News from Germany

National Clinical Trial Group (NKSG) Post-COVID Syndrome and ME/CFS - Phase 2 (Scheibenbogen's group) - this is independent of the national decade.

Funding amount: EUR 8m

In its first funding phase since 2022, the National Cancer Study Group (NKSG) was established as a platform for clinical trials and translational research with the aim of developing therapies for PCS and ME/CFS.

Three randomized controlled trials (RCTs) and two phase II trials were initiated to address key pathomechanisms in defined patient subgroups. These studies investigated the removal of autoantibodies through

- immunoadsorption,
- the efficacy of blood flow-enhancing drugs,
- and hyperbaric oxygen therapy

The results to date from the National Cancer Study Group (NKSG) indicate that autoantibodies and inflammation are central pathogenetic factors in PCS and ME/CFS.

Therefore, the second phase will focus on drugs that enable sustained improvement through the temporary depletion of autoantibody-producing cells, as well as on an immunomodulatory and neuromodulatory approach with high therapeutic potential.

These drug trials will again be accompanied by a comprehensive biomarker analysis to identify and validate predictive markers for treatment response and concomitant diagnostics.

www.gesundheitsforschung-bmftr.de

Nationale klinische Studiengruppe (NKSG) Post-COVID-Syndrom und ME/CFS - Phase 2 - DLR Gesundheitsforschung

www.gesundheitsforschung-bmftr.de www.gesundheitsforschung-bmftr.de

---

The German obsession with autoantibodies (and inflammation) continues. But perhaps the money will also go towards the Isatuximab trial.
 
Development of AI-assisted diagnostic software for the evaluation of clinical typologies of ME/CFS patients (DETECT-ME/CFS)

The DETECT-ME/CFS project aims to enable rapid and reliable diagnosis of ME/CFS in specialized facilities with limited resources and a high workload.

This project develops an innovative Clinical Decision Support System ( CDSS ) that enhances clinical expertise and decision - making processes using artificial intelligence. Diagnostic accuracy and efficiency will be improved in two ways: First , by analyzing anonymized patient data, artificial intelligence will be used to identify patterns and novel diagnostic features, enabling the reliable exclusion of differential diagnoses. Second, based on automated literature searches for ME/CFS and the differential diagnoses identified, a system will be created to improve overall diagnostic capabilities using machine learning. The CDSS will be tested in real-world clinical practice and incorporates automated learning mechanisms for continuous improvement.
 
www.aerzteblatt.de

Kritik an zu hohen Prävalenzangaben zu Long COVID in vielen Studien – Deutsches Ärzteblatt

www.aerzteblatt.de www.aerzteblatt.de

AI Summary:
An expert group from the Robert Koch Institute (RKI) criticizes that many studies report excessively high prevalence rates for Long COVID. In an overview article published in the Journal of Health Monitoring (2026; DOI: 10.25646/13576), the group states that prevalence estimates vary considerably between studies and are not directly comparable due to substantial methodological heterogeneity.

Differences between studies include variations in data sources, study populations, definitions of Long COVID, follow-up duration, and consideration of potential influencing factors. In addition, most studies lack a control group and focus on nonspecific symptoms that are common in the general population, including in people with other or pre-existing conditions. Therefore, reported symptoms cannot be clearly attributed to a prior SARS-CoV-2 infection.

As a result, previous systematic reviews and meta-analyses have reported very high prevalence rates. For example, one meta-analysis of prospective studies estimated that more than 50% of individuals experienced at least one persistent or new symptom 3 to 6 months after confirmed COVID-19 diagnosis.

According to the RKI team, more reliable estimates come from controlled studies comparing individuals with and without prior SARS-CoV-2 infection. A meta-analysis of controlled studies up to mid-February 2023 estimated a pooled prevalence of at least one reported Long-COVID-associated symptom at least 3 months after confirmed infection at 40.9%. In the control group without evidence of infection, the prevalence was 25.4%, resulting in a prevalence difference of 15.5%. Thus, only 15.5% of reported symptoms in the infected group could be attributed to a prior SARS-CoV-2 infection.

