News from Germany

U-WaTCH | Universitätsmedizin Göttingen

generalpractice.umg.eu generalpractice.umg.eu

The overarching goal of the U-WaTCH project is to investigate whether continuous real-time monitoring using wearables in patients with post-COVID syndrome (PCS) can effectively predict post-exertional malaise (PEM) and related "crashes." These findings will then be used to develop interventions.

The study focuses on investigating the relationship between physiological parameters, recorded by wearables, and patient-reported PEM symptoms. Based on this individual, real-time data, machine learning models will be developed to predict PEM-associated crashes. Data collection will take place in three groups: PCS patients with PEM, patients with inflammatory rheumatic diseases and PEM, and a healthy control group. This will allow not only the characterization of PEM patterns in PCS but also a comparison with other diseases in which PEM occurs.
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I hope this isn't the kind of research we can expect for the foreseeable future.
 
OrganicChilli said:
Really? Smart watch data? Other conditions with PEM?
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Smart watch data seems interesting to me as long as they’re picking ones with higher quality sensors and keeping in mind the measurements aren’t that precise. I agree the Rheumatic diseases and PEM looks worrying and iffy to me. I deplore the watered down trawling definition of PEM championed and legitimised by the DSQ which finds PEM in dozens of other conditions because it isn’t measuring anywhere near as strictly as what we tend to call PEM in the ME/CFS community.
 
OrganicChilli said:
Really? Smart watch data? Other conditions with PEM?
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In general I find such a project very useful.

However, I agree with @Yann04 that there are worries about a watering down and misunderstanding of PEM and that it might be completely unclear what type of group of people the cohort consists of and similarly that it isn't always clear how accurate the wearable data is. Moreover the timeframe of 6 months is relatively short. Its unclear what the daily questionnaires capture but it seems participants get feedback from the Apple Watch, which would in my eyes defeat the purpose of such a study. The mentioning of inflammatory proceses in blood also is an inaccurate.

My initial positive enthusiasm on this has vaned upon closer reading.
 
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Yann04 said:
I deplore the watered down trawling definition of PEM championed and legitimised by the DSQ which finds PEM in dozens of other conditions because it isn’t measuring anywhere near as strictly as what we tend to call PEM in the ME/CFS community.
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This constant hijacking and redefining of the terminology is a terrible problem, and at least some of it is deliberate to try smearing out the concept and making it 'transdiagnostic' to try bringing it under the psycho-behavioural model, in which it has nothing to do with any specific disease process.

Big thanks to Trudy Chalder in particular for leading that relentless self-serving disinformation campaign. :mad:
 
Yann04 said:
Smart watch data seems interesting to me as long as they’re picking ones with higher quality sensors and keeping in mind the measurements aren’t that precise. I agree the Rheumatic diseases and PEM looks worrying and iffy to me. I deplore the watered down trawling definition of PEM championed and legitimised by the DSQ which finds PEM in dozens of other conditions because it isn’t measuring anywhere near as strictly as what we tend to call PEM in the ME/CFS community.
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I highly doubt they’ll find anything useful.

We know from other trials that biometrics don’t do much better than just asking people with ME/CFS how they feel today and how the last day was.

There have been other studies on biometrics for fatigue in general in e.g. MS and they only wound rather weak correlations between objective and subjective data.
 
Chandelier said:
I just discovered Der Freitag’s ME/CFS topic site.
They are featuring articles almost by the week lately
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Is there a new bio-functional-babble ME/CFS star rising in Germany?
www.freitag.de

„Wenn zu viel im Rucksack ist, fällt man um“ – Arzt erklärt ME/CFS bei Kindern

Immer mehr Kinder und Jugendliche leiden an ME/CFS und Long Covid – oft jahrelang, ohne klare Diagnose. Der Arzt Diego Schmidt erklärt im Interview seinen ungewöhnlichen Behandlungsansatz. Gibt es wirklich Hoffnung auf Heilung? Ein Gespräch
www.freitag.de www.freitag.de
Paywalled interview with Dr. Diego Schmidt.
"When there's too much in the backpack, you fall over": Dr. Diego Schmidt on ME/CFS in Children

An increasing number of children and adolescents are suffering from ME/CFS and Long COVID—often for years without receiving a clear diagnosis.
In this interview, Dr. Diego Schmidt explains his unconventional treatment approach.
Is there really hope for recovery?
A conversation.
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His website mentions that business is roaring.
www.drmeddiegoschmidt.com

Dr. med. Diego Schmidt - Startseite

Willkommen bei Praxis Dr. med. Diego Schmidt. Auf dieser WEbseite finden Sie Informationen zu den Leistungen unserer Arztpraxis in Berlin.
www.drmeddiegoschmidt.com www.drmeddiegoschmidt.com
A New Era Begins – Welcome to ZPIMS!

