Discover and read the best of Twitter Threads about #millionsmissing

Most recents (24)

1/ I absolutely cannot convey the importance of the #LongCOVID community & the #pwME community working together to advance the science & understanding of both of these conditions. The faster that happens, the faster we can advance treatment options of both and alleviate suffering
2/ In this moment, there is tremendous power in these communities to advocate for care.

There is a hard won *decades long* wisdom from the #pwME community that #LongCOVID patients will only benefit from.

This data has been underfunded and understudied for just as long.
3/ The clinicians who research and specialize in these patients are FEW, probably less than 20 in the entire country.

#LongCOVID further compounds the problem of there simply not being enough clinicians to take care of all the people suffering.
Read 20 tweets
#LongCovid: 4 or 5 patients cured with #bc007. Drug neutralizes the GPCR-autoantibodies that are formed after Covid infection(also others) or much more rare after vaccination.
fau.eu/2021/08/27/new…

Video

Further explanation in the pictures(ALT) Patient with mild #LongCovi...First treated and "cur...This study compared matchin...Large variety of emerging a...
Presentation of the findings in #LongCovid #LongCovidKids patients from @UniFAU and @Dr_B_Hohberger and #bc007 treatment success.
Need emergency approval,fast

Link of GPCR to rheumatic diseases(linked to auto-ab?)
pubmed.ncbi.nlm.nih.gov/28855694/
Non-GPCR-auto-ab
nature.com/articles/s4158…
1 of the treated patient relapsed with #LongCovid after 3 months of free symptoms(only reached 95% of pre-Covid pwrformance). It is unknown if new infection(large wave in 11/2021), remaining auto-ab lingered(not enough #bc007,multitreatment necessary?) or if aab come back in time
Read 14 tweets
1/ According to latest ONS figures, 2M people in the UK now have Long Covid. Between 50-70% meet diagnostic criteria for #MyalgicEncephalomyelitis, a serious condition notoriously neglected & misunderstood by medical professionals.

Medics, read on for important information 🧵
2/ Thank you @AnilvanderZee for making this video. I want medics watching to understand that although Anil looks in good health, I can assure he is not. The exertion used to make this video will have triggered a ‘crash’
3/ I have experienced this for myself. Prior to covid I was a fit and healthy 35yr old, no comorbidities, regularly working 12hr+ shifts all day on my feet.
Read 26 tweets
"We moeten infectieziekten dus niet apart zien. Het lijkt of alles in elkaar past, postinfectieuze klachten na een virusinfectie of bacteriële infectie, en met deze review vallen veel puzzelstukjes op zijn plaats. In de geneeskunde is hier op dit

c-support.nu/paralellen-tus…
moment een gebrek aan begrip voor. Er is dus meer gericht onderzoek nodig.

Voor zowel #Qkoorts als voor #longCOVID is door VWS een instituut opgestart in de vorm van Q-support en C-support om patiënten met postinfectieuze klachten na hun infectie bij te staan. Meer biomedisch
onderzoek is nodig en Q-en C-support zien het dan ook als hun taak om hierop aan te dringen. Daarom wordt er een denktank samengesteld om gezamenlijk met nationale en internationale onderzoekers aan VWS concrete aanbevelingen te doen voor verder onderzoek.'

#millionsmissing
Read 3 tweets
🚨Attention medics.🚨 An important thread on #MyalgicEncephalomyelitis Forget what you think you know. It is not psychosomatic. These pts are desperately physically unwell, likely with a chronic infection. #MedTwitter #MedEd #TeamGP 🧵 1/
Bedbound & housebound, they make up #millionsmissing. They maybe out of sight, but they are never far from my mind.

Neglect of #ME is the biggest medical scandal of the 21st century. The medical community will soon look back on their treatment of #pwME with horror & shame./2
But some Drs maybe forgiven for their ignorance. #ME fails to feature on the UK medical curriculum and as such, awareness & understanding is low.

The condition has also been highly stigmatised & erroneously - but deliberately - labelled psychological./3
Read 22 tweets
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
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

1/
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 🚴🏄‍♂️ 🥁

2/
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

3/
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

#LongCovid

1/6

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

2/6
@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

3/6

nature.com/articles/d4158…
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
(1/6)
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.

1/

#MEawarenessHour
#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
2/
#MEawarenessHour
the basis for those guidelines.
(See: zorginstituutnederland.nl/actueel/nieuws…)

3/
#MEawarenessHour
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

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