Overall, based on meta-analyses of controlled studies, Long COVID symptoms in adults are estimated to occur in about 10–15% of cases at least 12 weeks after infection. When considering all infected individuals in the population, including asymptomatic or unrecognized infections, the prevalence is likely even lower. The frequency of Long COVID symptoms associated with functional impairments in daily life is estimated to be between 1.2% and 4.8%.

The term “Long COVID” is used inconsistently internationally. The RKI uses it to describe the period beyond the acute phase of SARS-CoV-2 illness and the full spectrum of possible long-term health consequences, focusing mainly on symptoms occurring at least 3 months after infection, often referred to as “Post COVID.”

Common nonspecific symptoms after SARS-CoV-2 infection include severe fatigue and cognitive impairments such as concentration and memory problems, as well as persistent respiratory complaints like shortness of breath and ongoing cough. In some individuals, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) can be identified as a particularly severe subtype associated with substantial limitations in quality of life, physical and mental functioning, and social participation.

The RKI group also notes that long-term health consequences, including ME/CFS, can occur after other viral infections such as influenza, where they are referred to as “post-acute infection syndromes.”
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Long COVID bei Erwachsenen – eine aktuelle Bestandsaufnahme zu gesundheitlichen Langzeitfolgen nach SARS-CoV-2-Infektion in Deutschland

Nübel, Julia Beyer, Ann-Kristin Kümpel, Lisa Eckert, Grit Yessimova, Dinara Heldt, Katharina Mikolajewska, Agata Sarganas, Giselle

Abstract
Hintergrund: SARS-CoV-2-assoziierte gesundheitliche Langzeitfolgen stellen Public Health und Gesundheitsforschung weltweit vor große Herausforderungen.

Methode: Basierend auf einer fortlaufenden Literaturrecherche wurde ein narratives Review (Stand Juni 2025) zu Epidemiologie und Public-Health-Auswirkungen von Long COVID bei Erwachsenen erarbeitet.

Ergebnisse: Anhand von bevölkerungsbezogenen, kontrollierten Studien treten Long-COVID-Symptome mit einer Häufigkeit von etwa 10 – 15 % bei SARS-CoV-2- infizierten Erwachsenen auf.
Neben dem COVID-19-Impfstatus und der Virusvariante wird das Risiko für Long-COVID-Symptome vor allem durch gesundheitliche Vorbelastungen und soziodemografische Faktoren beeinflusst.
Bei den meisten Betroffenen bilden sich die Long-COVID-Symptome innerhalb eines Jahres zurück.
Insbesondere multiple und länger anhaltende Beschwerden können mit erheblichen Einschränkungen von Lebensqualität, Funktionsfähigkeit und Teilhabe sowie einem erhöhten medizinischen Versorgungbedarf einhergehen.
Darüber hinaus mehren sich Hinweise auf einen infektions-assoziierten Anstieg an neu diagnostizierten Symptomkomplexen, Organschäden und chronischen Erkran-kungen, was zur fortwährenden Public-Health-Relevanz von Long COVID beiträgt.

Schlussfolgerungen: Long COVID stellt nicht nur für Betroffene und ihre Angehörigen eine große Belastung dar, sondern geht auch mit nicht einschätzbaren längerfristigen Folgen für die Bevölkerungsgesundheit und das Versorgungssystem einher.

Web | DOI | Robert Koch-Institut
 
diskriminierung-umfrage.de

Die Umfrage zu Diskriminierung in Deutschland. Mach mit.

Drei gute Gründe, bei der großen Umfrage zu Diskriminierung mitzumachen: 1. Deine Stimme hilft, Diskriminierung sichtbar zu machen.
diskriminierung-umfrage.de diskriminierung-umfrage.de
Direct link to the English survey:

Found via this reddit post:
There is a government survey on discrimination in Germany where you can submit any examples of discrimination you have experienced, for example due to disability or chronic illness. ME/CFS is even listed as an example illness.

Perhaps this will give pwME and the way we are treated a little more visibility if a few of us fill it out. With this hope I have submitted my own experience.

