News from Germany

from late August

Puzzling Exhaustion: Consortium Explores Causes of ME/CFS

full press release
https://www.dzne.de/en/news/press-r...austion-consortium-explores-causes-of-me-cfs/

 

https://twitter.com/user/status/1588522973392408576


There seem to be problematic statements (in the replies) that don't inspire confidence that our goals are aligned or that they understand the issues. But if this is serious, getting at the negotiating table is how mutually exclusive positions can get reconciled. Maybe. Unless they intend to dominate all discussion with their way or no way.

 

https://www.charite.de/service/pres...i_post_covid_und_chronischem_fatigue_syndrom/

Post-COVID syndrome (PCS) can vary greatly in severity, but is usually accompanied by severe exhaustion. Some of those affected suffer from myalgic encephalomyelitis/chronic fatigue syndrome, ME/CFS for short. Knowledge of targeted therapies for both diseases is still in its infancy. Researchers from the Charité - Universitätsmedizin Berlin have now founded a National Clinical Study Group to conduct initial clinical studies with drugs for the treatment of PCS and ME/CFS. The project is funded by the Federal Ministry of Education and Research ( BMBF ) with around ten million euros.

About one in ten suffers from mild to moderate COVID-19-Illness with persistent symptoms, often including severe fatigue and exercise intolerance. If these symptoms last more than four weeks, it is called Long COVID. The World Health Organization (WHO) has defined post-COVID syndrome as symptoms that significantly impair daily life and last more than three months. Young, previously healthy women are most commonly affected. Like a current study by the Charitéshows, some PCS patients develop ME/CFS - a complex disease with varying degrees of physical and mental symptoms, including weakness and exhaustion (fatigue), exercise intolerance, difficulty concentrating, sleep disorders, and muscle and headaches. ME/CFS is often triggered by an infectious disease. Even before the corona pandemic, an estimated 250,000 people in Germany were suffering from it.

“Unfortunately, we still know too little about the exact disease mechanisms of ME/CFS and the post-COVID syndrome. That is why there are no specific medical treatments. As a result, many of those affected are constantly ill and are no longer able to work or support their families. The seriously ill are bedridden,” saysprof dr Carmen Scheibenbogen, Acting Director of the Institute for Medical Immunology at the Charité. Under her direction, doctors and scientists from different disciplines and several universities have come together in a National Clinical Study Group (NKSG).

This wants to initiate and carry out the first clinical studies with drugs and medical procedures for PCS and ME/CFS. The aim is to get effective therapeutic approaches approved so that they are available to all patients. The focus is on using medicines that are already available for other diseases to achieve rapid progress in treatment. profDisc sheet explains: “Preparing and conducting clinical studies is now very time-consuming and expensive. With the Charité BIHClinical Study Center led by Dr. Susen Burock we have a great partner with a lot of expertise at our side.” The study group will initially examine three groups of drugs. They are directed against inflammation, circulatory disorders and autoantibodies - these are antibodies that attack certain endogenous proteins. In addition, all clinical studies are accompanied by a comprehensive biomarker and diagnostic program, as there are currently no specific diagnostic tests for ME/CFS or PCS. In this way, the researchers want to gain a better understanding of the processes involved in the diseases and find out which factors are relevant to the effectiveness of the drugs.

"Initially, we will only be able to include patients in our study who take part in our observational studies or who we already know from our university outpatient clinic," says Prof. Scheibenbogen, describing the specific procedure. "In a next step, we would then like to carry out larger studies at various clinics in Germany and work together with the pharmaceutical industry, of course also to test other promising drugs."

 

The Deutsches Ärzteblatt is the official publication of the German Medical Association and the National Association of Statutory Health Insurance Physicians:

https://twitter.com/user/status/1591774139362287617

 

Google Translate link: https://www-aerzteblatt-de.translat...uto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

It's an interview with Dr. Carmen Scheibenbogen, and she naturally portrays ME accurately. She explicitly says things like, "The leading symptom of the disease is ...post-exertional malaise (PEM)." and "Psychosomatic hypotheses on the etiopathogenesis of infection-triggered ME/CFS are no longer tenable".

 

Anyone was able to attend/ watch this one?

