News from Germany

TiredSam said:
Oh go on then, here's the middle bit:

Doctors' Advice:
Continue normal activities as much as possible
NO increased bed rest
Avoid extreme exertion, tailor your activities to your ability
Learn from short-term setbacks
Accept limitations temporarily

So you can see this waffle can mean anything to anyone, and with hindsight be interpreted to blame the patient of give credit to the doctor as desired.
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Yep. It is inconsistent nonsense, that places patients in a very nasty double-bind.
 
There was a presentation by a German doctor called Andreas Stengel from the University of Tübingen at the international long covid conference of the Hungarian Academy of Sciences. He is very definitely a BPS proponent. I wrote a very short summary and you can also watch the video there if interested. I really don't know if he is well-known in ME/CFS circles in Germany or not but here is the post about this: News from the Visegrád Countries - Czech Republic, Poland, Slovakia and Hungary
 
For media coverage of ME awareness day, statements of solidarity etc see:

https://twitter.com/dg_mecfs

Too unwell at the moment to follow the news and Twitter statements. There is also a video being shared on Twitter by some newspapers' and other prominent Twitter handles but but haven't been able to watch yet:

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Only skimmed this blog article on a political blog which I thought was quite good:

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Thank you everyone who shares good information about ME/CFS today.
 
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Wyva said:
There was a presentation by a German doctor called Andreas Stengel from the University of Tübingen at the international long covid conference of the Hungarian Academy of Sciences
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Never heard of him.

Hutan said:
Recommendation for standardized medical care for children and adolescents with long COVID [German]. Statement of a ..., 2022, Töpfner et al

Looks like influential guidance on the management of Long Covid in young people. It will be interesting to hear what our German members make of it.
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Had a look but too much other things ATM that want to be read and reacted to so hope someone else will be able to summarize or translate bits of it.

At a first glance, I think it isn't as bad as the English translation of the abstract might suggest.
 
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https://www.s4me.info/threads/news-from-germany.11006/page-9

On the German government's announcement to allocate 5 mio. € to clinical treatment trials for ME/CFS and Long Covid --

ME/CFS Skeptic said:
Wonderful news
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Agree that the willingness to fund research into ME/CFS is wonderful news. I think that new awareness is mainly thanks to the work of the few German ME patient organizations, all voluntary work, and the DG's collaboration with Prof. Scheibenbogen (Charité) and now also with the new Long Covid organizations.

I just hope that the money will be spent on sound research. I'm afraid that BerlinCure's drug (see thread here and updates here ) and other research into ME/CFS that I'm aware of happening in Germany isn't very promising with regard to treatments.

I think more basic research is needed before studying treatments for which there is no good evidence suggesting that and how they could work. From the discussions in the forum, I think smart symptom monitoring and replication studies (on pathophysiology and biomarkers, in particular brain imaging) could make more sense, if based on a much more rigorous review of the current evidence.

Also maybe more international collaboration might be helpful?
 
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Twitter bio said:
The German Society for Medical Rehabilitation eV is the umbrella organization for medical rehabilitation. The press office tweets here.
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Tweet said:
Post and long-COVID sufferers need professional rehabilitation treatments! The World Health Organization currently assumes that every tenth person suffers from long-term consequences after a corona infection.
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It is BOOM time in the business of rehabilitation. It's really all about the business, an easy stream of no effort work where no one has to think beyond executing a script, there is no accountability or oversight and results don't even matter.

I see again just how thoroughly silent the vast majority of patients who value how vital the biopsychosocial model is. It really is entirely silent. Meanwhile the small vocal minority is, well, vocal and, somehow, being a majority. How odd.

Snark aside, the comments in response tell a very different story, the stark difference between the current model of strictly supply-side healthcare, which completely overlooks demand/need and isn't bothered by such things as outcomes and results, or even pertinence. Truly the era of patient-centered medicine... :rolleyes:
 
Vice-president of the German parliament:
We know far too little about #MECFS . In a moving conversation, those affected told me how much #MECFS restricts them and what is lacking in care and research. Thanks to @pausedME it's now available as a podcast.
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In order to find out more about #MECFS and also #LongCovid , we have made €10 million available in the federal budget for research into both diseases over the next two years. A first important step.
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I don't know if any German long haulers find their way here but just in case:
The study is intended to help map the consequences of #longcovid on work ability and participation. It's about the economic consequences of the #postcovid syndrome. These affect us all. People without long COVID are also expressly encouraged to take part in the survey.
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If anyone wants pitch in and explain to the German health minister that funding clinics is useless until research pays off enough to actually enable such clinics to provide useful care. Meanwhile everything should be all about research research and more research. If those specialists existed it would simply happen, but they don't exist because of decades of denial that has so far held up despite the giant smoking canon. The refusal to commit to any meaningful research is an incredible display of fanaticism, literally rejecting reality and substituting their own.

In his first tweet above he does talk about research but it hasn't happened yet so I don't know what he's talking about then. If the medical profession is refusing, privately simply saying no and that's final, then that's what leadership is all about. It's not going to happen on its own.
Just replied directly, see message. LC centers with interdisciplinary experts on ME/CFS, POTS and BF are being set up across Germany. A law is in preparation. I fight against the epidemic with IfSG and a 7-point program
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I'm not sure if it's just a general consequence of politicians promising things that they don't plan to deliver, but it seems common for politicians to make statements about increasing funding/taking action on ME/CFS, and then it going nowhere. It could be that there's some behind the scenes pressure from medical organisations or people in bureaucracies who don't want to give legitimacy to ME/CFS by giving it funding (which is an opinion that's sometimes expressed openly by some people).
 
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