News from Germany

https://twitter.com/user/status/1697934275830559013

 

It's not really the psychosomatic part, which is coping with a severely debilitating disease that we're "fighting" with. But I'd find more help with that on these forums than a psychologist or psychiatrist could give me.

 

I think those are related, in that 15M Euros have been made available, and Lauterbach wants 60M more:

 

It doesn't seem so. The 15 Million are 5 Million per year for medical research.

What Lauterbach wants, is 60 Million extra for healthcare research, for which 40 Million have already been allocated by him. However, as we know healthcare research is extremely useless if you don't do biomedical research. Unfortunately, Lauterbach can only advocate for more healthcare research since that is within his department, whilst Stark-Watzinger and Lindner remain stubborn on spending useful money on biomedical research which is what is actually needed.

 

Ah yeah that's what I meant. Poorly phrased, just about what he meant by "more".

And for what it's worth:

Should probably assume that this means through the EU, as there is a proposal for major funding and Germany is the biggest player in the EU.

 

For what it's worth Karl Lauterbach seems to be the first and only health minister to ever take ME/CFS and Long Covid seriously and speak publicly about all problems.

I hope some change is still possible under his reign, especially since what comes next doesn't look good at all, but knowing that the funding for biomedical research has been limited to 5 Million Euros per year certainly doesn't put too much hope in me, either his words don't have sufficient power or the FDP is simply reluctant to do anything no matter what is happening.

 

From @MSEsperanza:

IQWiG: Does shared decision-making between doctor and patient lead to better treatment results?

(Not specifically on ME/CFS -- didn't check how they investigated the topic )

Google translate -- slightly edited to remove glitches with inserted links:

Preliminary ThemeCheck report shows no benefits for health status or quality of life.

Please comment on the preliminary report by October 5th, 2023.

On behalf of the Institute for Quality and Efficiency in Healthcare (IQWiG ), an interdisciplinary team of scientists under the leadership of DARUM GbR in Cologne is currently investigating whether joint decision-making by doctors and patients when choosing a therapy leads to better results can.

To answer this question, the science team is examining the benefits of different measures or their combination to support shared decision making (participatory decision making = PEF or shared decision making = SDM ) compared to each other or compared to the standard approach without PEF measures. This happens with regard to patient-relevant endpoints such as “health status” or “quality of life”. In addition, endpoints that play a role in shared decision-making are also reported, such as “knowledge”, “correct assessment of risks” or “doctor-patient communication”.

Preliminary result:

The scientific team finds in the now available preliminary HTA report no advantages or disadvantages of PEF measures for the patient-relevant outcomes. For the so-called PEF-relevant endpoints examined in the supplementary analysis, the evaluated studies show an advantage compared to standard care.

Google tranlsate link: https://www-iqwig-de.translate.goog..._sl=de&_x_tr_tl=en&_x_tr_hl=de&_x_tr_pto=wapp

Original:

IQWiG: Führt eine gemeinsame Entscheidungsfindung von Ärztin und Patient zu besseren Behandlungsergebnissen?

https://www.iqwig.de/presse/pressemitteilungen/pressemitteilungen-detailseite_100418.html

 

Follow-up post from @MSEsperanza.

Adding to the post on IQWiG's preliminary report above:

I think the issue should not be 'shared decision making' but 'informed decision making' -- as long as patients are able to make decisions, they have to decide, not the clinicians. The clincians must share all available relevant information and make sure their patients understand though.

Journalist Martin Rücker makes this point, even though maybe not as explicitly as I understand it, in his coverage of the IQWiG news on Riffreporter (paywalled).

He also refers to ME/CFS and LC:

Choosing the right treatment: What happens when patients have a say in the doctor's office

Link to the original: https://www.riffreporter.de/de/wiss...same-therapieentscheidung-patienten-autonomie

Google translate link: https://www-riffreporter-de.transla...en&_x_tr_hl=de&_x_tr_pto=wapp&_x_tr_hist=true

Who should decide which therapy is the right one: professionally competent doctors – or the patients who know themselves and their bodies best? The question has potential for conflict. Now a comprehensive report has analyzed the impact of shared decision-making processes in medical practices. The results are quite surprising.

Some quotes (deepl translate):

The Montgomery Case

Mistrust of informed patients

Link to the original:

https://www.riffreporter.de/de/wiss...same-therapieentscheidung-patienten-autonomie

 

I don't know, to be honest, I posted it on behalf of @MSEsperanza. It's paywalled for me too, so I've only been able to read the quoted and translated parts.

 

@Midnattsol, a follow-up message from MSEsperanza:-

The reference that was asked for is:

Bertelsmann Stiftung; BARMER GEK (Eds),
Gesundheitsmonitor Nr. 2/2016: Informierte Patienten und unzureichend vorbereitete Ärzte?

https://www.bertelsmann-stiftung.de...atienten-und-unzureichend-vorbereitete-aerzte

Google translate link:

https://www-bertelsmann--stiftung-d..._sl=de&_x_tr_tl=en&_x_tr_hl=de&_x_tr_pto=wapp

 

These specific links haven't been posted before but perhaps the exact same information was on another link?

1. Bekanntmachungen 2023

01.09.2023

Richtlinie zur Förderung interdisziplinärer Verbünde zur Erforschung der Pathomechanismen von Myalgischer Enzephalomyelitis/ Chronischem Fatigue Syndrom (ME/CFS)
vom 01.09.2023 - Abgabetermin: 11.12.2023

https://www.gesundheitsforschung-bmbf.de/de/16423.php

---
Google English translation:
https://www-gesundheitsforschung--b...=de&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

Guideline to promote interdisciplinary collaborations to research the pathomechanisms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
from September 1st, 2023 - Deadline: December 11th, 2023

 

https://twitter.com/user/status/1711640041041076684


Translation of Tweet:
There is news First post-COVID patients will be treated as of autumn 2023.

Summary of website:

reCOVer: BC-007 study starts. First post-COVID patients will be treated as of autumn 2023. reCOVer will be launching a Phase 2 (n=30) clinical research study into BC007 in cooperation with other researchers.

Furthermore Erlangen has been also added to the list of sites currently recruiting for the ongoing BC007 Phase 2 study (BLOC).

 

That's great @NelliePledge, thank you for doing this!

There's also NichtGenesen and their english speaking analogue NotRecovered, both are based in Germany from what I know. Unfortunately, they don't seem to be as well setup as other organisations (they aren't an NGO, e.V. or similar) but they have a big reach via social media and have been in talks with policitans a lot and organised different protests. Both have contact pages on their website.

NichtGenesen: https://twitter.com/NichtGenesen, https://www.instagram.com/nichtgenesen?igshid=YmMyMTA2M2Y=, https://nichtgenesen.org/

NotRecovered: https://twitter.com/Not_Recovered, https://www.instagram.com/notrecovered_official/, https://notrecovered.org/ (additional contact details of one of their co-founders https://twitter.com/TimoStrotmann)