ME/CFS advocacy successes in Germany

There have been quite a lot of improvements in the ME/CFS situation in Germany. There are now investment in research, the IQWiG report, political discussions on ME/CFS etc. I realise these are all still inadequate and that the situation for ME/CFS patients in Germany remains dire.

But the pace of change in Germany is quite remarkable. When I joined this forum around 5 years ago, it felt like a wasteland where ME/CFS was not recognized at all and psychosomatics ruled. I was even surprised to find quite a few forum members on S4ME were from Germany because I had not seen any German ME/CFS news or advocacy online.

So my question is what explains the improvement in Germany compared to other countries (i.e. France, Italy, Spain)? Perhaps there are things we can learn from it to make our advocacy more successful.

I personally suspect that the role of Carmen Scheibenbogen cannot be underestimated. Other countries often lack a respected physician/researcher who diagnoses patients and helps to raise awareness of the illness.

I am far from knowledgable on everything what has been done in Germany so would be interested in hearing other views and perspectives on this.

 

I don't know enough about the situation in Germany either but I agree with your assumption very much that respected doctors standing up for the disease probably play a role in this.

The situation seems to be similar in Austria. Their ME/CFS patient org was only founded in 2017 and look how far they got in a couple of years. All parliamentary parties seem to support them now, you can see politicians wearing ME/CFS T-shirts on certain occasions, including one of their previous healthcare ministers, several Austrian bridges are lit up in blue every year on ME/CFS day, there was an ME/CFS symposium at the Medical University of Vienna if my memory serves me right etc.

I think part of this is probably due to Michael Stingl, the neurologist specializing in ME doing a lot of campaigning in Austrian media to spread awareness and probably Germany's and Scheibenbogen's influence also contributed to this due to the easy accessibility of the information in German.

I suspect maybe the failure in the Czech Republic might have been due to the lack of such backing from prominent doctors at least in part and this is my fear for the Hungarian situation too: there is literally no one interested in this here (by interested I mean interested enough to actually stand up and spread awareness or do research or something, make the whole thing more visible).

So I agree that such things probably do matter.

 

Seeing the situation from France, I would say that the two major contributing factors to the success of ME/CFS advocacy in Germany have been garnering political support and media outreach. Some patients seem to have some connections in politics and in the media and they have been using them well. For instance, Martin Hippe (@pausedME) used to work as a lawyer for celebrities and Daniel Loy (@loy_daniel_de) as a jurist.

None of us in France are in such a position, hence we fail to spread awareness with the general public and to gain political / legal recognition even though we try our best to contact journalists and sometimes politicians. We have no leverage.

The fact that Prof Scheibenbogen is based at the prestigious Charité hospital helps too, but I don’t think this is as important of a factor.

 

I think German advocacy succeeded because they were able to reach people in parliament with successful protests, after a very successful petition that had the support from wider society and not just patients and family.

A few engaged German doctors is maybe also what made all it possible.

 

I don't have much energy, but here is a quick overview of what's been happening in Germany:


Protests:

The groundwork for the regained interest was laid in 2016 with the MillionsMissing protests. Over the years, these protests gained traction, peaking in 2019 with extensive media coverage. Interest in the movement was initially low, but media attention brought the protests to the attention of politicians. MillionsMissing Germany was successful in enlisting their first political ally. In conjunction with the German Association for ME/CFS and a cooperative politician, the first parliamentary expert discussion took place in the Bundestag in 2020. During the pandemic on May 12th, MillionsMissing orchestrated a series of postcard protests that reached a broad audience of politicians. A petition garnering nearly 100,000 signatures also made a significant impact.


ME/CFS Organizations – Task Sharing and Close Cooperation:

A degree of task sharing is evident, especially in the close cooperation between MillionsMissing Germany (MMD) and the German Association for ME/CFS (DGMECFS). MMD undertook protest activities and widespread publicity, while DGMECFS positioned itself more as a medical society, emphasizing research-based communication. This professional approach built trust with journalists and politicians, facilitating background discussions. Later in the pandemic, DGMECFS collaborated with Long COVID Germany (LCD) to develop an action plan offering concrete suggestions for improved care and research.


Planning Ahead, Acting Fast:

Evelyn's Petition served as another critical stepping stone (send her our thanks). When the EU Parliament passed the resolution, the organizations responded quickly, publishing open letters to the Ministries of Health and Science, calling for a roundtable discussion and increased research. The Ministry of Science issued a call for tenders specifically designed for ME/CFS, which resulted in a research project receiving a grant of 2.1 million Euros.

When the German government changed, DGMECFS and LCD approached politicians with a prepared document containing numerous suggestions for improving care and research that could be implemented in the coalition agreement. The establishment of competence centers for ME/CFS and Long COVID was included, but we are still awaiting the execution of these plans.

Subsequently, both organizations developed the aforementioned action plan to establish a rode-map. One aspect was chosen and presented to many members of the budget committee. The organizations, alongside Professors Scheibenbogen and Behrends, spoke with numerous politicians. As a result, a financial contribution of 10 million Euros was granted for research.


Professors Scheibenbogen and Behrends:

As previously mentioned in this thread, both professors play a significant role. They are committed to assisting people with ME/CFS. They engage with a host of politicians, attend every hearing to which they're invited, and collaborate closely with ME/CFS organizations. They are affiliated with prestigious universities, especially Professor Scheibenbogen who works at Charité, the most esteemed medical university in Germany.


Active Twitter Community:

The German ME/CFS community is highly active on Twitter, making it highly visible to politicians and journalists. This is crucial work. However, there seems to be an availability bias at play. The behind-the-scenes work of organizations, involving substantial interaction with politicians, tends to be undervalued, while the loud, public communication on Twitter is somewhat overvalued when considering the significant milestones achieved in the past.


Active Local Groups on State Level:

On the state level, there are a few remarkably active groups pushing for better care and more research. This has an kickback effect to the national level.

 

Yes. There is Prof. Henningsen, the German arm of Wessely et al., being active in press and in psychosomatic societies. He was involved (author) in the additional chapter of the new ME/CFS guideline questioning the whole ME/CFS chapter. He was also involved in the IQWiG process sending in a statement for two societies and was part of the hearing.

He is supposed to be an expert in somatization disorder.

He was very active on ME/CFS a few years ago and was reactivated when long COVID arose.