News from Germany

from late August

Puzzling Exhaustion: Consortium Explores Causes of ME/CFS
Misdirected Immune Responses in the Spotlight
Bonn, August 26, 2022. Experts from DZNE are participating in a new research alliance in Germany that aims to investigate the causes of “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” (ME/CFS) in the wake of infectious diseases such as COVID-19 and to contribute to better diagnostic and therapeutic options. The overall project is led by Charité – Universitätsmedizin Berlin and funded by the German Federal Ministry of Education and Research (BMBF) with approximately 2.1 million euros. The subproject coordinated by DZNE will take a close look at deviations in white blood cells – these cells are essential components of the immune system.

According to estimates, around 300,000 individuals in Germany are affected by ME/CFS, including about 40,000 young people under the age of 18. In addition to chronic fatigue, their symptoms often include muscle pain and neurological complaints, such as memory disorders. Many patients have considerable difficulty coping with everyday life. “This clinical picture has been known for decades, but the causes are largely unknown. As a result, although there are attempts of alleviating some of the symptoms, there is no effective therapy at the moment,” says Dr. Anna Aschenbrenner, group leader in systems medicine at DZNE in Bonn. “ME/CFS is known to occur after serious infections, for example, in the aftermath of mononucleosis, herpes infection or COVID-19. As a result of the COVID-19 pandemic, the number of cases is expected to increase significantly. These fall within the spectrum of complaints referred to as Long-COVID.”
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full press release
https://www.dzne.de/en/news/press-r...austion-consortium-explores-causes-of-me-cfs/
 
German Society for Neurology said:
#MECFS :The German Society for Neurology calls for large-scale, interdisciplinary ME/CFS collaborative research projects in order to be able to conduct systematic basic and therapeutic research.
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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:
“ME/CFS is a serious and chronic disease for the vast majority of those affected”: Berlin – Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is still an underestimated and little-known disease. Even if they
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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".
 
rvallee said:
So, this is happening. :wtf:

I love to be discussed by people who know nothing about me and debate over whether my existence is real or not. Love it.


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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
 
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"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" !!!!
 
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.
 
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The chronic fatigue syndrome is the focus of a #Bundestagsdebatte on 01/19/2023. The application is being discussed: “Finally help those affected and their relatives #MECFS . For better health and therapy care, education and recognition"
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So far the German health minister continues to be all talk no walk. Enough that it's looking disingenuous.
 
Long-Covid sufferers protest: “We need more research”

With 400 camp beds in front of the Reichstag, those affected draw attention to Long Covid. They demand support for research and care.

Ricarda Piepenhagen (l) and Elena Lierck demonstrate for those affected by Long-Covid in Berlin Photo: Jörg Carstensen/dpa

BERLIN taz | For example Larissa, 32, from Hesse, works in the mobile nursing service, has been suffering from Long Covid since November 2020. Or Christian, 35, from Saxony-Anhalt, nurse, suffering from Long Covid since 2021. Or Andrea, 55, from Lower Saxony, kindergarten teacher, unable to work since February 2021 – these are just three of many people affected, whose portrait photos were on 400 camp beds, those from the initiative “Not Recovered” and “NotrecoveredKids” were set up in front of the Reichstag on Thursday in the freezing cold. The initiatives want to address the inadequate supply of people with Long Covid to draw attention.

“We need more money from politicians for research, for the approval of medicines,” says Ricarda Piepenhagen, 50, founder of NichtGenesen and who has been unable to work with Post Covid for more than a year. “In the acute phase of Corona, many millions of euros were spent on measures. And now, for the post-Covid sufferers, there is only 16 million euros in funding for research. That’s far too little,” says Piepenhagen, who worked as a teacher in Ueckermünde before her illness.


Elena Lierck is the founder of NichtGenesenKids, her 13-year-old daughter Kalea suffers from the fatigue syndrome ME/CFS as a result of Covid and has not been going to school for a year. “Doctors know too little,” says Lierck, who calls for “compulsory further training” in the health and school sectors for the clinical picture.

In families where, for example, a child falls ill with long Covid and cannot go to school as a result, the youth welfare office sometimes gets involved because the child’s well-being is allegedly endangered by not going to school, says Lierck, “there is a lot of ignorance”.

Union request
The initiatives endorse one request of the Union, which should be negotiated in the Bundestag on Thursday evening. According to the application, ME/CFS sufferers should be better supported. Post-infectious myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) existed before Corona, but can also occur as a late consequence of Covid. The Union’s application speaks of 300,000 ME-CFS long-term sufferers as a result of Corona.

The Union calls for more support for the establishment of competence centers for ME/CFS and the development of “biomedical therapies”. Federal Health Minister Karl Lauterbach (SPD) told the ARD capital studio that 100 million euros were planned for the coming years for better care for long-Covid sufferers. Whether he gets the money in the federal budget is open. For 2022 and 2023, 16 million are earmarked for research projects.
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https://newsingermany.com/long-covid-sufferers-protest-we-need-more-research/

(link to original german text at end of article)
 
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