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

[OrganicChilli]

Blog by Timo Strottman

Part 1

Part 2

AI summary:

• Activists framed Long COVID not as a new illness but as part of a broader category of post-acute infection syndromes (PAIS), linking it with ME/CFS — helping patients unify rather than compete for attention.
• This shared framing meant many Long COVID patients joined existing ME/CFS groups and new inclusive initiatives, strengthening collective advocacy.
• Early recognition by patient communities — even before most doctors or policymakers acknowledged Long COVID — gave the movement momentum.
• Sustained media visibility was key: activists proactively shared local personal stories and reached out to journalists to raise awareness about systemic failures in care and recognition.
• Symbolic, visible protests (e.g., beds in front of parliament, body-bag actions) repeatedly broke into national news, forcing wider audiences to confront the realities of ME/CFS and Long COVID.
• Outreach extended to broader platforms — including science/media journalists, social media influencers, and football events — helping normalize the issue and apply political and public pressure.

 

[Andy]

I've not read either part but, given that many of the same things have been tried elsewhere, I think an important additional reason is that these efforts took place in a non-native English speaking country, where the narrative that everybody is individually responsible for themselves and that society owes you nothing has not taken hold to the same extent that it has in the UK and USA.

I'm not trying to denigrate the efforts of German advocates, or trying to say that Germany as a society is without its flaws, just that cultural differences are likely to explain the difference in success levels.

Mind you I obviously say that from a solely UK perspective, if there is anybody here who has experience of both cultures then it would be interesting to know if you think I'm right or wrong.

 

[Yann04]

Yes the list provided by the LLM summary IMO doesn’t include anything unique to Germany. Though perhaps Germanophone places have done it better.

What I noticed being different compared to say anglo places is that the proportion of ME/CFS coverage in the news / social media etc had a far higher percentage that is positive Bio/ serious. And a lot less Psycho/Individualising etc stuff.

Which brought a sort of political momentum, that “a lot of people are suffering and something needs to be done” vs even if there is a lot of coverage in the UK the political momentum lacks. As Andy said in the UK it’s not framed as much as a political problem but as something you need to find the right supplements or the right program.

 

[ME/CFS Science Blog]

I think an important additional reason is that these efforts took place in a non-native English speaking country, where the narrative that everybody is individually responsible for themselves and that society owes you nothing has not taken hold to the same extent that it has in the UK and USA.

Yet the UK and US have always been the countries that have done the most in recognising and studying ME/CFS so don't think this cultural aspect is an important factor in research and recognition of ME/CFS. The Netherlands very much follows this individualist and anglo-saxon mindset and does more research per capita on ME/CFS than any country in the world.

These countries still do far too little but do significantly more than France, Japan, Italy, Spain etc.

 

[ME/CFS Science Blog]

What I noticed being different compared to say anglo places is that the proportion of ME/CFS coverage in the news / social media etc had a far higher percentage that is positive Bio/ serious. And a lot less Psycho/Individualising etc stuff.

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.

Think that the patient organisations such as Deutsche Gesellschaft für ME/CFS and the ME/CFS Research Foundation also played it well be focusing on being professional and respectable, not just an advocacy group.

 

[Andy]

Yet the UK and US have always been the countries that have done the most in recognising and studying ME/CFS so don't think this cultural aspect is an important factor in research and recognition of ME/CFS. The Netherlands very much follows this individualist and anglo-saxon mindset and does more research per capita on ME/CFS than any country in the world.

These countries still do far too little but do significantly more than France, Japan, Italy, Spain etc.

Well, the blogs are talking about why activism efforts have been relatively successful in Germany, not why relatively so much research has happened on ME/CFS in the UK.

I would argue that in regard to the UK, it might well be the BPS cohorts attempts to specifically psychologise it, in order that it fit the individualistic paradigm here, that meant that awareness of ME/CFS has been at a higher level than elsewhere. In other countries there just seems to be either complete dismissal or disinterest of it as an issue, or it being largely subsumed into fibromyalgia or broad 'functional' constructs.

 

[Yann04]

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.

Agreed. I think that sort of critical mass is something that lacks in French, Spanish, Italian. Unlike northern europe or the German speaking world most people do not speak english so there needs to be a critical mass before it becomes a “thing”. Not enough people have been diagnosed and given a solidly Bio mindset for it to become “a thing” I think.

Think that the patient organisations such as Deutsche Gesellschaft für ME/CFS and the ME/CFS Research Foundation also played it well be focusing on being professional and respectable, not just an advocacy group.

I’m not sure how much this differs to the UK?
And there’s also a lot of grassroots stuff in Germany.

