News from Germany

[rvallee]

Source: https://www.zeit.de/politik/deutschland/2025-07/me-cfs-karl-lauterbach-forschung-investition

This doesn't get to the source of the problem, though. Yes, the states are failing, but they aren't doing this on their own. They have medical advisers, councils, agencies, departments, and so on, staffed by experts who promote the standard lie about this all being a fake psychogenic illness, or whatever it is they happen to believe.

No government in the world will make a big push for medical research about a disease that medicine not only does not believe in, but is willing to throw everything pushing back against anyone who tries to solve it.

The root cause of the problem is the medical profession. Nothing will change until the blame is pointed where it belongs. Governments will always be able to hide behind them, and they won't able to overcome seeing the economic and financial disaster that it causes when they keep being assured by 9/10 medical expert that doing something is exactly what causes the problem in the first place, no matter how insane and false this assertion is.

Please don't give up! Research is running at full speed.

And most of us here are sick of hearing this nonsense. Research is barely crawling along, facing every obstacle in the way. This is basically the perfect context for indefinite failure. None of this will work without a significant level of interest and motivation within the medical profession. It may have gone from 1 all the way to a solid 2, on a scale of 100, because of Long Covid, but that's the very best case. It probably needs a solid rounding up to get all the way up there. The scale of this failure is beyond absurd, it makes Lysenkoism seem smart, because at least the Soviets gave up on it.

It's still great to see this motivation happening, but until the medical profession is held accountable for decades of intentional failure, nothing will change. It will need to hurt, there will have to be severe consequences and punishment to break this cycle of systemic violence and negligence. This should be treated with the seriousness of someone intentionally detonating a nuclear bomb in a large city, with the whole chain of command somehow going along with it. Anything short of that will either fail, or fall so short of it that it's the same.

The whole idea behind "justice delayed is justice denied" is that we have short lifetimes. If a solution is found 30 years from now, almost none of us will be able to enjoy it, it will have been denied to us, and it has already been denied to tens of millions who are already dead.

 

[Sean]

The scale of this failure is beyond absurd, it makes Lysenkoism seem smart, because at least the Soviets gave up on it.

Mao had to accept that killing every sparrow in sight was not a good idea.

It's still great to see this motivation happening, but until the medical profession is held accountable for decades of intentional failure, nothing will change. It will need to hurt, there will have to be severe consequences and punishment to break this cycle of systemic violence and negligence. This should be treated with the seriousness of someone intentionally detonating a nuclear bomb in a large city, with the whole chain of command somehow going along with it. Anything short of that will either fail, or fall so short of it that it's the same.

Yes, there must be appropriate proportionate consequences for those responsible for this failure, or it will happen again.

The whole idea behind "justice delayed is justice denied" is that we have short lifetimes. If a solution is found 30 years from now, almost none of us will be able to enjoy it, it will have been denied to us, and it has already been denied to tens of millions who are already dead.

Allowing those responsible to escape any meaningful accountability during their lifetime is not justice.

 

[Mij]

Merged
The restrictive approval process for disability pensions is putting chronically ill people in dire straits – despite scientific findings. The case of a woman with ME/CFS from Lower Saxony illustrates the problems.

 

[Peter T]

A short piece in German

Using Google Translate:

On the day Emilia Kühne learned from the German Pension Insurance (DRV) that she could now return to work full-time, she lay in her bed in a darkened room. For the 39-year-old, it was another day in which she only had the strength for five minutes, just enough to sit up in a wheelchair and eat something. She spent the rest of the time lying down, shielded as best as possible from external stimuli.

In a letter dated October 17, 2024, the DRV Braunschweig-Hannover informed Kühne that she would no longer receive a disability pension. "According to our medical assessment, you can return to work for at least six hours a day under the usual conditions of the general labor market," it stated.

And it's not an isolated incident. Rather, Kühne's story shows how difficult it can be for seriously ill people to assert their pension entitlements – and how little the pension insurance company's decisions revolve around medical necessity.

 

[Snow Leopard]

This is awful.

 

[Mij]

I received a letter from the federal pension plan 3 months after applying for disability that I was 'capable of gainful employment'. Back in the early 90s we were able to call Health Canada directly, so I called and asked to speak to the judicator(a nurse) who decided my case and asked HOW she came to her decision that I can work. She had no answer. She was very understanding after I explained my situation and said I can appeal it and she would look into it further.

We would never be able to call direct today.

 

[EndME]

Current statement by the German Neurological Society (translated to english):

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is currently receiving particular political and media attention. It is a complex chronic disease with a wide range of symptoms that is difficult to diagnose and treat due to the lack of disease markers or established treatments.

