News from Germany

I think those are related, in that 15M Euros have been made available, and Lauterbach wants 60M more:
Federal Ministry of Education and Research (BMBF) said:
Research funding at #MECFS is a concern for BM @starkwatzinger. 15 million euros have been made available over three years for the new funding measure. This will also help many #LongCOVID & #PostCOVID patients: ME/CFS is considered the most complex form of this disease.
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ZDFheute said:
Long Covid: Lauterbach wants 60 million euros extra
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rvallee said:
I think those are related, in that 15M Euros have been made available, and Lauterbach wants 60M more:
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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.
 
EndME said:
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.
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Ah yeah that's what I meant. Poorly phrased, just about what he meant by "more".

And for what it's worth:
Karl Lauterbach said:
“We will ensure that more money is available internationally for research into Long Covid”
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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

It goes without saying that patients must give their consent to treatment. What is decisive is the basis on which they do so. Politically, the guiding principle of informed patients has prevailed. This is a goal to which physicians are committed - but a case from Great Britain shows that this is not always self-evident. A case that certainly revolved around concrete health consequences.
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It is true that Montgomery had agreed to a vaginal birth. However, the risk of shoulder dystocia, its conceivable consequences and the possibility of a caesarean section had not been discussed in the hospital beforehand. The reason: the medical staff had considered the risk of such serious consequences to be extremely low.

The mother took the case to court and went and went through all the instances. In 2014, it ended up before the Supreme Court. In its 2015 ruling, the U.K. Supreme Court made it clear that doctors should have informed the woman of the risk - on their own initiative, not on demand, as previous case law had suggested.

The ruling brought about a paradigm shift in the UK, putting patients at the center of medical decision-making. Since then, physicians are no longer only required to make decisions in good faith for the patient's well-being - they are also obliged to actively pass on all relevant information to their patients so that they have a choice between several options. Only then is their consent considered fully given.
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The German Patients' Rights Act has already stipulated since 2013 that patient:in and physician:e should "cooperate to carry out the treatment". According to this general principle, the following passages oblige physicians to "explain all circumstances essential for the treatment", including the prospects of success, risks and alternatives.

However, this requirement does not establish defined participatory decision-making procedures in standard care. Where separate costs would arise - for training courses for physicians, for example, or for the creation of decision-making aids - these have not yet been covered by the health insurance funds as standard.
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In reality, however, participatory decision-making methods are often still a long way off. The role patients, with their naturally subjective lay perspective, should play in medical decisions continues to harbor potential for conflict in medical practices and clinics. Currently, the many reports of Long Covid or ME/CFS patients show that differences can already arise in the understanding of the disease: If people feel that their organic complaints are not taken seriously by doctors, while some practitioners suspect that the patients are "somatizing" psychological problems, i.e. misinterpreting them as a physical illness, joint decision-making is difficult. This is because, depending on how the problem is viewed, the therapeutic consequences can be completely different.
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Mistrust of informed patients

A few year sago an online survey [...] revealed that there is a certain distrust of decisions made at eye level. At the end of 2015, more than half of the 804 participating physicians stated that they found "informed patients" at least "problematic". 45 percent agreed with the statement that self-information triggers unreasonable expectations and demands that burden the work of practices. Almost every tenth respondent was also annoyed that patients had not contacted them first - and seven percent saw self-information as a sign of a lack of trust.
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Link to the original:

https://www.riffreporter.de/de/wiss...same-therapieentscheidung-patienten-autonomie
 
Kitty said:
Follow-up post from @MSEsperanza.
Mistrust of informed patients

"A few year sago an online survey [...] revealed that there is a certain distrust of decisions made at eye level. At the end of 2015, more than half of the 804 participating physicians stated that they found "informed patients" at least "problematic". 45 percent agreed with the statement that self-information triggers unreasonable expectations and demands that burden the work of practices. Almost every tenth respondent was also annoyed that patients had not contacted them first - and seven percent saw self-information as a sign of a lack of trust."
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Is there a reference for the survey @Kitty? The article is paywalled for me.
 
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

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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/1705928343437066732

https://twitter.com/user/status/1705929805349245320
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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).
 
We’ve got some German organisations on our contact list we’re working through for the Cochrane Advocacy.

German Association for ME/CFS | Deutsche Gesellschaft für ME/CFS e.V. have signed. Thank you.


ME/CFS Research Foundation https://mecfs-research.org/
contact@mecfs-research.org we’ve not yet contacted


Fatigatio e.V. https://www.fatigatio.de/ - https://www.fatigatio.de/kontakt Contact form message sent 26 Sept. We had an automated response. No reply yet


Lost Voices Foundation https://lost-voices-stiftung.org/ -nicole.krueger@lost-voices-stiftung.org not yet emailed

Long Covid Deutschland - https://longcoviddeutschland.org/ - message sent though the contact form. No reply yet.

if any of our Germany based members know of other organisations we could contact please let me know also if you’re involved in any of the listed ones and can help with contacting :thumbup:
 
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)
 
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