News from Germany

rvallee · Feb 24, 2023

TiredSam said: ↑

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"
Click to expand...

Of course. The overlap between this ideology and grievances/revanchist politics is a simple circle. It was just a matter of time before they used cancel culture. Frankly I'm surprise it took this long. Sharpe basically said this without using the term, but the roots are the exact same.

And this is despite being propped up for decades while accomplishing nothing because it's a traditional system. They demand the power of kings and the accountability of a toddler. Same underlying thinking as authoritarians.

The corner they belong to is the trash, so their current corner is way too nice for what they deserve. They destroyed millions of lives, frankly for many it's prison that is deserved. Especially since they want even more. They simply don't care about the patients, this is about coercion and control. And their self-interest, of course.

Sean · Feb 25, 2023

Yes, the poor darlings are being so cancelled that one of their most senior fellow travelers is now a commissioner for the NHS. So cancelled that they continue to occupy influential senior positions on the boards of peer-review journals, in medical education, clinical guidelines, and public and private policy advice, and have a hotline to the mainstream media to help spread their crap and protect them from being exposed and held to account for their actions.

So cancelled that they still have the raw political power to, so far, largely ignore any attempts to meaningfully restrain, reform, or remove them and their influence, beyond making a few token tweaks to their sales pitch, while publicly indulging in some nasty temper tantrums and victim smearing as payback for having to do even that much.

I've never seen such cancelling. Must be time for another round of those modest bravery awards they give each other.

Besides, shit medicine should be cancelled, and very hard.

Jaybee00 · Feb 25, 2023

https://twitter.com/user/status/1629465043279527936

Pustekuchen · Feb 25, 2023

The German ME/CFS Society and Long COVID Germany published a detailed guidance for projects on research and care for ME/CFS and post-COVID syndrome (announcement and PDF, both in German).

English Article about it: https://mecfs-research.org/en/leitf...e-cfs-und-post-covid-syndrom-veroeffentlicht/

In the research section they e.g. call for accurate clinical phenotyping of subgroups, patient-led research and objective/quantative primary outcome measures (still taking into account PROMs) amongst many other things.

Sean · Feb 25, 2023

Sean said: ↑

while publicly indulging in some nasty temper tantrums and victim smearing as payback for having to do even that much.
Click to expand...

Less than 24 hours later.

Jaybee00 · Mar 3, 2023

https://twitter.com/user/status/1631576651363393538

Solstice · Mar 3, 2023

If I'm reading correctly the minister is only sanctioning 15 out of 73 research applications. Total worth 12,5 miljoen. Wahnsin.

rvallee · Apr 1, 2023

In response to the article "Long Covid and the Psycho Corner" by Kleinschnitz et al. I have prepared a letter to the editor for the medical journal, but it would have more weight with several signatures. Does anyone want me to put his/her name underneath? If yes, please DM.
Click to expand...

https://twitter.com/user/status/1642218548062740480

SNT Gatchaman · Apr 1, 2023

Ladies and Gentlemen
Your article "Long Covid and the Psycho-Ecke" in DÀ 13/2023 clearly shows the core of the conflict about the classification of the causes of Long Covid between body and soul: Doctors too often talk about their patients instead of talking to them. The authors apparently have problems empathizing with the mentality of those affected, they lack the background experience of their patients. Therefore, the article ignores the reality of life of those affected in many places and contains some misunderstandings that I would like to clear up here.

The overwhelming majority of long-Covid sufferers known to us neither doubt the interactions between body and soul, nor do they fundamentally reject psychotherapy. On the contrary, many of those affected accepted the treatment concepts of their doctors, underwent psychotherapy and took part in rehabilitation measures. However, many then had to experience that the psychotherapy did not help, while their condition often drastically worsened as a result of the rehabilitation measures, even more so they ended up in a wheelchair and confined to bed. But then what is the meaning and purpose of your article, what do the authors want to offer such patients with their view restricted to psychosomatics? It is totally inappropriate for your authors to accuse these patients of denial or to require them to re-expose themselves to treatments that have so harmed them in the past and which they are often no longer physically able to receive. These often seriously ill people rightly resist being pushed onto a psychosomatic sidetrack, which turns out to be a dead end for most of them. On the other hand, several studies have shown significant changes in the metabolism of such patients. So it makes sense to get to the bottom of these phenomena instead of stubbornly insisting on psychosomatic therapy concepts that have repeatedly failed.