 

[ME/CFS Science Blog]

I’m not sure how much this differs to the UK?

I think that in the UK the problem was that some patient organisations sided with BPS researchers and this created internal division. In the US, there were ME/CFS advocacy calls where activists yelled at scientists.

Although Solve has the same professional and lobbying mindset, I think that the ME/CFS community in the US as a whole has been more focused on supporting questionable doctors and their (biological) theories on ME/CFS than in Germany.

The German ME/CFS community focused on supporting Scheibenbogen (and researchers connected to her) and because she is affiliated with the prestigious Charite hospital, it probably gave more credibility to the ME/CFS cause than doctors like Cheney in the US.

 

[ME/CFS Science Blog]

Don't want to go into political discussion but I suspect that that individualistic anglo-saxon mindset created a poor welfare system overall, not just for ME/CFS but for all disabilities. And because of this, ME/CFS patients have it particularly though in these countries, despite there being more recognition of and research on ME/CFS than elsewhere.

In European countries like Spain, Italy, Belgium, France the situation seems opposite: almost no real recognition of ME/CFS but better overall healthcare systems that often work regardless of the particular diagnosis. So ME/CFS patients there might get a different official diagnosis like fibromyalgia, postviral fatigue, chronic fatigue, depression or whatever, but still might get welfare support or disability payment that people in the US and UK might not get despite a correct ME/CFS diagnosis, etc.

Just speculating of course, but that would my guess.

 

[Jonathan Edwards]

I would argue that in regard to the UK, it might well be the BPS cohorts attempts to specifically psychologise it, in order that it fit the individualistic paradigm here, that meant that awareness of ME/CFS has been at a higher level than elsewhere. In other countries there just seems to be either complete dismissal or disinterest of it as an issue, or it being largely subsumed into fibromyalgia or broad 'functional' constructs.

Isn't this a rather psychologising analysis ?

 

[Jonathan Edwards]

In European countries like Spain, Italy, Belgium, France the situation seems opposite: almost no real recognition of ME/CFS but better overall healthcare systems that often work regardless of the particular diagnosis.

Could well be. But things ahve not always been as they are. I remember ten years ago a close Spanish friend (of 60 years standing) saying to me "Who would have thought the day would come when people in England would look to Spain as a place with cleaner toilets and a safer more effective healthcare system".

It probably has a lot to do with who Won the War but we might do well not to write a thousand page history of the Rise and all of Attitudes to ME/CFS.

 

[Utsikt]

Although Solve has the same professional and lobbying mindset, I think that the ME/CFS community in the US as a whole has been more focused on supporting questionable doctors and their (biological) theories on ME/CFS than in Germany.

The German ME/CFS community focused on supporting Scheibenbogen

She has had her fair share of questionable biological stuff, though.

I don’t think we should underestimate the informal power of the BPS proponents in certain countries. I’ve heard a few horror stories from Norway. They are not playing nice.

UK has its fair share of that as well.

RECOVER in the US was and is a disaster.

 

[ME/CFS Science Blog]

So ME/CFS patients there might get a different official diagnosis like fibromyalgia, postviral fatigue, chronic fatigue, depression or whatever, but still might get welfare support or disability payment that people in the US and UK might not get despite a correct ME/CFS diagnosis, etc.

I suspect this is another aspect that might significantly hamper advocacy: if patients get a different, related diagnosis to ME/CFS.

I saw this in Belgium where the ME/CFS community got torn apart when one popular doctor started diagnosing patients as having Chronic Lyme. In French speaking parts, ME/CFS patients are often grouped under fibromyalgia or spasmofilie. In Spain the diagnoses central sensitivity syndrome and multiple chemical sensitivity seem to be popular. In the US, POTS, hEDS and MCAS have risen in the last few years. Patients often prefer these because they point to biomedical abnormalities but it also splits the patient community.

Think this creates confusion and division that really hampers advocacy. Could be wrong but had the impression that Germany and Austria suffered less from this.

The blog also mentions that Long Covid and ME/CFS patients worked well together in Germany. This was also the case in the Netherlands. It could be that ME/CFS recognition and research got a boost from that. In other countries, there was more reluctancy to make the connection (with Long Covid patients trying to avoid the stigma of ME/CFS or believing in viral persistence causing a HIV-like disease, not ME/CFS).

 

[Rick Sanchez]

I remember doing some advocacy work some 8 years ago. Wrote to what seemed like the main German MECFS organisation at the time. They came off as extremely professional, was pretty much immediately impressed with them. In fact I had never interacted with an org this professional before. Which was weird because the org was in its infancy.

