Discover and read the best of Twitter Threads about #MillionsMissing

Most recents (24)

Es sind #NichtNurEinzelne!

W, Anfang 30, sportlich, aktiv. Covid vor einem Jahr. Danach immer schlechter zurecht. Zunehmende Halbseitensymptomatik, Schwäche des Arms und des Beins. Neurologische Vorstellung. Diagnose CIDP - chronisch informatorisch demyelisierende
Polyradikuloneuropathie. Eine Entzündung der Nervenwurzeln. War in der Reha, bei verschiedenen Fachärzten, in Kliniken. Bisher nicht über Pacing aufgeklärt worden, bisher keine medikamentösen Behandlungsversuche des #LongCovid bzw #mecfs, was sie sicher jetzt hat.
Diese junge Frau ist aus ihrem Leben gerissen worden. Sie kann nicht mehr die Mutter sein, die sie sein möchte. Sie kann nicht die Ehefrau sein, die sie sein möchte. Sie kann gar nicht mehr die sein, die sie sein möchte.

Es sind #millionsmissing und es braucht mehr Aufklärung!
Read 4 tweets
Many with #longCovid are finding it difficult to describe what they are feeling. Those of us in the #MECFS and #ChronicLymeDisease #EDS community have had longer to think about and put these experiences into words…
Post-viral illness wreaks havoc on multiple systems within your body which of course are interconnected. The way I describe it is that you are losing your body’s life force — this is different from your soul. And it’s not just energy. It’s your actual life’s force.
In the beginning when you first get sick, you can still feel the healthy parts of you versus the sick parts — kind of like layers of an onion.

But eventually the sick parts seep into the healthy parts and you can no longer distinguish between the two.
Read 18 tweets
My desperate cry for help. Twitter, please do your thing🤍

Dear @elonmusk (1/6) Image
Dear @elonmusk (2/6) Image
Dear @elonmusk (3/6) Image
Read 8 tweets
Hoy es #12Mayo, se celebran muchas cosas. Entre ellas el día de las enfermeras, pero también es el dia de la #EncefalomielitisMialgica, una enfermedad absolutamente abandonada por el sistema, más incluso que la #fibromialgia, al ser hasta más discapacitante.
Nosotras, las afectadas por la #EMsfc, no celebramos nada.

La #EncefalomielitisMialgica es una enfermedad que afecta principalmente a sistema nervioso, inmune y endocrino, 3 sistemas cuya interconexión solo está comenzando a investigarse, y que es mucho más relevante en mujeres+
Es por eso que esta enfermedad, al igual que muchas otras enfermedades emergentes, afecta mayoritariamente a mujeres y sufre por ello sesgo de género.
Otra coincidencia es el factor ambiental en la mayoría de estas enfermedades emergentes, pero eso lo dejaremos para otro momento+
Read 72 tweets
2 yrs ago, to raise awareness for the #MillionsMissing due to #MECFS, I started a 🧵 on how tragic chronic illness has consumed my life

But I was too sick to finish, & shortly after uninstalled Twitter. Trapped by illness, unable to advocate.

2 surgeries later... 🧵, 🎬 2

2017: I was Prof of #Epidemiology @PublicHealthUGA, researching #HIVprevention and #vaccine prep for emerging epidemics. I directed an epi training program @ICI3D. I loved my work & my amazing colleagues!

I was healthy & active 🚴🏄‍♂️ 🥁

Then, I bought a 🏡 and had it renovated. Jan 2018 I moved to the newly built master bedroom addition, I became sick.