Dear Patient,
Dear Parents,

Over the past few years, we have accomplished a great deal together.
Many of you have been with us for a long time, and for that I would like to thank you sincerely.
Now, a new chapter begins for all of us.

Dr. Diego Schmidt's practice is expanding its services and, effective immediately, is bringing together all medical care related to ME/CFS, Long COVID, PostVac, and related post-infectious multisystem diseases under the umbrella of the new Center for Post-Infectious Multisystem Diseases (ZPIMS).

Important information:
Only this specific area of my previous work—the care of people with post-infectious multisystem diseases—will in the future be offered exclusively through ZPIMS.
Here, we are creating the conditions for more comprehensive patient care, state-of-the-art diagnostics, and a model of medicine that extends well beyond the scope of a traditional medical practice.

This means:
For all questions and services related to these complex conditions, please use the Online Office of our new center from now on.

You will find all information, appointment booking, and contact options on our new website: www.zpims.net

I look forward to welcoming you there and to continuing this journey together in this new chapter.
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English website:

ZPIMS | Zentrum für Postinfektiöse Multisystem-Erkrankungen

zpims.net zpims.net

For more information about his approach, there’s a transcript of an interview.
Google translate link.

Long Covid bei Kindern behandeln - mit Dr. Diego Schmidt - Infoportal zu Fatigue Erkrankungen

Dr. Diego erklärt, wie funktionelle Medizin hilft, Long Covid bei Kindern ezielt zu therapieren, mit Fokus auf Entzündungen, Darm und Ernährung.
www.fasynation.de www.fasynation.de
From the conclusion:

Success Stories and Looking Ahead​

Despite all the challenges, there are many positive examples. Some children and adults who were ill for months or even years have been able to resume their lives, return to school, or go back to work.

Recovery is often slow and requires patience, humility, and ongoing treatment.

Neurogenesis (the formation of new nerve cells) in the hippocampus is regarded as a sign of recovery, supported by curiosity and cognitive activity.

Summary​

This interview provides an in-depth discussion of the complex topic of ME/CFS and Long COVID in children from the perspective of functional medicine. The condition is described as a multisystem disease with a wide range of symptoms that are often difficult to diagnose and treat.

A holistic assessment of the patient's medical history, immune system, metabolism, gut health, and psychosocial factors is considered essential. Nutrition and individually tailored treatment play a central role. Despite the significant challenges, the interview expresses hope based on consistent treatment and emerging scientific insights. It also draws attention to the societal barriers faced by patients and calls for improved systems of support.
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From a Bluesky post by Initiative LiegendDemo.
Machine Translation:
Mourning March
ME/CFS is a severe physical illness.
Psychologizing it puts lives at risk.

#mecfskills
August 7, 2026
12:30–2:00 p.m.

Berlin
Robert Koch Memorial
Robert Koch Square

Please wear muted or dark clothing and sunglasses if possible. You are also welcome to bring handmade crosses and a stone bearing the name of someone who has died.
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August 7–8, 2026
liegenddemo.de

Severe ME Awareness Days​

Psychologizing ME/CFS puts lives at risk!

Schedule​

12:30 p.m. – Gathering at Robert Koch Square(Robert-Koch-Platz)

We will walk together to the Charité's Bettenhochhaus (High-Rise Hospital Building). There, we will place our stones and lie down on the pavement. (After the demonstration, everyone will take their stones back.)

2:00 p.m. – End of the event

Please wear muted or dark clothing and sunglasses if possible. You are also welcome to bring handmade crosses and a stone bearing the name of someone who has died.
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www.mecfs.de

Sammlung von Gutachten — Deutsche Gesellschaft für ME/CFS

Die Deutsche Gesellschaft für ME/CFS sammelt Gutachten von ME/CFS-Betroffenen
www.mecfs.de www.mecfs.de
The German ME/CFS Society is collecting independent medical assessment reports. They are used as evidence in advocacy efforts directed at, for example, policymakers and the media regarding the way people with ME/CFS are assessed in medical and disability evaluation processes.

The Assessment Practice for ME/CFS​

Why We Collect Medical Assessment Reports​

The German ME/CFS Society regularly receives inquiries about the current assessment practices affecting people with ME/CFS, for example from policymakers or the media.
To better substantiate our observations, we would like to gain a broader understanding of the current situation.
This will enable us to present the needs of people with ME/CFS and any shortcomings in the assessment process on a well-founded basis in future discussions.
Specific cases also help us demonstrate where changes or additional training for assessors may be needed.

To this end, we invite people with ME/CFS to submit medical assessment reports prepared in private, administrative, or judicial contexts, as well as, where applicable, any decisions based on those reports.

