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Reposted by Claus Ernst

Danielle Beckman @daniellebeckman.bsky.social · 2h

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

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Reposted by Claus Ernst

George Monbiot @georgemonbiot.bsky.social · 11h

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...

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

www.theguardian.com

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Reposted by Claus Ernst

valebodi.bsky.social @valebodi.bsky.social · 4h

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

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

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Reposted by Claus Ernst

Paracetamolfee @paracetamolfee.bsky.social · 6h

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

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Reposted by Claus Ernst

Kelly @broadwaybabyto.bsky.social · 8h

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!

Megaholt 𓅃 @megaholt.medsky.social · 8h

That’s…not good.

pubmed.ncbi.nlm.nih.gov/40813533/

SARS-CoV-2 infection heightens the risk of developing HPV-related carcinoma in situ and cancer - PubMed

SARS-CoV-2 infection is associated with elevated risks of HPV-related carcinoma in situ and cancer, irrespective of age or race. The findings underscore the importance of understanding the interplay b...

pubmed.ncbi.nlm.nih.gov

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Reposted by Claus Ernst

Conor Browne @brownecfm.bsky.social · 7h

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.

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Claus Ernst @clausernst.bsky.social · 7h

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.

Reposted by Claus Ernst

#9 Dream @gayfabfourfan.bsky.social · 13h

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

Denis - The COVID Info Guy @thecovidinfoguy.bsky.social · 16h

People under 25 collapsing at concerts isn’t a mystery — it’s COVID and Long COVID. Both can trigger POTS and other post-viral issues, but too many still ignore that reality.

Source: x.com/AgathasSapph...

Screenshot of a tweet by Fin replying to Sam Parker.

Sam’s tweet reads: “not to be so millennial but why is everyone under 25 about to collapse and die of thirst at concerts now.”

Fin responds: “it’s Covid it’s fucking Long Covid which causes POTS and a plethora of other issues. y’all need to stop asking these questions if you’re gonna ignore the answer.”

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Reposted by Claus Ernst

Michael Stingl @neurostingl.bsky.social · 10h

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

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

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Sheep in Fog @brebis.bsky.social · 11h

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

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).

www.europesays.com

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Reposted by Claus Ernst

Petit Feu @petitfeu.bsky.social · 21h

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.

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.

magazin.aekb.de

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Verena Hackl @verhac.bsky.social · 22h

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

Barbara Kaufmann @barbarakaufmann.bsky.social · 1d

Jede Person, die sich auch nur ansatzweise mit der Situation & mit dem Alltag von Menschen mit ME/CFS in Ö auseinandergesetzt hat, weiß, dass das gelinde gesagt Unsinn ist. Es gibt keine Versorgung. Die Familien/Partner:innen schultern das allein. Und werden allein gelassen.. orf.at/stories/3407...

Sozialministerium sieht ME/CFS-Versorgung gesichert

orf.at

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Reposted by Claus Ernst

Michael Stingl @neurostingl.bsky.social · 1d

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...

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...

www.sn.at

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Reposted by Claus Ernst

Dr. Sabine Hermisson 🦋 @sabinehermisson.bsky.social · 1d

Neuer Tiefpunkt:
offene Lüge.

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

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

Sozialministerium sieht ME/CFS-Versorgung gesichert

orf.at

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MissingDOCTORSandPSYCHOTHERAPISTS @medocspsytheras.bsky.social · 1d

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...

PAIS CARE Fortbildungen: Charité – Universitätsmedizin Berlin

pcn.charite.de

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Reposted by Claus Ernst

Verena Hackl @verhac.bsky.social · 1d

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...

Sozialministerium sieht ME/CFS-Versorgung gesichert

orf.at

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BCISLEMAN @bcisleman.bsky.social · 1d

“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...

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

www.nytimes.com

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Reposted by Claus Ernst

Leif Erik Sander 🇪🇺🇺🇦 @sanderlab.bsky.social · 1d

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

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.

www.zeit.de

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Claus Ernst @clausernst.bsky.social · 2d

'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.'

🔥🔥🔥

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Claus Ernst @clausernst.bsky.social · 2d

'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.' >

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Claus Ernst @clausernst.bsky.social · 2d

'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?'

Julia Doubleday @juliadoubleday.bsky.social · 2d

Nobody has Long COVID, but everybody has brain fog, cognitive decline and memory loss. I talk about the overwhelming scientific evidence that COVID damages the brain, and the overwhelming social unwillingness to acknowledge it in my latest:

www.thegauntlet.news/p/when-will-...

When Will the Lion Concern Himself

Joking memes make light of the uncomfortable reality: everyone's got a little of that post-COVID brain damage these days

www.thegauntlet.news

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Reposted by Claus Ernst

Tom Kindlon @tomkindlon.bsky.social · 3d

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/

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

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Tania J. Spencer @taniaspencer.bsky.social · 3d

"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...

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

www.context.news

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Esther @elhopkins.bsky.social · 3d

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

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#9 Dream @gayfabfourfan.bsky.social · 4d

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

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

www.nature.com

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