Another large group of long-Covid sufferers said they were mentally healthy at the time of their illness, had no significant psychological stressors, and many led a fulfilling, active life. On what grounds do the authors want to attribute mental disorders to them in a general way and without considering the individual person? If these affected people refuse psychotherapy, this does not mean that they are fundamentally opposed to psychotherapy. Only, unlike your authors, they know their life situation and consider psychological causes to be extremely implausible. If they do allow themselves to be persuaded to see psychotherapists, they often agree and send them back to their treating physicians for a somatic evaluation.

The authors also overlook the damage that unwarranted psychologizations of somatic diseases have repeatedly done in the past. In the case of a number of diseases that later turned out to be primarily somatic, doctors first saw the psyche in the foreground and thus withheld effective treatments from those affected, such as asthma, stomach ulcers or the Gulf War syndrome. Your article reports "many question marks", for example regarding the role of autoantibodies. In view of the high number of cases and the sometimes considerable disability of those affected, it seems sensible to invest more in research instead of repeating the same mistake with every unexplored disease. Doctors and patients should work together to achieve this.

The article contains numerous other distortions and unscientific arguments, which we do not want to go into detail here for reasons of space. An example is the reference to the individual case of the doctor Prof. Paul Garner and his supposed path to healing. If the authors grant such individual cases considerable probative value, they would have to concede the same probative value to successful blood washing instead of explaining it by the placebo effect, as one of your authors did in the Hirschhausen documentation "Pandemic of the Untreated". The blanket discrediting of those who think differently and the misleading presentation of their point of view by the authors is not conducive to a constructive solution to the problem.

In the long term, the solution must be that doctors and patients do not work against each other, but rather cooperate with each other. While the doctors contribute their specialist knowledge, the patients are experts on their life situation and their illness symptoms and have often developed a good intuition for their illness over the course of months or years. So let's defeat the disease together instead of wasting our energy in internal trench warfare.
Best regards
Christian Zacharias, Hamburg
Erika Mustermann, Vienna

Hutan · Apr 1, 2023

That's a great letter.

TiredSam · Apr 13, 2023

ME/CFS: New training series for affected children and young people as part of a study

https://nachrichten.idw-online.de/2...gendliche-im-rahmen-einer-studie?groupcolor=3

Google translate

ME/CFS: New training series for affected children and young people as part of a study

https://nachrichten-idw--online-de....l=auto&_x_tr_tl=en&_x_tr_hl=de&_x_tr_pto=wapp

Website at Würzburg University -- sources have UK NICE guidance at first place.

https://www.ukw.de/behandlungszentr...ozialpaediatrisches-zentrum/schulungen/mecfs/

Google translate:

https://www-ukw-de.translate.goog/b..._sl=de&_x_tr_tl=en&_x_tr_hl=de&_x_tr_pto=wapp

Trish · Apr 13, 2023

This looks promising:

Treatment of ME/CFS
Based on the comprehensive findings, we develop a tailor-made treatment concept. The treatment is mainly symptom-oriented.preventiveSelf-management, the so-called pacing, is essential for avoiding PEM or crashes. A diary can be helpful. In addition, understanding psychosocial support and close monitoring by a doctor are recommended. If necessary, suitable certificates, for example for school, are issued and aids are prescribed.
Click to expand...

Sly Saint · Apr 20, 2023

German Bundestag – Experts call for help for patients with ME/CFS

Berlin: (hib/PK) Physicians and professional associations are calling for targeted help for patients suffering from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Specialist care and increased research would be needed, experts said in a hearing by the Health Committee on an application (20/4886) of the Union faction. The experts expressed themselves in the hearing on Wednesday and in written statements.

The motion states that ME/CFS is a serious, multisystem disorder that causes fatigue and post-exertional malaise (PEM). The MPs are calling for immediate financial and structural support for the establishment of the competence centers and interdisciplinary outpatient clinics for ME/CFS mentioned in the coalition agreement.

