Petition 122600 to the German Bundestag: Healthcare, Scientific Research and Political Support for ME/CFS Sufferers!, 2021

Wow! Impressive. Amazing effort.

 

True. Though I’m much more likely to put effort signing and highlighting some petitions more than others. In this case, this was linked to something in parliament.

Sometimes I’m not convinced putting a lot of effort into a petition is worth it or might mean people don’t do something more productive. I remember people collecting outside supermarkets for a petition calling for more research. It’s not that interesting that people want more money for their particular illness; I think it would have been better to simply collect money for research.

 

Fantastic news .

 

Bravo!

I get the sense of an early, exponential rise in awareness. More people are seeing this disease in front of their eyes - harder to ignore, out of sight in darkened rooms. Pandemic, the NICE guidelines, social media — probably all contributing positively at this time.

My "R0" was 3 — I was easily able to get four signatures on that petition.

 

I am very happy about this! I got two signatures, including myself!

It's particularly impressive as many people may have been put off by having to create an account & also by the language element. I have been enjoying the signatures go up today. It would be interesting to know how it was achieved.

 

Twitter (not kidding).

 

Or in my case because I bookmarked it, intending to look up the relevant section of the SGB or whatever it was so I could know what I was signing about. But I gave up on that and have just signed. Was a bit concerned that you might have to be a German, or at least EU, national, but no, you can sign from anywhere, by the looks of things.

 

53,075 + 2 days to go + paper lists

https://epetitionen.bundestag.de/petitionen/_2021/_04/_09/Petition_122600.$$$.a.u.html

 

Thank you for signing! The English website has info about the petition, I copied the relevant passages:

Explanation: Why Did We Choose These Specific Requests?
https://signformecfs.com/?page_id=27

Spoiler: Explanation: Why Did We Choose These Specific Requests?

Our first demand to the Federal Parliament aims to improve the medical care situation for ME/CFS sufferers in Germany, which currently is devastating. Therefore we particularly ask for the inclusion of ME/CFS in the catalogue of § 116b (1) SGB V. This provision is part of German Social Security Law and regulates so-called „outpatient specialist care“ (ASV), which concerns the diagnosis and treatment of complex diseases or diseases that are difficult to treat. ASV allows for additional ways of providing healthcare services for the diseases mentioned in the catalogue of § 116b SGB V. This should lead to improved cooperation, qualification and equipment of all involved healthcare providers.

Our second demand regards investments in biomedical research on ME/CFS. At the end of 2020 the German Bundestag made dedicated funds available for ME/CFS for the first time, which was the result of efforts made by a small number of MPs. This was a very important first step, as these funds serve to set up patient registers and biobanks – thus creating the prerequisite for high-quality and promising research. To ensure that this kind of research gets underway quickly on the scale required, we are now asking the Bundestag to make provision for funding of disease-specific scientific research into ME/CFS. In our opinion, the scope of this funding must particularly take into account the large disease burden and the general neglect of ME/CFS during the past decades.

Finally, as we are aware that even an implementation of the two aforementioned points would not lead to the solution of all problems in the field of ME/CFS, we also ask the German Bundestag to create a permanent contact with ME/CFS sufferers and patient organisations, for example by appointing a designated parliamentary representative or by establishing an inter-factional working group. In particular, we hope that this will provide lasting political support so that further political measures can hopefully completely eliminate neglect and stigmatisation of ME/CFS in the future. Despite the different working approaches of the two parliaments, the „All-Party Parliamentary Group on Myalgic Encephalomyelitis“ (APPG on ME) in the British House of Commons could serve as a model for the future commitment of the German Bundestag.

After all, some may wonder why we do not also, or instead of aforementioned points, call for the general „recognition“ of ME/CFS. Of course, definitive and full recognition of existence and severity of ME/CFS in medicine, politics and society is an extremely important concern for us – as it probably is for all those affected as well as for their relatives and supporters. However, this would be a request upon which the German Bundestag, as the federal parliament, could not decide directly. In political terms, such recognition would be expressed anyway by implementing our aforementioned proposals. In all other respects, though, the German Bundestag can only work towards this goal through different parliamentary acts, but cannot establish it conclusively through legislation.

Who is eligible to sign the petition?
https://signformecfs.com/?page_id=126

Spoiler: Who is eligible to sign the petition?

An important question is, of course, who may actually participate in our petition by German law. The good news in one sentence: Almost all people worldwide are eligible to sign the petition!

In particular, German citizenship or residence in Germany is not a prerequisite for signing our petition. This means that ME/CFS sufferers and their supporters from all over the world can help us persuading German federal politics to make a greater contribution in the field of ME/CFS in the future.

Furthermore, no legal age is required for signing the petition. This means that minors can also support the petition, as long as they are able to understand the content and meaning of our demands.

However, it goes without saying that the petition can only be signed once by each person, i.e. either online or by ordinary mail/telefax.

 

Now 54,222

 

The petition ended after 28 days with 57,766 signatures online.

The signatures on paper lists will be added, they're still being counted by the Bundestag.

Thank you to everyone who signed and thank you to Science for ME for sharing the petition on social media.

 

In addition to 57,766 signatures online, 35,267 signatures were collected on lists.

The final result is 93,033 signatures collected in 28 days.

https://epetitionen.bundestag.de/petitionen/_2021/_04/_09/Petition_122600.$$$.a.u.html

 

Press release by the team of SIGN for ME/CFS in English:
https://www.signformecfs.com/downloads/signformecfs-presseinformation-2021-11-16-EN.pdf

https://twitter.com/user/status/1461358850049658883

 

Oh my goodness @Joh ! What a great achievement for all involved.

 

The hearing on the #SIGNforMECFS petition will take place on Monday 14 February at 12 noon (German time) in the Bundestag.

The session will be broadcast live on the internet at www.bundestag.de. From 15 February it will be available in the media library at www.bundestag.de/mediathek.

More votes have been counted and there are now over 97,000 votes that have been collected in 28 days.