News from Germany

Bumping any offers to help contact? Translate a couple of paragraphs?
NelliePledge said:
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:
Click to expand...
 
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.
 
Not particularly impressive.
At present, various treatment approaches are used in Long COVID. These include:
  • a breathing therapy, for example, for treating shortness of breath,
  • a logaoedic treatment, which can be helpful in dealing with problems in swallowing and speech,
  • a sports therapy to train capacity and rebuild physical endurance (Attention: In case of a stress intolerance, the symptoms can become intensified by physical activity. For this purpose, also read the question “What about graded exercise therapy and ME/CFS?”),
  • a physiotherapy or remedial gymnastics, which is useful in severely limited mobility,
  • a psychotherapeutic or supplementary psychiatric treatment, which can support in psychological problems,
  • regular check-ups to monitor the symptoms over time and adapt the treatment methods,
  • various rehab offers for long haulers.
Click to expand...
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.
 
rvallee said:
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.
Click to expand...

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.
 
Peter Trewhitt said:
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,
Click to expand...

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.
 
At present, various treatment approaches are used in Long COVID. These include:
  • a breathing therapy, for example, for treating shortness of breath,
  • a logaoedic treatment, which can be helpful in dealing with problems in swallowing and speech,
  • a sports therapy to train capacity and rebuild physical endurance (Attention: In case of a stress intolerance, the symptoms can become intensified by physical activity. For this purpose, also read the question “What about graded exercise therapy and ME/CFS?”),
  • a physiotherapy or remedial gymnastics, which is useful in severely limited mobility,
  • a psychotherapeutic or supplementary psychiatric treatment, which can support in psychological problems,
  • regular check-ups to monitor the symptoms over time and adapt the treatment methods,
  • various rehab offers for long haulers.
Click to expand...
The site seems to try to dodge commitment and controversy by mostly having a whole lot of people present a whole lot of opinions. Even the list above is just saying that various treatment approaches are used, which is true, but it doesn't make the treatments helpful. I guess it's the translation, but the thought of remedial gymnastics had me snorting a bit. And 'various rehab offers for long haulers' is permissively vague.

I struggled to find any clear recommendation. I did find a graphic summary
Treatment approaches (selection) for Long COVID
Screen Shot 2023-11-19 at 1.45.11 pm.png
which is dispiriting in its recommendations of exercise in various forms, its vagueness and its lack of a warning about PEM.

Why people think a picture of a smiling mouth makes a recommendation for 'speech therapy for swallowing and speaking difficulties' more comprehensible, I do not know. (and how big of a problem are speaking difficulties in Long covid really? (genuine question)). How does a picture of a building with a circle around it with arrows to indicate the circle goes around clockwise make 'Rehab services' easier to understand? Is it supposed to suggest that rehab services involves an endless cycle of visiting?

Screen Shot 2023-11-19 at 1.56.13 pm.png

Whatever, I'm just entertaining myself with nitpicking. Basically they've got nothing. But they still really really hope that if people with Long Covid could just get up off the couch and do a bit of exercise, they'd come right.
 
