Why ME/CFS and Long COVID Activism in Germany Has Been Relatively Successful - blog, 2026, Strottman

[rvallee]

Pretty much everything I see out of Germany as far as what health care people are getting, nothing has changed, and so about the only measure of success here might be the decade project funding and the nice-sounding words that accompany it, but by this measure NIH RECOVER was far more successful, even though so far it's been a total bust.

The patient communities do seem to have a particularly well-organized structure and support, that I will say, but it translating into success is far from guaranteed, it looks similar to where the UK before everything was derailed in secret behind closed doors.

So I guess people are measuring this by their hope of getting results out of this program, but it's way too early to cash those chips, the whole project may get squandered on useless junk just as well as what the NIH has done. There seems to be about as much enthusiasm and pushback behind the scenes, and the whole thing could be cancelled next year following organized pressure from physicians. I pretty much expect the entire system of medicine, the associations, the schools, the journals, and so on, to be firmly against it, no matter what they say in public. This pattern has never once failed.

 

[Grigor]

My guess is that it mainly started with Scheibenbogen diagnosing patients with ME/CFS without any psychobabble. This created a group of patients who likely felt less shame or stigma from this diagnosis and were willing to advocate for it. I see the many press articles and demonstrations as a consequence of that.

In my view this is probably the main reason. Scheibenbogen is also very media savvy. Another strength of this group is that they communicate clearly about what they are studying. Instead of referring only to Long Covid, they explicitly include "post-covid-ME/cfs". This improves visibility and awareness for ME. Making that constant connection has really been helpful. Scheibenbogen also has had a good connection to the minister of health Karl Lauterbach who's also a MD and scientist, so she is effective at networking.

Reducing shame and having a prominent researcher publicly support patients makes it definitely easier for people to speak up. The number of street protests in Germany has been far higher than in neighboring countries. In the Netherlands we had only one protest, and that was at the end of last year. In Germany there have been many each year from the very start of the pandemic. I do not know of any other country with that level of activity. I'd say well done Germany!