⏩ 2 years to 2020. Water burst thru walls on 2 sides of my bed. Revealing walls, subfloor, crawl space filled with mold due to construction defects

Read 22 tweets
Ok. Another request, another 🧵. Today, we address the strained relationship between psychology, psychiatry and #LongCovid. Much of this may also apply to #pwME and other infection-associated chronic illnesses (h/t again @microbeminded2) and other “invisible” illnesses (1/n)
Psychology and psychiatry have a complex history with syndromic illnesses. Why? When illnesses are diagnosed on the basis of symptoms rather than “objective” tests, some clinicians will doubt the reality of the condition. Let’s start by psychoanalyzing them, shall we? (2/n)
This behavior is not justifiable, scientific or ethical. But it is also is not new: in the 1800s, tuberculosis was regarded by most physicians as the “disease of the sensitive” before tubercule bacillum was discovered, the “cancer personality” was touted for decades (3/n)
Read 22 tweets
Minister Donnelly, with respect, this research is not "invaluable". It is not yet peer-reviewed. It is not yet published. It does not seem to be pre-registered. The findings on the face of things do not even demonstrate proof-of-concept



There are many salient methodological shortcomings: (a) non-random selection of participants; (b) unclear diagnosis; (c) small sample; and (e) NO CONTROL GROUP; etc etc.

These pts had 'persistent symptoms' at best, far from the #LongCovid that affects so many


@ahandvanish This was a conference presentation, not a journal article. Its media appearance represents 'science-by-press-conference'. We should await peer-reviewed publication of final results.

Some 75% of "preprint" #COVID studies never go on to be published

Read 6 tweets
Trigger warning for #LongCovid #medicaltrauma
A thread of 6 tweets. This is the first time I’ve spoken publicly about my #LongCovid Image
If COVID is the war, then #longhaulers are our veterans and we must take care of them!
-@dianaberrent, founder #SurvivorCorps
(2/6)I was diagnosed with Long COVID in April of 2021 and due to my significant cognitive impairments and treatment resistant depression, I became unable to work.
Read 7 tweets
(1/15) PEM explained
When I woke up the day after jogging, I felt terrible, although terrible is probably an understatement. It is a feeling that healthy people can hardly imagine. It feels like having a flu, a hangover and a jetlag at the same time.
(2/15) At that time I wasn’t able to make the connection between yesterday's jogging and the terrible feeling the next morning.
Today I know that I experienced my first PEM back then.
(3/15) What is PEM?
PEM stands for Post External Malaise and refers to the worsening of symptoms after minor physical and/or mental exertion.

PEM occurs immediately after a performed activity or with a latency of approx. 12 to 48 hours thereafter and may persist for several
Read 15 tweets
🧵1/9 Psychologist
"We think your symptoms are psychological." I couldn't get this sentence out of my head. How could my symptoms be psychological? Bulls**.

But what if he was right? I couldn't get rid of the thought & followed the doctors advice & went to see a psychologist.
2/9 It was an old man, around 75. After I have told him about everything, he asked me what bothered me. "My symptoms" I said. “But there has to be something that burdens you mentally” he answered. The following conversation went something like this:
3/9 "Did you have a bad experience in your childhood?"
- "No"
Did you lose a close family member?"
- "No"
Are your parents divorced?
- “No”
He was desperately trying to find something in my past and I was getting more and more confused.
Read 9 tweets
Not such good news for #pwME in the Netherlands?

Dutch patients should no longer expect that future Dutch guidance for #MEcfs will be based on the new NICE guideline.


#MyalgicE #MEcfs #MillionsMissing
In December 2020, the Dutch Care Institute (Zorginstituut Nederland) had announced it would work towards a new "quality standard"/guideline for care for people with #MEcfs. In that announcement it stated that the British NICE guidelines could possibly serve as
the basis for those guidelines.

Read 10 tweets
What is ME/CFS?
In short, in its severe stage, it is the worst non-fatal physical disease you can have.

ME/CFS is a severe, physical and complex disease, usually caused by a viral infection. Because so little research has been done on it, scientists are not sure about the
underlying cause yet.
An incorrect response of the immune system to an infection is likely which then, as in a chain reaction, leads to a dysregulation of the immune system, the nervous system, the endocrine system, the energy metabolic system and the cardiovascular system.
The disturbed immune regulation also leads to a sustained T-cell activation and a reduced function of natural killer cells.