For anyone else who wants to submit something, the survey is available in many different languages, but is only available until today.
Click to expand...
 
bnn.de

Long Covid wirft Frau aus Achern komplett aus dem Leben

Beate F. aus Achern war sportlich und aktiv, jetzt bewältigt sie den Alltag kaum. Long Covid hat ihr Leben verändert: körperlich, sozial und emotional.
bnn.de bnn.de

Article about a woman who got ME/CFS soon after retiring.
There’s a short section about her bad experience with a rehab clinic:

She went to a rehabilitation clinic. “There, in turn, they advised me to get more exercise. I went for walks and did some swimming – and it got worse every day. On top of that, I caught COVID again.”​
 

Journalist and pwME Margarete Stokowski wrote a new piece for her Long-Covid column for Apotheken Umschau.

Long-Covid-Kolumne: Das zieht sich aber bei dir​
​
When I bump into acquaintances I rarely see, they often say, “Wow, this is really dragging on for you.”​
And every time I explain that yes, that’s what happens when something is both chronic and incurable.​
It drags on.​
​
In the beginning, I thought it would clear up quickly too.​
Everything started with my Covid‑19 infection in January 2022. The first doctor told me, “Four to six weeks is normal.”​
Her advice was to drink plenty of water and take ibuprofen.​
…​
I’m not a naturally patient person, but you learn to adapt.​
There’s even an English term for it: crip time—a concept that, translated literally into German, unfortunately becomes Krüppelzeit.​
It describes how time works differently for disabled people.​
Tasks that others breeze through can take ages.​
And the reverse happens too: when someone tells me they couldn’t work out for two weeks because of an infection, it feels almost absurdly short.​
My sympathies, truly—but I haven’t been able to exercise for four years and five weeks because of mine.​
Maybe one day I’ll get back to it. Maybe.​
 

RiffReporter

www.riffreporter.de www.riffreporter.de
(Paywall)

New studies using “BC 007” are expected to launch later this year.​
​
After the start-up Berlin Cures failed with its approval trial in 2024, its successor company is now making a new attempt. RiffReporter has exclusive reporting on how the team plans to proceed, what the status is of the long‑anticipated ME/CFS research in Erlangen, and how the patients from the first compassionate‑use treatments with BC 007 are doing.​
 
Chandelier said:

RiffReporter

www.riffreporter.de www.riffreporter.de
(Paywall)

New studies using “BC 007” are expected to launch later this year.​
​
After the start-up Berlin Cures failed with its approval trial in 2024, its successor company is now making a new attempt. RiffReporter has exclusive reporting on how the team plans to proceed, what the status is of the long‑anticipated ME/CFS research in Erlangen, and how the patients from the first compassionate‑use treatments with BC 007 are doing.​
Click to expand...
No way in hell I'm getting my hopes up for this again after last time.
 
Chandelier said:

Journalist and pwME Margarete Stokowski wrote a new piece for her Long-Covid column for Apotheken Umschau.

Long-Covid-Kolumne: Das zieht sich aber bei dir​
​
When I bump into acquaintances I rarely see, they often say, “Wow, this is really dragging on for you.”​
And every time I explain that yes, that’s what happens when something is both chronic and incurable.​
It drags on.​
​
In the beginning, I thought it would clear up quickly too.​
Everything started with my Covid‑19 infection in January 2022. The first doctor told me, “Four to six weeks is normal.”​
Her advice was to drink plenty of water and take ibuprofen.​
…​
I’m not a naturally patient person, but you learn to adapt.​
There’s even an English term for it: crip time—a concept that, translated literally into German, unfortunately becomes Krüppelzeit.​
It describes how time works differently for disabled people.​
Tasks that others breeze through can take ages.​
And the reverse happens too: when someone tells me they couldn’t work out for two weeks because of an infection, it feels almost absurdly short.​
My sympathies, truly—but I haven’t been able to exercise for four years and five weeks because of mine.​
Maybe one day I’ll get back to it. Maybe.​
Click to expand...
There is more wisdom and expertise on this illness in just this excerpted text than every single thing written or said by our biopsychosocial overlords combined, the sum total of all their wasted effort. And it's not even close. Like comparing the size of the Moon to a small piece of yarn.