According to the German Society for ME/CFS, the disease has been “marginalized or misclassified” since it was classified as a neurological condition by the World Health Organization (WHO) in 1969. ME/CFS has been “in the blind spot of the healthcare system” for decades. Investment in ME/CFS research has been neglected for decades.

The Long Covid Germany (LCD) initiative for those affected explained that ME/CFS often leads to a lifelong and high degree of physical disability. A subgroup of patients with post-Covid syndrome meet diagnostic criteria for ME/CFS at six months. Due to the ongoing infections with Sars-Cov-2, an increasing number of ME/CFS diseases in connection with Covid-19 can be assumed. Since ME/CFS can neither be cured nor treated causally, the disease is becoming an increasing cost factor for the health and social system.

The German Hospital Society (DKG) also spoke of a little-known, very serious illness. With a view to the connection between ME/CFS and post/long-Covid, the association noted that the suspicion of two underlying similar postviral infection syndromes with severe multi-system impact is almost inevitable.

According to the National Association of Statutory Health Insurance Physicians (KBV), the diagnosis of ME/CFS is difficult. There are no objective diagnostic tests to confirm the disease. Therefore, a complex, symptom-oriented, differential diagnostic clarification is almost always required, often as a diagnosis of exclusion.

Children and young people are also affected by Long-Covid and ME/CFS. The non-genesenkids parents’ initiative reported a steady increase in inquiries and requests to join. Parents and grandparents turned to the initiative because previously active and sporty children would no longer recover after a corona infection. Many parents are desperate because there is a lack of competent contact points for diagnostics, treatment options and understanding of the situation.

At the hearing, experts made it clear that early diagnosis is crucial to prevent possible further deterioration in patients’ health. Uta Behrends from the Technical University of Munich said that diagnosing children and young people is more complex than that for adults. It must be taken into account that affected children are in education and lose important time in their peer group. (pc)

Click to expand...

https://www.breakinglatest.news/hea...perts-call-for-help-for-patients-with-me-cfs/

Tom Kindlon · Apr 23, 2023

“German Bundestag – CDU/CSU presses for ME/#CFS progress”.

This gives more details than the English news report I saw on the detailed application before the health committee on April 19. Lots of suggestions for initiatives were mentioned.

https://www.meresearch.org.uk/german-bundestag-cdu-csu-presses-fro-me-cfs-progress/

https://twitter.com/user/status/1650195065715687430

Click to expand...

TiredSam · Apr 26, 2023

Sabine Hermisson auf Twitter: „Ich bin sehr gerührt: In Milas alter
Schule starteten Jugendliche mit dem IT-Lehrer das Projekt, ein
Kommunikationstool für sie zu entwickeln: Sie informierten sich
ausführlich zu #MECFS und programmierten ein Tablet so, dass Mila mit
dem Finger einzelne Buchstaben schreiben“ / Twitter

Translation:

Sabine Hermisson on Twitter: "I am very touched: In Mila's old
school, young people started a project with the IT teacher to develop a
communication tool for her: they informed themselves in detail about #MECFS and
programmed a tablet so that Mila could write individual
letters with her finger" / Twitter

https://twitter.com/user/status/1650791369483452416

Jaybee00 · May 7, 2023

https://twitter.com/user/status/1655230479719694338

Art Vandelay · May 8, 2023

Fans raising awareness at a German football game:

[translation of the banner is:
ME/CFS can affect anyone! Don’t let Sebastian and 300,000 other affected down! Awareness now!]

https://twitter.com/user/status/1655208255948308480

TiredSam · May 11, 2023

Martin Rücker auf Twitter: „Das Thema Hilfen für #MECFS-Betroffene ist
nun endgültig Gegenstand parteipolitischer Auseinandersetzungen. Das ist
nicht gut und der Sache nicht angemessen. Eine kurze Analyse, was
gestern im #Bundestag passiert ist und wie der Stand zu bewerten ist.
“ / Twitter

https://twitter.com/user/status/1656551762139004930

TiredSam · May 11, 2023

My best effort at a translation of that twitter thread:

Martin Rücker
The topic of aid for #MECFS sufferers is now finally the subject of party-political disputes. This is not good and not appropriate for this subject. A short analysis of what happened yesterday in the #Bundestag and how to evaluate the state of affairs.