Who is prone to develop ME/CFS is also still unclear. There are probably two factors:
-An infection at the time of high physical activity or stress load
Read 9 tweets
On the top picture, you see me.  
Back then I enjoyed life and did not worry about the future. I had just finished school and couldn't wait to see what life had in store for me. I was a very sociable person and loved having people around me. I lived a very active life and there Image
was hardly any party I missed. Photography and travelling were my great passions. 
On the picture below, you see M.E.  
A severe and utterly frightening disease that hardly any research has been done on. This disease is to blame for the fact that I have lost everything about my
old life. Here I am getting another infusion because I am in such a bad general condition again. 
So, what happened between the two pictures? 
I developed Myalgic Encephalomyelitis / ”Chronic Fatigue Syndrome” after a mild virus infection. (hard to pronounce, even harder to
Read 8 tweets
Liebe Freunde!

Ein Aufruf und ein paar Updates zur #MECFS / #LongCovid Dokumentation.

Wir würden dringend Eltern von Betroffenen Kindern, oder Familien wo die Eltern betroffen sind /1

#NieWiederUnsichtbar #Schattenfamilien #ChronischKrankAT #MillionsMissing #ChronischKrankDE
für unseren Film suchen, da wir glauben, daß es absolut wichtig ist, auch diese Seite zu zeigen. Da wir voraussichtlich die Produktion auf Deutschland auswerten werden, können sich natürlich auch Betroffene aus unserem Nachbarland gerne melden.

Es wäre auch ganz toll, wenn /2
sich auch noch generell jüngere Betroffene (18-30) melden würden. Jede Stimme zählt und hat Gewicht.

Kontakt via DM oder office @ fullframefilms .org Betreff: ME/LC Doc

Vielen herzlichen Dank 🙏🙏🙏

Nun noch ein paar Neuigkeiten zum Film: /3
Read 11 tweets
14 mths Long Covid RHR 110 bpm ^ to 147 bpm *just* on standing. Still experiencing hypnagogic auditory hallucinations. There is an ongoing pathological process; it’s not rehabilitation patients need. #TreatLongCovid #pwLC #pwME #MedTwitter #MedEd #TeamGP
For anyone who thinks I’m exaggerating. Postural Orthostatic Tachycardia Syndrome (POTS) everybody:
Medics, if you haven’t heard of POTS pls educate yourselves. Many patients with Long Covid have a high resting HR (for the majority this is due to dysautomnia; a faulty autonomic nervous system, *not* anxiety). Some will also have POTs (i.e. ^ tachycardia on standing), as shown
Read 18 tweets
Great question; thanks for asking. The main reason people with medically unexplained physical symptoms (MUPS) are resistant to psychological therapy is because, they have been victims of relentless medical gaslighting./1 🧵
In absence of obvious biomarker & return of normal test results, patients with MUPS are often incorrectly ascribed a psychological diagnosis. Psychologisation of MUPS has become commonplace, and it is not acceptable. It is important to consider:/2
(A) The absence of obvious biomarker does not mean one does not exist. Simply, it has not yet been identified./3
Read 14 tweets
AD: #LongCovid #MECFS #PostCovid

Ich hatte heute zwei Interviews mit Betroffenen, die mich sehr bewegt haben. Erst kürzlich wurde ich mir der Tragweite dieses Themas so richtig bewußt. Weltweit sind 17 Millionen Menschen davon /1

#LC #pwME #LebenmitLongCovid #millionsmissing
betroffen, Tendenz steigend. Treffen die Prognosen zu, wird es auch immer mehr Kinder betreffen.
Da unsere laufenden Projekte momentan etwas problematisch sind, habe ich mich heute definitiv dazu entschlossen, das Thema in einer Dokumentation aufzugreifen. /2
Die ersten Vorgespräche und Interviews wurden bereits geführt, und es ist mir gelungen eine zweite Produktionsfirma mit an Bord zu holen.