It's absolutely criminal how those suffering from it know so much more than the people who make all the decisions about us, in secret, behind closed doors. What a cruel thing this ideology is.
 
www.spiegel.de

Endometriose: Zahl der Frauen mit Diagnose stark gestiegen

Laut Barmer-Arztreport hat sich die Zahl der Frauen mit der Diagnose Endometriose binnen 20 Jahren mehr als verdoppelt. Die Daten zeigen, wie stark Begleiterkrankungen ins Gewicht fallen – und was für große regionale Unterschiede es gibt.
www.spiegel.de www.spiegel.de

While not strictly related to ME/CFS, it's relevant because it's a condition that was long unknown or considered psychosomatic and is finally being diagnosed more routinely by doctors.


Sharp Rise in Endometriosis Diagnoses — A Positive Development for Patients​
​
According to the Barmer-Arztreport, the number of women diagnosed with endometriosis has more than doubled over the past 20 years. The data also highlight the significant burden of comorbidities — and reveal marked regional disparities.​

AI Summary:
According to the Barmer-Arztreport, the number of women diagnosed with endometriosis has more than doubled over the past 20 years. Between 2005 and 2024, cases increased from around 230,000 to more than 510,000. The report is based on data from approximately eight million insured individuals and was published in Berlin.

Experts view this rise as positive news because it is mainly due to endometriosis being detected more often and at an earlier stage. Between 2015 and 2024, the average age at first diagnosis decreased by almost four years. In the past, the disease often went undetected, but it has become more widely recognized in society. However, it is still frequently mistaken for normal menstrual pain.

An early diagnosis can also have positive effects on fertility, as earlier detection allows treatment to begin sooner.

Endometriosis is a chronic disease in which tissue similar to the uterine lining grows outside, and sometimes inside, the uterus. The exact causes are still unclear. It is suspected that this tissue responds to menstrual cycle hormones, building up and breaking down outside the uterus and causing bleeding. Possible consequences include bleeding outside the uterus, inflammation, scarring, chronic pain, and reduced fertility.

First-line treatment is hormone therapy, for example with progestins. Studies suggest that long-cycle hormone therapy (without a break for menstrual bleeding) may positively affect later fertility, probably because it delays the spread of the disease.

A revised guideline introduced last year recommends less invasive diagnostic procedures. Instead of laparoscopy with tissue sampling, noninvasive imaging methods such as ultrasound should be preferred.

Between 2005 and 2024, hospitalizations due to endometriosis increased by around 80 percent. Experts hope this number will decline following the new guideline, as laparoscopy will be indicated less often. However, noninvasive diagnostic methods must first become established in everyday practice.

According to the report, women diagnosed with endometriosis also have significantly more comorbidities than expected for their age. Abdominal and pelvic pain were documented more than twice as often. Migraine and musculoskeletal disorders were also diagnosed more frequently. In addition, affected women more often suffered from depressive episodes and anxiety disorders.

There are also major regional differences in diagnosis rates. In Thuringia, first diagnoses are about 20 percent below the national average, while in Saarland they are about 20 percent above average. Endometriosis is also diagnosed more often in densely populated regions than in sparsely populated ones.
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rvallee said:
From comments by German users on bsky, this is a podcast for physicians and this episode features a lot of disinformation about LC and ME/CFS:
Click to expand...

The book in question by the guests of this podcast:

Post-COVID-Syndrom: Grundlagen, Klinik und psychotherapeutische Zugänge
Amazon.de
More than 250,000 people in Germany alone suffer from post-COVID syndrome, and many millions worldwide. The number of ongoing studies is immense, as effective treatment options have so far been lacking. This interdisciplinary edited volume brings together the current state of research on the biological and psychosocial causes of the syndrome, presents diagnostic methods, and explains a range of therapeutic approaches. It describes biomedical as well as psychotherapeutic treatments, exercise therapy, and rehabilitation, including online therapy options. A historical perspective on the phenomenon of exhaustion and an overview of existing care structures round out the book.

About the author and contributors

Prof. Dr. med. Yesim Erim is Professor of Psychosomatic Medicine and Psychotherapy and spokesperson for the Post-COVID Center at the University Hospital Erlangen.