To date, experts have taken a mixed view of the disease: While ME/CFS is considered by some to be dramatically underdiagnosed or neglected, others question it as a primarily somatic disease. The topic is particularly relevant for neurology, as many sufferers seek advice here, and receives a high level of scientific attention at the DGN. From a neurological point of view, it is problematic that the term ‘encephalomyelitis’ postulates an inflammation of the brain and spinal cord, which is generally not detectable in ‘ME/CFS’. Since, in addition to the potential cure and alleviation of symptoms, the protection of sufferers is also at stake, a balanced and evidence-based approach should be taken in order to avoid supporting unscientific diagnostics and therapies that could jeopardise sufferers.

The most important arguments here are:

In the last five decades, it has not been possible to identify ME/CFS with biomarkers such as blood or cerebrospinal fluid tests or in brain imaging (especially MRI).

In the main symptom of post-exertional malaise (PEM), there are many findings on group differences between ME/CFS sufferers and healthy controls; however, the exact biological causes/mechanisms of the symptoms remain unclear.
It is a multifaceted symptom pattern that is difficult to localise and in some cases takes on forms that cannot be explained anatomically or physiologically. It overlaps with numerous disease phenomena from internal medicine, rheumatology, endocrinology, psychiatry, psychosomatics and infectiology.

The existing studies on the incidence of ME/CFS often have major methodological difficulties, including heterogeneous populations, inadequate control groups and difficulties in objectifying symptoms. The same applies to risk factors (e.g. pre-existing psychiatric disorders). These methodological difficulties are a challenge for the interpretation of the study data and future research.
To date, there is no scientifically proven effective treatment that targets the suspected biological mechanisms. As a result, there is a ‘proliferation’ of non-evidence-based treatment options, some of which have been refuted in terms of their presumed effectiveness (usually with self-payment by those affected).
As part of an objective approach, the DGN called for intensive research at an early stage. Scientific projects were launched from the ranks of German neurology, e.g. in the search for biomarkers (valid objective diagnostic criteria), effective treatments or an understanding of the disease mechanisms. In fact, ME/CFS research, especially in the context of the ‘post-COVID-19 state’, has been provided with relevant funding with strong political support, enabling further research.

The “Neuroimmunology” commission of the DGN focuses in particular on immunological mechanisms, such as autoantibodies, immune cells or inflammatory mechanisms. So far, even after intensive research efforts, no consistent and validated correlations have been identified in this area of research that would have led to new effective therapeutic approaches for ME/CFS. In view of the findings to date, it cannot currently be assumed that immunological factors play a decisive role in ME/CFS. The extent to which other, non-inflammatory factors may be relevant is the subject of current research.

However, future research approaches should not focus primarily on immunological explanations: diagnostic and therapeutic procedures from other areas of medicine, including the field of mental and psychosomatic illnesses and functional disorders, should also be included in order to do justice to the diversity of the clinical picture.

It is important to advise those affected that there are currently no drugs or other therapies specifically approved for the treatment of ME/CFS. Due to the lack of evidence-based, scientifically proven data, no non-authorised drug treatments can currently be recommended. However, interdisciplinary care services for people with severe ME/CFS are urgently needed. Not least to prevent suicidal thoughts caused by the often very distressing symptoms, psychiatric support is required.

https://www.dgn.org/artikel/zum-aktuellen-forschungsstand-bei-me-cfs

 

[Utsikt]

In the main symptom of post-exertional malaise (PEM), there are many findings on group differences between ME/CFS sufferers and healthy controls; however, the exact biological causes/mechanisms of the symptoms remain unclear.
It is a multifaceted symptom pattern that is difficult to localise and in some cases takes on forms that cannot be explained anatomically or physiologically. It overlaps with numerous disease phenomena from internal medicine, rheumatology, endocrinology, psychiatry, psychosomatics and infectiology.

I’d be very interested to hear which disease phenomena they believe PEM overlaps with.

And are they saying that the symptom pattern can’t currently be explained physiologically, or that we know it can’t be (and therefor has to be psychosomatic)?

The existing studies on the incidence of ME/CFS often have major methodological difficulties, including heterogeneous populations, inadequate control groups and difficulties in objectifying symptoms. The same applies to risk factors (e.g. pre-existing psychiatric disorders). These methodological difficulties are a challenge for the interpretation of the study data and future research.

Why would control groups be needed for studies of the prevalence?

In view of the findings to date, it cannot currently be assumed that immunological factors play a decisive role in ME/CFS. The extent to which other, non-inflammatory factors may be relevant is the subject of current research.

So immunology = inflammation in their view?

However, future research approaches should not focus primarily on immunological explanations: diagnostic and therapeutic procedures from other areas of medicine, including the field of mental and psychosomatic illnesses and functional disorders, should also be included in order to do justice to the diversity of the clinical picture.