Aus diesem Grunde suchen wir nun Menschen, die dazu bereit wären, Ihre Geschichten mit uns zu teilen. Da es so viele Menschen, /3
Read 6 tweets
1/7 Why I care about #MECFS : My husband had the illness since 2012 when he was infected with the Epstein-Barr virus and had glandular fever. He searched 3 years for a diagnosis. Went to every doctor there is: physicians, neurologists, internists, hematologists, even oncologists.
2/7 Everyone told him "Your blood and body is fine, it must be psychological." Only through sheer luck, a hematologist knew a professor at the university of Heidelberg, who then told him about #MECFS. But german doctors and authorities won't acknowledge the sickness.
3/7 He cannot work as a chemical technician at @merck_de anymore, because it is in shifts and physically too challenging for him. He was put in many different positions at the company, but none would fit, because his new managers couldn't cope with him.#MillionsMissing
Read 7 tweets
1/ Zur heutigen #meawarenesshour möchte ich zur Abwechslung mal was Schönes mit euch teilen (zumindest AUCH schön). Image
2/ Ich bin früher gern gereist, gern gewandert. Ja, klar schwingt da auch Wehmut mit, weil mir das heute nicht mehr möglich ist - vielleicht nie mehr sein wird - aber ich bin froh, dass ich das alles dank sehr schleichendem Verlauf noch erleben durfte. Image
3/ Leider ist einer der Peaks, zu dem besonders viele Menschen an #mecfs erkranken das Kinder-/Jugendalter. Diese Kinder können all das nicht mehr tun und werden so etwas nie erleben können, wenn nicht endlich ein Umdenken stattfindet und die Forschung zu #mecfs forciert wird. Image
Read 4 tweets
1/ Diese Woche mag ich zur #meawarenesshour nicht mehr so viele Worte machen. Aber ich möchte euch etwas zeigen. Image
2/ All das sind Bilder von Tätigkeiten oder Orten, die ich geliebt habe. Image
3/ Nichts davon werde ich wieder tun können, Image
Read 7 tweets
In light of that bloody article, let me walk you through what is not extreme fatigue...

This morning my ex came to get the children up for school as he now does daily because I can't do that and also do anything else at all in a day...

When I say "anything else" I am not referring to a job, or a social life, I mean ANYthing.

If I had to drive the morning school run I wouldn't also be able to get dressed. I wouldn't be able to take a bath for those 5 days, I wouldn't manage any lunch or dinner.


Even then, I don't think I would last the full 5 day school week.

So what the fuck am I calling the morning routine then? Do we have a farm to run or something?

I'm talking about a normal get up, teeth, uniform, breakfast, shoes, sign permission slip, car kinda morning.

Read 21 tweets
We’ve raised over $22,000/£16,000 for our End of Year Giving Campaign! Thank you! 🧵

Time to reveal Staff Characters!
Adriane: The Press Scribe
Ben: The Huntsman of Agencies
Erin: The Valkyrie of Programs & Campaigns
Holly: The Town Crier of Social Media
Jaime: The Wizard of Research & Medical Education
Julia: The Mystical Fairy of Fundraising
Laurie: The Manager-ing Elf
Steven: The Court Jester of Communications

We have reached our 2nd fundraising level, but we must keep driving forward #MEAction’s End of Year Giving Adventure!
The Giving Adventure is a fun way to raise funds, but it also provides us an opportunity to connect as a community--which is at the heart of everything we do at #MEAction! So join in & share a tweet and/or picture about what your fantasy character would be AND tag @MEActNet.
Read 5 tweets
Here is a thread breaking down that statement by "medical leaders" on the new NICE guideline for #MECFS

TL;DR It's pretty weak...

"Medical leaders" have "signed" (although not using their names(!)), but have their members been balloted? No.


They agree that it is "important that all patients with this condition are given access to the best possible services and treatments available." Whoopy do. Nobody disagrees, *especially* not NICE

#MECFS #MillionsMissing

Read 12 tweets

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