Prof. Dr. med. Volker Köllner is Medical Director and Head of the Department of Psychosomatics at the Seehof Rehabilitation Center of the German Federal Pension Insurance (Deutsche Rentenversicherung Bund) in Teltow, and head of the Research Group for Psychosomatic Rehabilitation at Charité – Universitätsmedizin Berlin.

Contributions by:
Yesim Erim,
Volker Köllner,
Charles Benoy,
Hans-Georg Hofer,
Silke Kastel-Hoffmann,
Judit Kleinschmidt,
Alexa Kupferschmitt,
Eva Morawa,
Eva Peters,
and Henning Schauenburg.
 
I get an impression that the UK will not name Psychosomatic Medicine as a major branch of its academic, research and clinical disciplines. If so, what made Germany ever so upfront and bold?

Pure and applied science, like pure and applied maths and forensics, involves statistics. I am waiting to hear what the statisticians have to say about this psychosomatic interest distinctly vested on a pandemic scale in post-Covid insurance, medicine, and rehabiitation.

I don't think loss adjustment is the proper preserve of a medical Professor, although of course one may trade one's lectures, hawk oneself all over the gaff then come home to roost and crow .
 
bicentennial said:
I get an impression that the UK will not name Psychosomatic Medicine as a major branch of its academic, research and clinical disciplines. If so, what made Germany ever so upfront and bold?
Click to expand...

Make believe medicine always had a more 'establishment' presence in Germany - or at least since the 1980s in my experience. They went on having departments working on bogus physiology in rheumatology long after everyone else had moved over to fairly good science. They were the last people to give up own-language journals with lots of rather weird articles. The emphasis has shifted in the last twenty years - with the USA crashing to the bottom of the science pile and maybe Germany moving more towards a modern scientific medicine, but it would not surprise me if psychosomatic voodoo was still much more kosher there. Germanic medicine is quite extraordinarily hierarchical in a way we largely abandoned in the UK in the 1970s. I have an Australian friend who became an "Uber ChefArts" or something in Basle and seemed to be deified in the process.
 
www.eltern.de

Mama mit Long COVID im Interview: "Ohne meine Familie wäre ich nicht mehr"

Mareike war Lehrerin und begeisterte Sportlerin – bis COVID 19 ihr Leben radikal veränderte. Im Interview erzählt sie, was das für ihr Kind bedeutet.
www.eltern.de www.eltern.de

“Without my family, I wouldn’t be here anymore.”

2,000-word article in Eltern (Parents) that mentions lots of things that are going wrong (exercise recommendations, Munchhausen-by-proxy, etc.)

An application for assisted dying appears to be approved more quickly than the coverage of costs for off-label medications. That should not be the case. Urgent changes are needed at both the political and societal level to give those affected hope. In Germany, many people with ME/CFS take their own lives—including young people. Death must not be the only perspective for people with this illness; there should be more than mere survival—there must be hope for life.​

AI Summary:
Mareike, a former teacher and enthusiastic athlete, developed Long COVID/Post COVID with ME/CFS after a COVID-19 infection at work in 2022. Although the initial infection seemed normal, she continued to experience muscle and joint pain, shortness of breath, dizziness, and severe cognitive problems when she returned to work.

Nearly four years later, she lives with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a severe neuroimmunological illness that can occur after viral infections and causes extreme exhaustion and severe symptom worsening after physical, mental, or emotional exertion. Her symptoms include neck instability, circulation problems in her extremities, constant muscle and joint pain, severe weakness, memory problems, sensitivity to light and noise, and loss of taste and smell. She cannot drive, exercise, or read and write emails easily, and even minor infections can leave her bedridden for a month.

The illness has completely changed her family life. She went from being active and independent to needing care, which her husband now provides. Their child has grown up with the illness and once said they no longer remember what their mother was like when she was healthy. Mareike tries to speak openly about the disease so her child can understand it but does not want the child to feel responsible for caring for her.

Small triggers such as a phone call or a visitor can cause symptom relapses. In severe “crashes,” she cannot get out of bed or take in food or water and may require IV fluids and electrolytes. During these moments she focuses on breathing and uses mindfulness and positive memories to cope.

