄ im Urlaub ist & das fällt denen 2 Stunden vorher ein⁉️ Ganze Nacht nicht geschlafen für nix. Boah bin ich sauer. Da kann man ja wohl mal früher Bescheid sagen. Ich hab den Termin explizit bei ihr gemacht.

#NieWiederUnsichtbar #MECFS
Ich hab tausend Sachen zu klären & jetzt geht gar nix.

Und fragt die ernsthaft, ob ich für Blutabnahme & EKG dann trotzdem vorbeikommen will 🤡 Ihr wisst die Antwort...

Als ob ich für so ein scheiß extra mit KTW (!) da hinfahren würde 🙄

Und jetzt wollen die mir keine #Physio Verordnung schicken, weil HÄ unterschreiben muss. Lächerlich, noch andere Ärzte in der Praxis. Ich hatte seit 3 Wochen keine Behandlung. Es wäre der letzte Termin vorm Umzug. Soll ich jetzt nach 8 Jahren gehen ohne mich zu verabschieden?
Read 8 tweets

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