Claus Ernst

(S+) Tochter mit ME/CFS: »Unsere Tochter verträgt kein Licht. Wir pflegen sie deshalb in Dunkelheit« Sie kann nicht sprechen, erträgt keine Geräusche, keine Menschen – Milena, 22, hat ME/CFS. Ihre Eltern Sabine und Joachim Hermisson kümmern sich seit fünf Jahren um sie. Hier berichten sie, worauf es ...

„Wir haben lange nach einem Hausarzt gesucht. Viele an ME/CFS Erkrankte haben keinerlei medizinische Betreuung.“

Im Interview mit @sabinehermisson.bsky.social & ihrem Mann über schwerstes #MECFS & Pflegeroutinen bei ihrer Tochter Mila.

#FlächendeckendeKatastrophe

www.spiegel.de/gesundheit/d...

Canadian Collaborative Conference on ME

List of speakers on the first day.

Join us at the Canadian Collaborative Conference on #ME, 100% free and online!
Register here: icancme.ca/research/202...
#MyalgicEncephalomyelitis #MECFS #LongCovid

Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome Research could offer hope for ME patients – but some experts urge caution and say more studies needed

ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...

Infographics on the lag between developing ME/CFS and being diagnosed in several countries: ME/CFS patients typically wait many years from onset before receiving a diagnosis Average (mean) time from onset to diagnosis for surveyed ME/CFS patients Ireland UK Australia Norway 5.2 15.2 CrunchME Italy Finland Czech Republic Canada France USA Belgium Serbia Switzerland Germany Austria The Netherlands Iceland Spain Sweden Denmark Croatia 5.9 5.9 6.1 6.2 6.5 6.6 • 6.7 6.8 1 6.9 7.0 7.1 7.1 By country averages range from ~ 5 - 12 years 8.2 8.2 8.4 8.5 8.6 • 9.3 • 11.8 12.0 0.0 2.0 4.0 6.0 8.0 10.0 Average (Mean) Years from Onset to Diagnosis Data Source: European ME Alliance Survey 2024 (Figure 12, p. 35), n = 8,981 Note: these averages are for all respondents, regardless of date or age of onset

This wecrunchME visual shows how people w/ #ME/CFS typically wait many years from onset to receiving a diagnosis. Avarages range from 5- 12 years.

To correct this we need better medical education (especially of #PEM), and readily availably clinical biomarkers

@europeanmealliance.bsky.social

Es ist SO EKELHAFT, was man sich heutzutage alles bieten lassen muss.

Verzweifelter Versuch einen Arzttermin auszumachen:

MFA 1) keine Kinder
MFA 2) kein ME/CFS
MFA 3) sOlChE KiNdEr MüsSeN StAtIoNäR
MFA 4) Sollen die selbst machen die eins brauchen

/1

We’ve known for years that many viruses are oncogenic in nature… there’s ample evidence to suggest Covid is as well.

Yet another reason to wear a good quality mask like an N95, get boosted, clean the air and keep fighting for paid time off & better mitigations!

1. I've had a surprising number of conversations about Covid-19 over the past week or so, all sparked by the fact that I was, as always, wearing an FFP2 respirator. People in healthcare facilities, taxi drivers, people on trains and buses.

It may be or may not be that BP is similar to HC. But pulse most definitely isn't, considering many LC patient get POTS.

“y’all need to stop asking these questions if you’re gonna ignore the answer.” #COVID

Hund aus dem "This is fine"-Meme, sitzt gemütlich in einem brennenden Raum und sagt "This is flächendeckend"

Auf in einen neuen Tag der flächendeckenden Versorgung von #MECFS!

Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome | ME / Chronic fatigue syndrome - EUROPE SAYS Scientists say they have developed the world’s first blood test to diagnose myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS).

Scientists say they have developed the world’s first blood test to diagnose myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS).

