News from Germany

I'm not really into politics- is there reason to hope for an Improvement of the situation for PwME here in germany from the new coalition? The former health minister jens spahn never acknowledged our existence, so it can only get better I presume.
 
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I'm such a slow writer that I crossposted with @Michiel Tack (thanks for supporting the petition!), but but I guess it can't hurt to draw attention to it several times. :)






Please sign ME petition to the German government

Today a petition to the German Bundestag went online.

Anyone from any country at any age can sign. The German ME community is quite small, as ME is still very unknown here and we would be very happy about international support.

The goal is to reach 50,000 signatures within one month (until November 9). This number in the short timeframe is needed to be invited to talk about the petition in person at the German Bundestag.

Four pwME have started the petition and designed an excellent accompanying website. The website is available in German and English.

You can sign the petition online or on paper. Thanks! :)

Website (English version): https://signformecfs.com
 
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Joh said:
I'm such a slow writer that I crossposted with @Michiel Tack (thanks for supporting the petition!), but but I guess it can't hurt to draw attention to it several times. :)






Please sign ME petition to the German government

Today a petition to the German Bundestag went online.

Anyone from any country at any age can sign. The German ME community is quite small, as ME is still very unknown here and we would be very happy about international support.

The goal is to reach 50,000 signatures within one month (until November 9). This number in the short timeframe is needed to be invited to talk about the petition in person at the German Bundestag.

Four pwME have started the petition and designed an excellent accompanying website. The website is available in German and English.

You can sign the petition online or on paper. Thanks! :)

Website (English version): https://signformecfs.com
Click to expand...

The instructions for non-German speakers are excellent, very clear.

The process of registering and signing is a bit cumbersome but it's doable with a bit of patience. I kept 2 windows open side by side so I had the instructions visible right beside the form to fill in and just took it step by step.

I hope the hassle involved, minor as it is, isn't going to put people off. There were only 600-odd signatures when I signed. Long way to go to 50,000.
 
Nuremberg: Mother (39) has chronic fatigue syndrome
Chronic fatigue syndrome affects the whole body, explains Juliane. Times are pains in the foreground, sometimes the digestion, times sleep disorders. the exhaustion is unfortunately always there and the worst for her. Every little activity in everyday life, such as showering or preparing food, exhausts her so much that she has to lie down again afterwards. She can walk for ten minutes, but this increases her pulse significantly. A wheelchair is her regular companion for this reason. Another phenomenon is that she feels particularly bad after an overload – for example after a half-hour walk. “Then I really lie completely flat for a whole week.”
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She can no longer work either. She used to be HR Administrator at a large company. A job that fulfilled her. The chronic fatigue syndrome broke out during her parental leave. “It took me a few months to get it mentally I coped with the fact that I had to give up my great job. “Fortunately, she is financially secure thanks to her full-time husband. Finding a job that she could do from home is a challenge for her. Because she cannot foresee, which days of the week she has enough energy flexibility can hardly be taken into account by an employer.
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https://news.in-24.com/health/247409.html

(features a photo of her in her wheelchair)
 
Anna Dietzke, Tagesspiegel 10.11.2021

Marina Weisband lives with chronic fatigue syndrome: "The most common cause of death from the disease is suicide"

34-year-old Marina Weisband is a psychologist and participation educator, book author and mother. But above all, she is also a sufferer. She suffers from ME/CFS.

https://plus.tagesspiegel.de/politi...sursache-der-krankheit-ist-suizid-299551.html

Paywalled / deepl translate of the first paragraphs:

Ten years ago, Marina Weisband was the political director of the Pirate Party in Germany. Today, she is involved with the Green Party in the areas of digitization and education. In an interview, she talks about dealing with her illness and why digitization is such an important step for participation.

Ms. Weisband, you announced in October that you suffer from ME/CFS. How long have you had the disease?

I've been worse since summer 2020, so it's been quite a long time. But the diagnosis is dragging on. Investigations are still going on, but the CFS Center is talking about a pretty classic case.

Is there a trigger that you know of?

No, it's mysterious in my case. I was found to have Epstein-Barr virus, though, but I didn't have symptomatic disease. I've always had a weak immune system and tend to be sick a lot anyway, and possibly that was the trigger.

As a woman in the public eye, you are seen traveling, making television appearances and attending events. How do you manage that?