Link to the event:
https://www.dgnvirtualmeeting.org/#!contentsessions/67691

Link to a related press release:

https://dgn.org/artikel/2413

google translate:

https://dgn-org.translate.goog/artikel/2413?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=de&_x_tr_pto=wapp

A press release from the same day has the title:
"ME/CFS: "We need large-scale, interdisciplinary ME/CFS collaborative research projects"

https://dgn.org/artikel/2414

google translate:

https://dgn-org.translate.goog/artikel/2414?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=de&_x_tr_pto=wapp

 

An interdisciplinary Long COVID congress was held in Germany on 18-19 November. https://long-covid-kongress.de/english/welcome

agenda: https://long-covid-kongress.de/file...uments/LC-Kongress-22_Programm_08-11-2022.pdf

I haven't watched the livestream.

This journalist attended the congress and posted many tweets. https://twitter.com/user/status/1593969853345370112

 

"There is also a pathophysiological idea for the effectiveness of broccoli sprout powder. But, according to Dr. Daniel Vilser/UK Jena: there is a lack of large therapy studies everywhere" !!!!

 

Broccoli sprout powder? I think I'll stick to fairy dust smoothies for now.

 

The tweet from Martin Rücker was saying that a majority of people that physically exert themselves get worse btw. Körperliche belastung = physical exertion.

 

The German Society for General and Family Medicine (DEGAM) published its new guideline on "Fatigue". One chapter is about ME/CFS.

https://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002_Leitlinie Muedigkeit/Aktualisierung Dezember 2022/Langfassung Leitlinie Müdigkeit.pdf

They seem to follow and explicitly recommend the NICE and EUROMENE guidelines, as well as the CDC's recommendations.
Though they refrain from providing "a DEGAM guideline in the true sense of word" (because of the "complex situation, the relative rarity of the disease among all causes of unaccustomed fatigue, and the dynamic of unusual fatigue and the dynamic development of research").

The "guideline" will be valid until 12/2027. What really strikes me is a minority report (special vote) by

• German College for Psychosomatic Medicine (DKPM)
• German Society for Psychosomatic Medicine and Medical Psychotherapy (DGPM)
• German society for Internal Medicine (DGIM)
• German Society for Psychiatry and Psychotherapy, Psychosomatics and Neurology (DGPPN)

On 2-3 pages (p.63 onwards) they were allowed to describe their usual horrific babble.

For example
"However, in the opinion of the undersigned professional societies, patients with CFS should be offered staged activation and suitable psychotherapy methods after careful examination and indication, and iatrogenic passivation and chronification should be avoided."

Criticising the NICE guideline they write "Furthermore, Flottorp et al. describe (after consensus was reached) : "that polemical interactions became a battle within the guideline committee, that three members withdrew from guideline development, and that the remaining members did not accept the concerns of leading medical societies"."

Below their special vote (in bold):
"Note: Patient advocacy groups (on ME/CFS) and representatives of EUROMENE are scientifically critical of this special vote and fear harm to affected persons."


Edit: Once again, thank you to all involved with the NICE guideline. I don't want to imagine how screwed we'd be if the NICE guideline were different.

******
Germany: 2022 Society for General and Family Medicine (DEGAM) Fatigue Guideline
We've created a new thread for the discussion about this guideline, and have moved a number of posts there.

 

https://twitter.com/user/status/1614581346239668224


So far the German health minister continues to be all talk no walk. Enough that it's looking disingenuous.

 

"Stunning scenes from the silent protest in Berlin today as #MyalgicE was debated in the Bundestag (German Parliament). Check out the hashtag #NichtGenesen (meaning Not Recovered) for more powerful images."

 

Long-Covid sufferers protest: “We need more research”

https://newsingermany.com/long-covid-sufferers-protest-we-need-more-research/

(link to original german text at end of article)

 

Not sure if this will be in German or English.

https://twitter.com/user/status/1624071002945724416

 

https://twitter.com/user/status/1623680560752168962

 

https://twitter.com/user/status/1624459656318840832

 

https://twitter.com/user/status/1628314497352974344


Today in the
@SZ
: a guest article by psychosomatics expert Peter Henningsen on #LongCovid https://sueddeutsche.de/kultur/long-covid-psychsomatik-therapie-1.5751788 (€). In it he criticizes that his discipline is put in the "dirty corner" and emphasizes ...

The headline of the article in the South German Newspaper is "Cancel Culture in Medicine"

 

They've been putting themselves in the "dirty corner" with pseudo science. No outside help needed.