News from Germany

I'm able to translate some messages to German if you forward them to me

 

Lovely! I just saw that there's a new patient organisation in Germany called StartaMEvolution. They appear to be so new that not much information is available about them at this point in time. The call themselves "SAME" which I have already once misread as "S4ME".
https://www.startamevolution.org/
www.twitter.com/a_MEvolution
https://www.instagram.com/startamevolution/

A translated instagram post reads
"We are SAME and we are a motivated and dedicated team of ME/CFS sufferers trying to change the world "from the bedside". We campaign for more recognition, visibility and research of ME/CFS.

What is ME/CFS and why does something urgently need to change?

ME/CFS is a severe neuroimmunological disease that often leads to a high degree of physical disability and leaves 60% of those affected unable to work. According to current estimates, 600,000 - 800,000 people in Germany are affected by the disease - that is around three times as many as are affected by multiple sclerosis.

Despite these figures, ME/CFS remains largely invisible in the public eye and among doctors. The World Health Organisation classified ME/CFS as a neurological disease as early as 1969, and there is now sufficient evidence for a physical cause. Nevertheless, the disease is often wrongly dismissed as a psychosomatic condition.

The very name of the disease leads to psychologisation and stigmatisation. CFS stands for chronic fatigue syndrome, which is usually translated as exhaustion or tiredness. However, chronic fatigue syndrome or exhaustion syndrome are very trivialising terms and do not do justice to the severity of the illness.

ME/CFS is much more than just fatigue."

 

This has to be the weirdest announcement of funding ever. They are talking about announcing funding, but not actually talking about how half of the useful funding was already spent a long time ago in 2021, 2022 and 2023. Politics and political headlines I guess...

A good summary on the funding can be found here: https://longcoviddeutschland.org/haushalt-2024/.

Short summary: For the whole 5 year span of 2024-2029 there will be a total of €23 million for biomedical research into LC/ME/CFS (i.e. 5.8 million per year for LC combined with ME/CFS).

As such the government parties seem to have confirmed that they will breaching the coalition agreement in which certain promises were made w.r.t. ME/CFS.

 

From: Dr. Marc-Alexander Fluks


The German government has created an English web-page on post-corona therapy (including ME/CFS),
BMG Long COVID initiative (BMG: Federal German Ministry of Health),
https://www.bmg-longcovid.de/en

Press release (Google translation from German to English),

https://www-bundesgesundheitsminist...-12-09-23?_x_tr_sl=de&_x_tr_tl=en&_x_tr_hl=en

 

Not particularly impressive.

None of those are valid treatments, it's the same old nonsense in disguise yet again. The link to the "What about GET and ME/CFS?" doesn't have an entry.

 

To be fair it may depend on what components of Long Covid an individual has, for example someone who experienced lung damage at the acute phase may benefit from traditional relevant rehabilitation, though I doubt there is a lot of research evidence yet, however anything not starting with a strong warning about PEM is downright dangerous.

 

But what is traditional relevant rehabilitation?
I was never taught that there was any evidence base for rehab after lung damage.
I did a brief training in rehabilitation and there did not appear to be any evidence base to anything, just blind faith in exercising.

 

Twitter thread from journalist Martin Rücker on the recent German Long Covid congress. To me this marks the smallest bit of progress that is possible, the kind of leap forward that medicine should have been able to do by the end of the first year even in the worst case. The kind that any group of professionals is expected to do. It's progress nonetheless, but at a truly mediocre pace.

It's basically not quite at the point where the Long Covid community was 3 months in, and not even half-way to what the ME community has been saying for decades, pretty much what the average patient can figure out in a month. So basically the equivalent of having a giant mechanical digger and hundreds of workers having managed to dig a smaller hole in 3 years than 2 kids with a small shovel can do in a day. But, hey, progress!

Nitter link because it works better: https://nitter.net/martinruecker/status/1728490304909488618

Some excerpts:

(Fortunate translation of violence here)

 

Extend this to every disease and be done with the concept entirely once and for all please. Getting beyond annoyed that this has to be done for every single &@&#& disease at a time. The consequence is always that real research is delayed as @rvallee has laid out in his post and that patients suffering is extended. How many times does this have to happen for medicine as a whole to say; maybe we should assume we're not looking hard enough if we aren't finding anything.

 

Why are they still so hellbent on pushing an exertion-based therapy model onto patients that are barely able to reach appointments, let alone use shared bedrooms, without pushing their limits?

The best place to 'learn' pacing (i.e. to not push your boundaries) is in the confort of your own home, where you don't have someone looking over your shoulders all the time to make sure you're not slacking off.

 

This article about ME from Frankfurter Allgemeine is getting praise on X. I couldn't google translate it, but here is link to the German version:

Frankfurter Allgemeine Jonas brauch 20 Stunden Schlaf, Jeden Tag

 

It's a very gritty story but one that doesn't reach the public often enough. So some caution before reading. Not able to do a recap now, but the kid was treated abhorrently by a host of people.