News from Germany

[Jonathan Edwards]

From their website:

It all sounds a bit vague and unregulated.

 

[Hutan]

Many people living with ME/CFS and Long COVID are currently facing a severe lack of adequate medical care. Specialized centers are overwhelmed, waiting times are extremely long, and even after finally securing an appointment, treatment often ends without concrete therapeutic support or medication options.

At the same time, many patients report that certain off-label medications, as well as non-pharmacological approaches, have significantly improved their quality of life. Yet only a small number of physicians are currently willing to explore these treatment options together with their patients. This is exactly where we want to make a difference.

It all sounds a bit vague and unregulated.

Yes. It could be useful, even very useful. But, the odds aren't good. I can't think of a single dedicated ME/CFS service that isn't a source of substantial misinformation and harm.

 

[OrganicChilli]

U-WaTCH | Universitätsmedizin Göttingen

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.

I hope this isn't the kind of research we can expect for the foreseeable future.

 

[EndME]

I hope this isn't the kind of research we can expect for the foreseeable future.

From a swift read, this seems like a very sensible project to me and along the lines of what many have been advocating for. Happy to finally see it.

Edit: Upon closer reading not too happy anymore.

 

[OrganicChilli]

From a swift read, this seems like a very sensible project to me and along the lines of what many have been advocating for. Happy to finally see it.

Really? Smart watch data? Other conditions with PEM?

 

[Yann04]

Really? Smart watch data? Other conditions with PEM?

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.

 

[EndME]

Really? Smart watch data? Other conditions with PEM?

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.

 

[Sean]

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.

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.

 

[Utsikt]

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.

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]

I just discovered Der Freitag’s ME/CFS topic site.
They are featuring articles almost by the week lately

Is there a new bio-functional-babble ME/CFS star rising in Germany?

„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

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.

His website mentions that business is roaring.

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

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.

English website:

ZPIMS | Zentrum für Postinfektiöse Multisystem-Erkrankungen

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

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.