Blood test = less medical gaslighting

Mein Thema: In Extremsituationen da sein Im Format „Mein Thema“ berichten Berliner Ärztinnen und Ärzte, was sie beschäftigt. Darüber haben wir mit Dr. med. Elisa Stein gesprochen.

Was beschäftigt Berliner Ärztinnen und Ärzte in ihrem Lebens- und Arbeitsalltag? Dr. med. Elisa Stein hat bereits in vielen Krisengebieten gearbeitet – und trägt jetzt dazu bei, dass in Deutschland Menschen mit schwer behandelbaren Krankheiten wie Post-COVID und ME/CFS nicht übersehen werden.

Wie schaffen es minderjährige Kinder, die ihre schwer an #MECFS erkrankten Elternteile pflegen, nicht den Glauben an die Gesellschaft, eine funktionierende Gemeinschaft zu verlieren, angesichts solcher Meldungen?

Ernstgemeinte Frage (das ist kein hypothetischer Fall).

@schumannkorinna.bsky.social

ME/CFS-Patienten sehen Notlage, Politik sichere Versorgung Das Sozialministerium sieht die Versorgung von Patienten mit postakuten Infektionssyndromen wie Long/Post Covid oder ME/CFS als "flächendeckend gesichert" an. Das geht aus einer Beantwortung einer par...

Ich krieg die flächendeckende "Versorgung" von #MECFS täglich mit - und sei es nur durch die Anzahl der Terminanfragen, die meine Kapazität schon lange sprengen.

Wer sind die beschwichtigenden Blockierer, die behaupten, dass das eh so passt?

www.sn.at/panorama/oes...

Sozialministerium sieht ME/CFS-Versorgung gesichert

Neuer Tiefpunkt:
offene Lüge.

@schumannkorinna.bsky.social @andibabler.at
@spoe.at

#Politikversagen #MECFS
orf.at/stories/3407...

Save the date, #medibubble!

Mittwoch, 22.10.2025, 16:30-18.00 Uhr

Die Versorgung Schwerstkranker mit PAIS ME/CFS

Fortbildung mit PD Dr. Christiana Franke innerhalb des #PostCovid-Netzwerkes pcn.charite.de/pais_fortbil... der Charité Berlin

Anmeldelink: eveeno.com/paiscare_okt...

Sozialministerium sieht ME/CFS-Versorgung gesichert

Entweder ich verstehe die Bedeutung von „Versorgung“ oder „flächendeckend sichergestellt“ nicht.

Wie kann man zu diesem Schluss kommen?

#MECFS

@schumannkorinna.bsky.social

orf.at/stories/3407...

Long Covid Risk for Children Doubles After a Second Infection, Study Finds

“Your body really has a memory system and is really going to be hurt from recurrent infection.”

Long Covid Risk for Children Doubles After a Second Infection, Study Finds www.nytimes.com/2025/09/30/h...

Nobelpreis für Medizin: Wenn Ihr Immunsystem nicht Amok läuft, liegt es an diesen Zellen Kämpfen, aber nicht gegen sich selbst: Wie dem Immunsystem das gelingt, haben die Medizinnobelpreisträger gezeigt. Es könnte helfen, Krebs und Neurodermitis zu behandeln.

Nobelpreise für Medizin 2025 geht an Shimon Sakaguchi, Mary Brunkow & Fred Ramsdell für ihre bahnbrechenden Arbeiten zur peripheren Immuntoleranz. Gratulation 👏
#Tregs #Tolerance #FoxP3 #Nobel2025
Super Erklärstück dazu von @florianschumann.bsky.social @jasimmank.bsky.social @zeitonline.bsky.social

'But nobody can get a virus that is objectively bad for you, objectively harmful, that we know invades the brain, degrades the immune system, and attacks the blood vessels, dozens and dozens of times, and just “be fine”. That is not how human bodies work.'