Her illness also caused serious financial problems. In 2024, the family temporarily had no financial support and lived on half a salary and their savings. Friends helped by bringing food. After a rehabilitation program—which worsened her condition—she was eventually granted a full disability pension.

Mareike says the illness is often misunderstood by doctors and society. Early on, doctors suggested her symptoms were psychological, related to menopause, or that she should exercise. She also encounters people who think chronic fatigue simply means being tired.

Despite the challenges, moments with her family give her strength. She sometimes watches her child dance and imagines dancing with them, and her family has made sacrifices to support her. She also engages politically with other patients, including participating in demonstrations.

She believes the disease is especially cruel for children and teenagers because it isolates them socially and emotionally and currently has no cure or effective treatment. She also describes cases where mothers of sick children are accused of Munchausen by proxy and lose custody because the illness is not believed.

Her main wishes for politics and society are recognition of the disease and more research. She says many patients receive little support from social systems, there are few medical resources, and no approved treatments. With more than half a million affected people in Germany, she believes patients and their families are largely left alone and urgently need better support and hope for the future.
Click to expand...
 
Chandelier said:
www.op-marburg.de

Professor Bernhard Schieffer: „Wir sehen bei jeder Viruserkrankung mehr Intensivpatienten als zuvor“

Der Bund stellt zusätzliche 500 Millionen Euro für die Erforschung postinfektiöser Krankheiten zur Verfügung. Erhält auch das Universitätsklinikum Gießen-Marburg weitere Gelder? Ein Interview mit Klinikdirektor Professor Bernhard Schieffer.
www.op-marburg.de www.op-marburg.de
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www.op-marburg.de

Long-Covid-Forscher: „Wir gehen sehr unbedarft damit um“

Für viele ist Corona ein längst verdrängtes Kapitel. Für manche jedoch wurde das Virus zu einer nicht enden wollenden Tortur. Ein Gespräch mit Professor Bernhard Schieffer über Long Covid.
www.op-marburg.de www.op-marburg.de
(Paywalled)

Another interview with Professor Schieffer.
What do the specific clinical conditions look like?

One is the condition known as POTS (postural tachycardia syndrome), a disorder of the autonomic nervous system in which the heart rate rises abnormally when a person stands up. Those affected often experience dizziness, palpitations, and circulatory problems.

Another frequently described condition is PEM (post-exertional malaise). This refers to a sometimes severe worsening of health after physical or mental exertion—even if the effort was minimal. The symptoms often appear with a delay, and patients may need days or even weeks to recover. In severe cases, Long Covid can lead to ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome). People affected may become partially or permanently bedridden and experience a drastic reduction in their functional capacity.

What happens in the brains of post- and Long-Covid patients?

During a Covid-19 infection, the body may produce antibodies that target not only the virus but also components of the body itself—for example receptors that are also present in the brain. Normally, the blood–brain barrier protects the brain from inflammatory processes. However, during chronic inflammatory reactions this protective barrier can become more permeable. As a result, inflammatory processes may be triggered in the brain, causing neurological symptoms and potentially contributing to the development of neurodegenerative diseases such as multiple sclerosis or Parkinson’s disease.
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Last edited:

"Chronically ill: When life disappears due to ME/CFS | 37 Grad"

Video from the documentary series '37 Grad', from the broadcaster ZDF. Narrated/presented by a friend of someone with severe ME/CFS. Features prominent ME activist Anil van der Zee, as well as accounts from affected family members of pwME at a demonstration in Stuttgart.

Available with English subtitles.

Video description - translated by DeepL - in spoiler:
Tom was always full of energy until he fell ill with ME/CFS. Today, he lives in isolation in darkness. His best friend Jonas shows the struggle for friendship, recognition, and medical help.