Sepp Müller
The coalition parliamentary groups have just rejected our motion on #MECFS. I cannot put my incomprehension into words. This is about hundreds of thousands of affected people and you are doing party politics? @GrueneBundestag @fdpbt @spdbt We as @cducsubt continue to fight for those affected.

Martin Rücker

1. I find the fuss the opposition is making about the fact that their motion was rejected, a little artificial. This is parliamentary practice – which often does not do justice to the subject, but so far all government majorities have kept it that way. That is not however decisive.

2 The CDU/CSU has failed to recognize the issue and take action in its 16 years in government (partly including control of the Ministry of Health). Now, however, driving forces in the CDU/CSU have recognized - in my opinion sincerely - that there is a need for action.

3. had a conversation with @mueller_sepp a long time ago about this. My impression: even then, there were plenty of opportunities to criticise the traffic light [Coalition] / @Karl_Lauterbach strongly - for example, because promises of the Coalition agreement for #MECFS competence centers were never kept and nothing else happened either. However, the chance for a party-political advantage was not taken for a long time, because there was an attempt to come together intergroup. Whether the request for this before an agreement with traffic light [Coalition] factions was helpful? Difficult - but of course it is legitimate.

4 The application is not perfect and has some weaknesses (more on that in a moment), but picks up many important points from the point of view of those affected.

5 When now @stamm_fibich explains the refusal by the fact (https://stamm-fibich.de/persoenliche-erklaerung...) that the request addresses points which the Federal Government cannot regulate at all, then that is shabby. For example DMP [Disease Management Programme] (never mind the fact that it would last years and least help people): Yes, it is not the federal government that decides on new DMPs - but in the past DMPs were probably introduced by decision of the Bundestag. The mandate goes to the G-BA [Federal Joint Committee of German public health agencies], but initially was a parliamentary decision - could theoretically have been decided by the Bundestag for #MECFS.

6 Apart from vague announcements for supposedly planned budgets, the Minister of Health simply has nothing to show so far, and the BMBF [Federal Ministry of Education and Research] does not really have much to show either.

7. in view of the situation of those affected and the cross-party relevance of this issue, all of this would have been cause for the traffic light coalition and the opposition to sit down together across party lines and prepare a joint initiative. It is a real failure on the part of the coalition not to have done this, while it has so far failed to come up with anything concrete compared to the Union's (opposition’s) proposal (for all its weaknesses).

8 We can only hope that no new escalation will now enter into party-political quarrels, and that everyone will get their act together and examine what is possible together + concretely. The Bundestag must be able to deal with such an issue on a cross-factional basis.

Sly Saint · May 11, 2023

German Bundestag - Health Committee re-engages with ME/CFS - Breaking Latest News

Berlin: (hib/PK) The Health Committee has again dealt with the serious neurological disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). At the meeting on Wednesday, the parliamentary groups unanimously expressed their will to help those affected in their difficult situation as effectively as possible. More research funds and a better supply infrastructure should contribute to this.

A request from the Union faction (20/4886) on the subject was rejected by the majority of the traffic light coalition of SPD, Greens and FDP, in addition to the Union, the left and AfD also voted in favor. The application states that the supply situation for the people affected and their relatives is characterized by hopelessness and a lack of prospects. ME/CFS severely limits the quality of life of those affected. Patients often depend on care from relatives.

In the committee consultation, speakers from all parliamentary groups made it clear that further work must be done on concrete improvements in care. Speakers appreciated the application, which drew attention to the topic, as well as the expert hearing convened on April 19, which provided important information and highlighted the urgent need for action.

MPs pointed out that not only ME/CFS, but also other diseases that have been known for a long time, have received far too little attention in the past, including the gynecological disease endometriosis, on which there was also an expert hearing on March 29th.

Click to expand...

https://www.breakinglatest.news/health/german-bundestag-health-committee-re-engages-with-me-cfs/

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rvallee Senior Member (Voting Rights)

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