🔥🔥🔥

'But I don’t trust anecdote, I trust science. And science says that with each infection, risk is cumulative. Risk to the heart is going up. Risk to the brain is going up. People may react to the virus is different ways, at different rates.' >

'Is it really such a mystery that teachers are complaining that “COVID babies” can’t say their names or tie their shoes coming into kindergarten? We’ve been serially infecting children with a virus that damages their brains. We know it does this. And we just…. keep doing it?'

DYSAUTONOMIA COMORBIDITIES Dysautonomia often coexists with other conditions, including: ME/CFS Long COVID Autoimmune conditions e.g. coeliac disease, lupus Mast cell activation syndrome (MCAS) Small fibre neuropathy (SFN) Ehlers-Danlos syndromes (EDS) e.g. hypermobile EDS (hEDS) Gastrointestinal disorders e.g. irritable bowel syndrome (IBS), gastroparesis Migraine disorders Sleep disorders INFORM. INFLUENCE. INVEST. and much more... RESEARCH UK SCO36942

From ME Research UK:

#Dysautonomia tinyurl.com/mry8bkty can often co-exist with other conditions such as mast cell activation syndrome, Ehlers-Danlos syndromes, and small fibre neuropathy. Several are also considered to be ME/CFS comorbidities, so we will explore further during October.

#MEcfs

1/

Long COVID costs countries billions of dollars | Context by TRF An estimated 400 million people have suffered long COVID since the start of the pandemic

"The #OECD, a club of mostly rich nations, estimates #LongCOVID could be costing its 38 members $864 billion to $1.04 trillion annually due to reductions in quality of life & labour force participation.

⚠️ This does not include the extra burden on #HealthServices":

www.context.news/socioeconomi...

I have spent five years campaigning for clinically vulnerable and long covid but I am very upset to see some campaigners attacking people talking about other health conditions. I have had to block a lot of people over this. Two things can coexist. There are those at high risk of severe outcomes and

COVID-19 infection associated with increased risk of new-onset vascular dementia in adults ≥50 years - npj Dementia npj Dementia - COVID-19 infection associated with increased risk of new-onset vascular dementia in adults ≥50 years

Can’t emphasize enough that new studies like this come out ALL THE TIME but are usually ignored by basically everyone, including the media & the medical establishment. It’s bananas. #COVID

Beim Neurologie Kongress Mitte November in #Berlin ist es wieder nötig, Flyer über #MEcfs zu verteilen.

Kurze Schichten,
nur in den Pausen.

Wir brauchen dringend noch Unterstützung.

Wäre toll, wenn sich Gesunde solidarisch zeigen würden ❤️

Gerne repost

In einem 2019 neu herausgegebenen deutschen Neurologie-Buch wird ME/CFS unter der falschen Bezeichnung "chronisches Erschöpfungssyndrom" thematisiert. Es wird dort in einem Kapitel namens "Befindlichkeits- und Verhaltensstörungen von unklarem Krankheitswert" abgehandelt, oder besser: abgekanzelt. 🧵

Dear Bridget Phillipson, Please Can We Talk About Health? Dear Bridget Phillipson, Please can we talk about health? It’s autumn 2025. We’re one month into the school year, in England. Two of my children are ill, again.With Covid, again.It&#821…

Brilliant article by a teacher highlighting the current dire situation for teachers and kids every winter when it comes to infection risk and spread. We continue to fight for our kids to have the right to breathe clean air.

stevebheadteacher.wordpress.com/2025/09/30/d...

Long COVID is here to stay—even in children Post-acute sequelae of SARS-CoV-2 infection (PASC, also known as long COVID) are complex, multisystem, long-lasting complications of SARS-CoV-2 infection that profoundly impact the daily life of those...

Mir kommt auf Bluesky das Thema #LongCovid bei Kindern und Jugendlichen oft etwas zu kurz. Mit einer Reinfektion verdoppelt sich das LongCovid-Risiko bei Kindern:
www.thelancet.com/journals/lan...