Please Note​

  • We are interested in assessment reports that were prepared in Germany or used in proceedings conducted in Germany.
  • If possible, please also answer the accompanying questions.
    We have deliberately kept these to a minimum in order to reduce any additional burden.
    You may use the free-text field to provide any further comments about your personal assessment experience.
  • Wherever possible, please redact all personal information from your documents before uploading them.
    After redaction, it should no longer be possible to identify the person concerned.
    If uploaded documents have not been fully redacted, we will complete the redaction before beginning our analysis.
  • We store all submitted data in compliance with applicable data protection requirements on a server operated by us in Germany and use it solely for the purposes of this analysis.
    Under no circumstances will we share the assessment reports with third parties.
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ME/CFS Research Foundation invests €2.4 million in new research projects

mecfs-research.org

ME/CFS Research Foundation investiert 2,4 Millionen Euro in neue Forschungsprojekte - ME/CFS Research Foundation

Noch in diesem Sommer starten sieben neue Forschungsprojekte mit Förderung der Stiftung in Höhe von insgesamt 2,4 Millionen Euro. Die Projekte wurden aus mehr als 30 Einreichungen von einer wissenschaftlichen Jury aus internationalen Expert*innen sowie dem wissenschaftlichen Beirat und dem Team...
mecfs-research.org mecfs-research.org

You can change the setting to "english" in the lower right corner of the page.

1. TAME – CD19-targeted B-cell therapy for post-infectious autoimmune ME/CFS using the monoclonal antibody tafasitamab: open-label follow-up study to a randomized, placebo-controlled Phase II trial of the CD19 antibody inebilizumab

2. Genetic Determinants of Post-Infectious ME/CFS: a 50-Family Study

3. STRAT4PAIS — Immune Endotypes of Paediatric Post-Acute Infection Syndromes (PAIS): Mechanistic Stratification of ME/CFS and Related Post-Infectious Conditions

4. Molecular dissection of cell death-mediated inflammation as a driver of virus-induced ME/CFS

5. Myoflame-19 Autoimmune Substudy: GPCR Autoantibodies as Mechanistic Biomarkers of Endothelial Dysfunction in Post-COVID ME/CFS

6. Analysis of T-cell and B-cell receptor repertoires via single-cell RNA sequencing in patients with ME/CFS and post-COVID syndrome

7. MARK-ME – Minimal Biomarker Panels for Diagnosis and Stratification of ME/CFS
 
See thread on an article from the German ME/CFS Society:

German ME/CFS Society: "Rehabilitation for ME/CFS carries a high risk of worsening the condition" [Translated title]
Chandelier said:
www.mecfs.de

Rehabilitation bei ME/CFS birgt hohes Verschlechterungsrisiko — Deutsche Gesellschaft für ME/CFS

Rehabilitation bei ME/CFS birgt ein hohes Risiko für Zustandsverschlechterungen Studienlage spricht gegen Reha-Empfehlung Rehabilitation ist bei vielen Krankheiten ein bewährtes Konzept zur Unterstützung der Genesung und Wiedereingliederung ins Berufsleben. Auch bei einem Antrag auf...
www.mecfs.de www.mecfs.de
Google Translate link.

1100-word article by the German ME/CFS Society:

Their argumentation is based on the following papers (all s4me links):
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Long Covid und ME/CFS – Neues Stufenmodell soll Versorgung von PAIS-Betroffenen verbessern |

www.gruene-hamburg.de www.gruene-hamburg.de
The UKE has a pretty bad reputation when it comes to PAIS.
I couldn’t find more details about the proposed 3-tier care model.

LONG COVID AND ME/CFS – NEW THREE-TIER MODEL AIMS TO IMPROVE CARE FOR PEOPLE WITH PAIS

People living with Long COVID, ME/CFS, and other forms of Post-Acute Infection Syndrome (PAIS) often struggle to access medical care that meets their needs. To address this gap in care, the governing parliamentary groups of the SPD and the Greens have jointly introduced a motion calling for the implementation of a three-tier outpatient care model at the University Medical Center Hamburg-Eppendorf (UKE). The aim is to provide faster access to specialized diagnostics and treatment while improving coordination of care. The Hamburg Parliament (Hamburgische Bürgerschaft) will vote on the SPD-Green motion at its session on 2 September.