Why on earth would you call upon more research from the people that are almost exclusively unable to do anything right? (psychosomatics, functional)

However, interdisciplinary care services for people with severe ME/CFS are urgently needed. Not least to prevent suicidal thoughts caused by the often very distressing symptoms, psychiatric support is required.

So the suicides happened due to the lack of psychiatric support? You can’t think of any other reasons?

Aside from the lack of replicated differences, almost the only thing they got right is that the old name is wrong, even though they didn’t make any comments about how inappropriate CFS is as a name. They presumably missed JE’s paper on the concept of «ME/CFS».

 

[Sean]

However, future research approaches should not focus primarily on immunological explanations: diagnostic and therapeutic procedures from other areas of medicine, including the field of mental and psychosomatic illnesses and functional disorders, should also be included in order to do justice to the diversity of the clinical picture.

Yeah, that's what we need. More mental health/psychosomatics/functional disorders. Just hasn't been enough of it.

Interesting that it is the only thing they specifically mention we need more of. Nothing else.

 

[EndME]

Why would control groups be needed for studies of the prevalence?

I can think of scenarios where prevalence estimates following infections have been done where adequate controls would have been useful, something similar probably applies to the studies we've seen looking at different symptoms.

I think this version is probably a mild version of what most neurologists think about ME/CFS.

 

[Utsikt]

I can think of scenarios where prevalence estimates following infections have been done where adequate controls would have been useful, something similar probably applies to the studies we've seen looking at different symptoms.

I think this version is probably a mild version of what most neurologists think about ME/CFS.

Are those studies on prevalence? To me, they are studies on the risks associated with infections.

 

[EndME]

Are those studies on prevalence? To me, they are studies on the risks associated with infections.

I don't know whether that really makes a difference, I think studies in Germany have been carried out that can roughly be described as "prevalence of ME/CFS following EBV infection" and something similar probably applies to Covid, which is probably the reason why the DGN wrote this in the first place.

 

[Utsikt]

I don't know whether that really makes a difference, I think studies in Germany have been carried out that can roughly be described as "prevalence of ME/CFS following EBV infection".

I guess you need controls to say if one type of infection has a higher risk of ME/CFS than something else, but you wouldn’t need controls to say that 0.5 % of those with symptomatic and confirmed EBV meet the ME/CFS criteria after two years.

 

[EndME]

I guess you need controls to say if one type of infection has a higher risk of ME/CFS than something else, but you wouldn’t need controls to say that 0.5 % of those with symptomatic and confirmed EBV meet the ME/CFS criteria after two years.

Yes, but you'd probably need controls to say anything meaningful and that's what matters. So I don't think the reference to controls is unjustified especially after what has been going on in the Covid literature.

 

[Utsikt]

Yes, but you'd probably need controls to say anything meaningful and that's what matters. So I don't think the reference to controls is unjustified especially after what has been going on in the Covid literature.

I mean, yes and no. Certain types of studies need controls, but not the ones about the general prevalence in a population. Then you just need a sufficiently representative sample of the population.

 

[EndME]

I mean, yes and no. Certain types of studies need controls, but not the ones about the general prevalence in a population. Then you just need a sufficiently representative sample of the population.

Yes, but I don't think they are just making general statements about prevalence of ME/CFS in the general population but just some fairly general statements overall. Had it not been for Covid they wouldn't have made any statement at all. And I guess even some of the general prevalence studies for ME/CFS suffer from a lack of controls (I think we've seen that ME/CFS is sometimes assessed as some form of answering the DSQ-PEM which might suffer from false positives etc). In any case I don't think we're going to get any further by discussing what we believe the DGN might be meaning.

 

[rvallee]

However, future research approaches should not focus primarily on immunological explanations: diagnostic and therapeutic procedures from other areas of medicine, including the field of mental and psychosomatic illnesses and functional disorders, should also be included in order to do justice to the diversity of the clinical picture.

Yes, Dr Magoo, those have definitely not been included so far. No one has ever looked into that, ever. They mention how bad the studies are, I guess all studies that don't find anything are bad, but completely overlook how completely incompetent the psychosomatic pseudo-research is. And this is what they end up recommending be tried all over again, for the very first time. What a freaking joke these people are. I've never seen such a complete lack of professionalism, they seem to take no pride whatsoever in delivering good outcomes.

Not least to prevent suicidal thoughts caused by the often very distressing symptoms, psychiatric support is required.

Clueless, as usual. They don't listen to a damn thing patients tell them. People with ME aren't suicidal because of the symptoms, we are because our whole lives are destroyed, we are constantly gaslighted by lazy jerks who lie and make stuff up about us, leaving with only existing, not able to live, because of the symptoms. It's as destructive as being unjustly imprisoned indefinitely, but they are completely obsessed with blaming anyone for their own failures. It's never their fault. No, never. It's always someone else's problem, because they can't take responsibility for anything.