Tom and Jonas are best friends and have been through a lot together. Tom is always on the go, constantly riding his skateboard, full of energy. But since a trip they took together three years ago, nothing has been the same. What Jonas initially thought was temporary exhaustion in his best friend turned out to be myalgic encephalomyelitis/chronic fatigue syndrome, also known as ME/CFS. This is a severe chronic systemic disease that often occurs after infections. In Germany alone, around 650,000 people are affected. The tricky thing is that even the slightest physical or mental exertion can lead to a drastic deterioration in the condition, known as a “crash.” Today, Tom lives in isolation with his parents. He spends his days in a darkened room, wears earplugs to block out noise, and is so weak that he has even had to stop speaking at times. Jonas has not seen his best friend since he fell ill. Even a short visit is too much. They only keep in touch through letters and postcards, which Tom often cannot even read himself. Although the disease has been recognized by the WHO for decades, there is a lack of research funding, specialized outpatient clinics, and effective therapies. Many sufferers and their families feel abandoned by the medical community. Jonas is looking for answers: Why is this disease still so unknown despite the high number of cases? How do families cope with the burden of the disease? And what hope is there for those affected?

Mods - please delete if already posted elsewhere.
 
www.faz.net

PEM und Long-Covid: Was Patienten wissen müssen

Anhaltende extreme Erschöpfung ist ein rätselhaftes Symptom nach Infektionen. Der Sportmediziner Christian Puta erklärt, was Kompressionskleidung und vermehrte Salzzufuhr bringen.
www.faz.net www.faz.net
Paywalled.

Martin Rücker interviews sports medicine physician Christian Puta.
Puta's hypotheses have already been discussed a bit here:
Jonathan Edwards said:
In terms of the Puta interview, it starts with this paragraph from Puta:

Because the muscles no longer receive enough oxygen. There is increasing evidence of microclots disrupting blood flow. Even more significant, however, could be damaged red blood cells. In healthy individuals, they are smooth and resemble gummy candies. In patients after a SARS-CoV-2 infection, they are quite frayed. While these blood cells still transport oxygen, the deformation prevents them from reaching all parts of the body. Furthermore, they bind oxygen more readily to themselves and release it to the muscles only minimally, if at all.

This is all make believe as far as I am aware. There is not a shred of evidence for any abnormal access of red cells to muscle in vivo. I have not heard anything about a shift in oxygen binding. The microclots idea never materialised.
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Excerpts from the interview:
What happens in the body during PEM?

Microvascular changes have been documented: the small blood vessels are unable to transport oxygen efficiently to the periphery, for example to the skeletal muscles. In many patients, the red blood cells are deformed: normally, they look like red gummy bears with a smooth surface. In people with PEM, they have many frayed edges, which further impairs oxygen transport. One hypothesis is that this may be damage caused by the spike protein of SARS‑CoV‑2 viruses. It has also been shown that oxygen binds more tightly to hemoglobin, the red blood pigment, and is released less easily. Microcirculation is therefore disrupted, and we also see dysregulation of the mitochondria, the cell’s power plants. Certain metabolic pathways simply stop functioning properly after exertion.
Click to expand...

What can people do to avoid triggering PEM?

Pacing...
...
people should manage their energy so that they stay below their individual limit. How can they do that?
It’s difficult in everyday life, but there are helpful tools. Compression garments and increased salt intake, for example, help patients who quickly develop circulatory problems. Breathing exercises that stimulate recovery are also central — for example, cyclic sighing.

You’ll have to explain that.

In cyclic sighing, you inhale through the nose in two steps: the first half of the air into the abdomen, then — after a brief pause — the rest into the chest. Then you exhale very slowly through the mouth, supported by an audible sigh. It’s only a short interruption of an activity, but the effect is completely underestimated. Often, patients don’t need to radically change their lives to stabilize. Many also benefit greatly from wearables, such as a smartwatch or a smart ring.

How exactly?

We are currently analyzing wearable data from more than 600 affected individuals. It appears that resting heart rate at night is an important marker. If someone knows that their resting heart rate is normally around 50 beats per minute, and it deviates upward by, for example, seven beats over one or two nights, then they are probably sliding into PEM. They can respond by slowing down early to prevent symptom worsening. Simply increasing activity steadily does not work here. Conditioning programs improve the performance of people with PEM the least. Instead, there is a risk of symptom exacerbation.
Click to expand...
 
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