Linus Görg, health policy spokesperson for the Green parliamentary group in Hamburg, said:
“People affected by Post-Acute Infection Syndrome often require highly specialized treatment, yet this is precisely what is lacking in many places. The tiered model developed at the UKE establishes a clear care pathway: it strengthens primary care provided by general practitioners, supports patients through a dedicated care navigator function, and provides specialized diagnostics and treatment for particularly complex cases. Experts made it clear during a hearing in the Health Committee earlier this year that such a model would significantly improve care for people living with PAIS in Hamburg. With our motion, we want to send a clear signal in support of implementing this model and encourage the UKE to take the important step of obtaining authorization to provide outpatient care. At the same time, we must work at the federal level to improve conditions for people with PAIS and intensify discussions with health insurers and long-term care associations so that practical solutions can be developed together.”
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Claudia Loss, health policy spokesperson for the SPD parliamentary group in Hamburg, added:
“Long COVID, ME/CFS, and other forms of Post-Acute Infection Syndrome present enormous challenges for those affected. For many patients, the journey to an accurate diagnosis and appropriate treatment remains a long and distressing one. That is why we want to improve coordination across the healthcare system and make access to specialized diagnostics and treatment easier. The UKE needs the necessary institutional authorization to enable it to provide outpatient care for patients with Post-Acute Infection Syndrome in the future. At the same time, we must pay greater attention to the care of children and adolescents. Successful initiatives such as the CFS Kids Mobile for affected children and young people should not have to rely on donations indefinitely. The Senate and the statutory health insurance funds must work together to develop sustainable solutions and secure long-term funding.”
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Background​

The care model developed at the UKE was presented to the Health Committee in February 2026. It consists of three sequential levels of care: primary care delivered by general practitioners, a coordinating patient navigator function, and specialized diagnostics and treatment. Successful implementation will require sustainable structural funding as well as formal authorization for the UKE to provide outpatient care for patients with PAIS.
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Some financial advice from a German caregiver on r/cfs.
Both his wife and a son are pwME.

Financial experiences of a German family with two severe ME/CFS cases​

Saw no posts about this topic. So I write one as I often hear of extreme financial hardship due to ME/CFS. I`m caregiver to my son Jonas for 12 years (very severe). My wife suffers from ME/CFS for 25 years. I`m the only breadwinner here, all depends on me. I`m German (1 K = 1.000 €). In your country things might differ, but what is universal: You shouldn`t give up after one try. Decisions depend on how people understand your case. I hope there's something here that will help you on your journey.

  1. You're probably in it for the long run. Took me years to check the following financial issues.
  2. Overcoming pride: I take money from relatives for 11 years now, every month. 100 K? 150 K in total? Dunno, didn`t count. Felt wrong for me, in the beginning. But it really saved our family finances.
  3. I never cheat to get support. In the long run, trust is worth much more than short-term gains. Takes years to build trust and only one mistake to lose it.
  4. Tax declaration. Really complicated stuff. Every year I need a week to do it. And I gather every proof for health expenses ("außergewöhnliche Belastungen"). This year, I discovered new possibilities due to my 2. son reaching an age limit (Kindergeld). But it`s really worth it: I get back nearly all income tax: 10 K every year.
  5. Legally appointed guardian to my son Jonas: This offered completely new perspectives. Much easier proof for public offices, etc. less risks in any regard. Wasn`t easy at all to become Jonas`guardian, but worth it.
  6. Department of Social Services finances our Polish caregiver assistance. Worth: 25 K a year. We were the first such case there. As they really understood our case they interpreted their instructions in a way that allowed them to support us. Massively! I`m still full of gratitude to all of them. Every year somebody of the department visits us at home, to check circumstances.
  7. Health insurance: Just an example: We managed to get an immunoadsorption for Jonas. 30 K. 3 Medical Service reports (MdK-Gutachten), my 3 legally substantiated rebuttals. Took 1 year. In the end, again, employees were on our side. They weren't forced to do that. But it gave them the legal opportunity and therefore, they did it. Took many years since they all knew our case.
  8. There was much more. Pension for my wife as my son's 2. caregiver, fights for child benefit (Kindergeld), reimbursement of copayments for medications and so on. Depends on your situation what is possible for you. But it is always worth to look out for new possibilities.
Today, after all those years, our finances are stable. No worries. At least one serious problem less. I'm even refusing to accept any more donations because I know that others need them more urgently.

Good luck to all of you.
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Chandelier said:

Long Covid und ME/CFS – Neues Stufenmodell soll Versorgung von PAIS-Betroffenen verbessern |

www.gruene-hamburg.de www.gruene-hamburg.de
The UKE has a pretty bad reputation when it comes to PAIS.
I couldn’t find more details about the proposed 3-tier care model.
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I also remember that UKE is a stronghold for doctors who advocate for the view that ME is psychiatric, having launched considerable research along those lines. At the same time, university hospitals are large enough to accommodate differing perspectives—this group might well be different, which would make sense. In Germany, largely thanks to Scheibenbogen at Charité and influential upper-middle-class patient advocacy groups like DG ME/CFS and Fatigatio, the consensus has clearly shifted toward understanding ME/CFS as an underresearched, somatic condition.
 
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