And of course they mention how all the studies so far are bad, yet use the fact that nothing has been found in decades as evidence that there is nothing, because they are completely stuck in a loop of failure. How can bad, underfunded, constantly obstructed research produce results? It can't. This is why there is nothing at all, and all they can think of is more of the same. Horseshit. This is all complete horseshit.

 

[rvallee]

Also it's a small detail lost in all of this but can these jerks quit blaming us for the name already? As if it matters! We didn't come up with the stupid name! And chronic fatigue syndrome is an even worse name so look who's talking?

 

[Jesse]

Current statement by the German Neurological Society (translated to english):

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is currently receiving particular political and media attention. It is a complex chronic disease with a wide range of symptoms that is difficult to diagnose and treat due to the lack of disease markers or established treatments.

To date, experts have taken a mixed view of the disease: While ME/CFS is considered by some to be dramatically underdiagnosed or neglected, others question it as a primarily somatic disease. The topic is particularly relevant for neurology, as many sufferers seek advice here, and receives a high level of scientific attention at the DGN. From a neurological point of view, it is problematic that the term ‘encephalomyelitis’ postulates an inflammation of the brain and spinal cord, which is generally not detectable in ‘ME/CFS’. Since, in addition to the potential cure and alleviation of symptoms, the protection of sufferers is also at stake, a balanced and evidence-based approach should be taken in order to avoid supporting unscientific diagnostics and therapies that could jeopardise sufferers.

The most important arguments here are:

In the last five decades, it has not been possible to identify ME/CFS with biomarkers such as blood or cerebrospinal fluid tests or in brain imaging (especially MRI).

In the main symptom of post-exertional malaise (PEM), there are many findings on group differences between ME/CFS sufferers and healthy controls; however, the exact biological causes/mechanisms of the symptoms remain unclear.
It is a multifaceted symptom pattern that is difficult to localise and in some cases takes on forms that cannot be explained anatomically or physiologically. It overlaps with numerous disease phenomena from internal medicine, rheumatology, endocrinology, psychiatry, psychosomatics and infectiology.

The existing studies on the incidence of ME/CFS often have major methodological difficulties, including heterogeneous populations, inadequate control groups and difficulties in objectifying symptoms. The same applies to risk factors (e.g. pre-existing psychiatric disorders). These methodological difficulties are a challenge for the interpretation of the study data and future research.
To date, there is no scientifically proven effective treatment that targets the suspected biological mechanisms. As a result, there is a ‘proliferation’ of non-evidence-based treatment options, some of which have been refuted in terms of their presumed effectiveness (usually with self-payment by those affected).
As part of an objective approach, the DGN called for intensive research at an early stage. Scientific projects were launched from the ranks of German neurology, e.g. in the search for biomarkers (valid objective diagnostic criteria), effective treatments or an understanding of the disease mechanisms. In fact, ME/CFS research, especially in the context of the ‘post-COVID-19 state’, has been provided with relevant funding with strong political support, enabling further research.

The “Neuroimmunology” commission of the DGN focuses in particular on immunological mechanisms, such as autoantibodies, immune cells or inflammatory mechanisms. So far, even after intensive research efforts, no consistent and validated correlations have been identified in this area of research that would have led to new effective therapeutic approaches for ME/CFS. In view of the findings to date, it cannot currently be assumed that immunological factors play a decisive role in ME/CFS. The extent to which other, non-inflammatory factors may be relevant is the subject of current research.

However, future research approaches should not focus primarily on immunological explanations: diagnostic and therapeutic procedures from other areas of medicine, including the field of mental and psychosomatic illnesses and functional disorders, should also be included in order to do justice to the diversity of the clinical picture.

It is important to advise those affected that there are currently no drugs or other therapies specifically approved for the treatment of ME/CFS. Due to the lack of evidence-based, scientifically proven data, no non-authorised drug treatments can currently be recommended. However, interdisciplinary care services for people with severe ME/CFS are urgently needed. Not least to prevent suicidal thoughts caused by the often very distressing symptoms, psychiatric support is required.

https://www.dgn.org/artikel/zum-aktuellen-forschungsstand-bei-me-cfs

They actually make some pretty accurate statements but then draw the complete wrong conclusions.

 

[Jesse]

From @Chandelier ’s post

“However, this is “not even close to the scale needed for therapy research,” he said. “We would need to invest at least one billion euros,” Lauterbach stated.”

EDIT: wait no he’s the former health minister. not the current one…

Yeah that's a lot easier to say as a former health minister, rather than as a current one. Still, it's hopeful and exactly the kind of language I missed in the UK delivery plan.