Last edited:
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
The #LongCovidCongress in Jena with >3000 participants (on site and online) and >60 scientific lectures is over. My impressions in a long (thread)
Click to expand...
Some excerpts:
The number of scientists and doctors who are working intensively on #LongCovid #MECFS and #PostVac seems to be increasing significantly, but the current knowledge is far from being widely adopted in the care structures.
Click to expand...
Most speakers emphasized the somatic mechanisms and secondary psychological consequences more clearly than at the congress a year ago. Of course, this is also due, but by no means only, to the selection of speakers.
Click to expand...
At times the same speakers expressed themselves more explicitly than last time, and voices from different disciplines were also added. PCS is something other than a somatization disorder, said psychosomatician Volker Köllner, for example.
Click to expand...
Uta Behrend pushed for children to be cared for more quickly than before so that their future is not at risk. This is especially true for the estimated up to 90,000 children with #MECFS Behrend emphasized: “We can do a lot.” Chronic does not mean lifelong.
Click to expand...
Keywords were pacing, psychosocial care, drug and non-drug symptom relief, avatar and home teaching, telemedicine.
Click to expand...
What has been recognized as a problem is that a proportion of long-term PC sufferers somehow "function" at work, but have to cut off all leisure activities and are unable to recover.
Click to expand...
The topic of rehab: There has been a lot of data showing that rehab helps many long COVID patients. The LongCovid Germany survey with reports of deterioration in PEM was also an issue. Volker Köllner assumed that deterioration can be avoided even in moderately severely affected PCS through flexible, individual adaptation of the program. It is completely unclear how many clinics can do this. The topic of rehabilitation at PEM was viewed differently.
Click to expand...
Rehab for children: Dirk Heinicke (chief physician Bavaria Rehaklinik in Kreischa) clearly admitted that many children's rehabs had initially declared standard programs as post-Covid rehab ("old wine in new bottles") - with the result: “We produced PEMs in one go.” There is now a rehabilitation concept in Kreischa for 10 to 20-year-olds with single rooms and therapies directly in the room. The main rehabilitation goal: to familiarize themselves with pacing + apply it directly in rehabilitation.
Click to expand...
So the priority is not to achieve improvement through violence. The clinic also tries to provide information to schools about the disease.
Click to expand...
(Fortunate translation of violence here)
A new field of research is the stigmatization of post-Covid sufferers. Georg Schomerus (UK Leipzig) sees the criteria of stigmatization as being met, especially through psychologization and devaluation. Stigmatization through others (as examples he gave quotes from Prof. Kleinschnitz (FAZ interview) and Werner Bartens (SZ commentary)) also lead to self-stigmatization and reduced self-esteem.
Click to expand...
The assessment of neurocognitive symptoms such as “brain fog” is becoming more similar. Angelika Thöne-Otto and Volker Köllner described it as a separate phenomenon/expression of brain dysfunction, not as a result of fatigue or expression of co-morbidity depression.
Click to expand...
There was agreement that there are practically no offers for those severely affected by #MECFS . This gap in supply has been complained about, and there are no solutions beyond model projects.
Click to expand...
The panel discussion with MPs Ullmann (FDP), Rudolph (SPD) and Borchardt (CDU) was primarily about participation. It was complained that almost all structures are not suitable for those affected by PC, especially for those severely affected:
Click to expand...
Schools are unable to adapt to sick children and provide education despite persistent PC symptoms. Reintegration models are too rigid and often overwhelming. There is no part-time sick leave.
Click to expand...
Rehabilitation concepts are not flexible enough. Care structures are particularly unsuitable for those severely affected. The MPs unanimously recognized this. But even though all of this has been more or less known for at least 2 years.
Click to expand...
It became clear during the discussion: Nobody has yet addressed these structures. The answers ranged from evasive to helpless. MP Ullmann ➡ evaluated the coalition agreement's promise to create a network of centers for PCS and MECFS primarily as a task for the healthcare system, not as a political mandate to act. Conclusion: Problems have been described and regretted, solutions are not in sight. Claudia Ellert called for a rethink
Click to expand...
Pharmaceutical industry: This time there were sponsors and an industrial exhibition. My impression: Very difficult. There was Big Pharma like Pfizer - but they didn't present anything that offered approaches for post-Covid.
Click to expand...
 
A new field of research is the stigmatization of post-Covid sufferers. Georg Schomerus (UK Leipzig) sees the criteria of stigmatization as being met, especially through psychologization and devaluation. Stigmatization through others (as examples he gave quotes from Prof. Kleinschnitz (FAZ interview) and Werner Bartens (SZ commentary)) also lead to self-stigmatization and reduced self-esteem.
Click to expand...

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.
 
There is now a rehabilitation concept in Kreischa for 10 to 20-year-olds with single rooms and therapies directly in the room. The main rehabilitation goal: to familiarize themselves with pacing + apply it directly in rehabilitation.
Click to expand...
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.
 
I still, after all these years, struggle with wrapping my head around the level of sheer arrogance, delusion, dishonesty, and callousness required to believe that they understand our situation and how to manage it, and have the right to force it upon us, when all the evidence clearly says otherwise, in 50 foot high flashing neon lights.

If that is not cult behaviour, then nothing is.
 
Kalliope said:
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
Click to expand...

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.
 
You must log in or register to reply here.
Back
Top Bottom