The German MECFS org Deutsche Gesellschaft seems extremely well run compared to other ME organisations. There is just a lot of luck and randomness to kind of stuff. Sometimes It`s just about the ´´right`` patients becoming ill, and becoming ill at the ´´right`` time. This isn`t to take anything away from the excellent work they have been doing. As someone else mentioned. Scheibenbogen diagnosing patients might have made a massive difference.

I am very grateful for (almost) all MECFS organisations. But the truth is that a lot of orgs are hampered by people being stuck in the past still wanting to waste time debating what real ´ME` is, and the orgs come off as cranks or conspiracy theorists when advocating because they will tell politicians ´´Oh yeah there is loads of stuff you can do to treat MECFS, ever heard about LDN? Ever heard about dumb supplements? Ever heard about an anti-viral that has never been proved to work in a placebo controlled study?``. How are these orgs, who waste their time still arguing about the Canadian Consensus Criteria, Ramsay Criteria and weird MECFS pet theories supposed to work with whatever Long Covid is?

Meanwhile it seems like the German org got off to a fresh start around a decade ago unencumbered by the past and have just been moving forward ever since. You didnt even have to fight a bunch of dumb GET experts entrenched in the health authorities like in the Netherlands, Scandinavia or the uk. Because they didnt exist. Then you have Scheibenbogen who of course has made the job easier, as well as German politician(s) who have gotten MECFS and or Long Covid. Add to this the German Federal Minister of Health Karl Lauterbach who has enthusiastically thrown himself into the fight for whatever reason.

Just lots of things gone right at the right time, where other countries has lots of things gone hopelessly wrong.

 

[Felis Catus]

There's also this whole wellness-yoga-mindfulness-coaching industry (industries?) in the UK and US. Some patients go from pre-illness wellness retreats straight into the hands of BPS folks when they get ill and the whole narrative makes sense to them. Some patients discover the wellness industry when they get ill and similarly get absorbed into psychobabble.

I don't know how strong that industry is across mainland Europe. In some countries it's not at all.
More importantly, how much do ill people utilise and rely on wellness coaches when they get ME/CFS or LC? Some people in the UK have build successful businesses on that which is not helpful when it comes to the patient cohesion and advocating for biomedical research.


Maybe Germans approach advocacy and healthcare issues like manufacturing, and focus primarily on efficient problem solving.

 

[Jonathan Edwards]

Reading the blog I am unclear as to what evidence there is to support any of it. It is just a claim. Is advocacy successful in Germany? What would that mean? Surely it would mean good research being funded or good health services. The main difference in health care systems I have noticed in Germany over the years is a relatively strong pseudoscientific streak being more mainstream - particularly in cardiology. Germany also went on using its own language journals, generally with poor quality material, much longer than other countries.

 

[NelliePledge]

My impression from what I’ve seen posted on the forum is that psychosomatic thinking has plenty of proponents in Germany in hospitals and research. it seems is a bit more blatant even having psychosomatic departments, than in the UK who are into euphemisms and hiding things behind Persistent Physical Symptoms, Medically Unexplained Symptoms etc. which makes it harder for advocacy groups to push back against and muddied waters leads to groups being drawn in to that agenda.

 

[Yann04]

As a very general and possibly quite oversimplified „anecdote“. Personally the sort of impression I‘ve gotten is that german advocacy felt as much on the offense as on the defense.

UK advocacy feels much much more on the defense. (Not to fault people in the UK at all. I would be/am on the defence as well.)

But I guess the conditions that made having a sort of constant offence possible existed in Germany. And that offensive built a momentum which led to a sort of political and societal shift.

 

[V.R.T.]

As a very general and possibly quite oversimplified „anecdote“. Personally the sort of impression I‘ve gotten is that german advocacy felt as much on the offense as on the defense.

UK advocacy feels much much more on the defense. (Not to fault people in the UK at all. I would be/am on the defence as well.)

But I guess the conditions that made having a sort of constant offence possible existed in Germany. And that offensive built a momentum which led to a sort of political and societal shift.

I wonder if something like the beds protests would work here.

We have so many questions being asked about ME/LC now in parliament. If there was a similar way to turn up the heat on those with their hands on the purse strings by increasing visibility, especially if the demand was simply fund SequenceME and guarantee safe care for severe pwME, now might be the time...

 

[NelliePledge]

There were beds used in Millions Missing we had a couple of people in Nottingham in 2019. We hadn’t heard anything from any MPs in our local Facebook group but one actually turned up on the day as he’d been contacted about it. I definitely support well organised protest as well as meeting type lobbying and I feel the situation for very severe absolutely should be the focus of any protest. Needs healthy people to do the organisation I totally underestimated the effect on my ME of being an organiser I would never take on that much again.