...by lying in bed during all the time when I'm not seen. With the mild variant that I have, you can't see the illness on my face. But all this costs me strength. I can appear in public, but have trouble showering. When I go somewhere, I am in bed for a week afterwards.

Do you have support?

I have a huge support network right now of an assistant, my husband, a babysitter. I have spread this over as many shoulders as possible and have regulated my daily routine very precisely. I now plan very meticulously. Every trip has a huge lead time and I usually travel with a wheelchair. All the walking and standing has become too much for me.

Can you take any preventive measures? Take three days off before a trip, for example?

Unfortunately, that doesn't work! You can't save up any energy. I try to keep the following week free. But something like sleeping in advance doesn't work.

How much of a burden does ME/CFS put on your mental state?

Extremely. I think that is the most extreme stress I experience from the disease. Not being able to live up to my own expectations. I have very high demands on myself, both in terms of self-actualization and my family, friends, all the areas I'm involved in. Basically, the whole duration of my illness has been one of letting people down. I'm learning a lot of self-forgiveness and self-love right now. I think the most important thing is actually to come to terms psychologically with the fact that you suddenly have such narrow limits.

...to say to yourself: it's okay that this and that doesn't work right now?

Yes, that you show respect and kindness to yourself, just as you would show respect to others.

How do you still manage not to resign and have hope?

ME/CFS, they say, has a higher level of suffering than cancer or multiple sclerosis. And in fact, the most common cause of death from the disease is suicide. It's very hard not to get help as a patient, even though medical support would be so important.

So how do you get help at all?

Fortunately, patients have come together. There are support groups, online resources, but it's all patient-driven. These are people who don't have energy in and of themselves, and they have to get this going on the side. That's why we need public awareness. We need help!

What kind of help does it take, exactly?

Several things are important. The first is actually investment in research, we've needed that desperately for years. But the second is also public awareness. For me, for example, it is very difficult to obtain a severely disabled status and to get the aids that go with it, because the pension offices are also hardly aware of the disease. I had to pay my doctor for all the laboratory tests out of my own pocket. We need a reform! We can't burden the patients with this.
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Trish said:
Thread on the petition here:
Petition 122600 to the German Bundestag: Healthcare, Scientific Research and Political Support for ME/CFS Sufferers!, 2021
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Marina Weisband is one of the public persons who repeatedly shared the petition on Twitter.
 
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lycaena said:
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The German Association for ME/CFS and Long COVID Germany cooperated to get ME/CFS and Long COVID into the coalition agreement of the new German government. They talked to the different parties and developed a position statement with concrete measures.

ME/CFS is now officially for the first time part of the coalition agreement. The government writes: "We are creating a nationwide network of competence centers and interdisciplinary outpatient clinics to further research and ensure care for the long-term consequences of Covid19 and for chronic fatigue syndrome (ME/CFS)"

- Article by the Germam Association for ME/CFS: https://www.mecfs.de/koalitionsvertrag
- Automatic English translation: https://www-mecfs-de.translate.goog...r_sl=de&_x_tr_tl=en&_x_tr_hl=de&_x_tr_pto=nui

Of course, there is still a huge amount of work to be done to get everything going in the right direction (and I know that "multidisplinary" can go wrong), but it is a very important first step. We do not have centers or outpatient clinics, so far pwME have basically nothing. (At the Charité, only patients from Berlin and Brandenburg can get a one-time appointment for diagnosis.) And Germany had 0 euro research funding until 2021 and a tiny amount for the first time this year.
 
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This looks very promising. Also, once you have a service like this in one country then it becomes more difficult for other countries to make no/lesser service provision ---- well done to Germany.

EDIT-
@Jonathan Edwards has highlighted that [EDIT-typos] his way, into making progress in autoimmune rheumatoid arthritis, was a funded arthritis service which facilitated the development of effective treatments. It will be interesting to see what the service in Germany is like --- but it is a way to make progress.
 
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“A historic success for the sick”
It is only a small section in the new coalition agreement, but with the greatest effect for almost 250,000 sick people in Germany. A sentence that gives hope: “To further research and ensure needs-based care for the long-term consequences of Covid19 and for chronic fatigue syndrome (ME / CFS), we are creating a Germany-wide network of competence centers and interdisciplinary outpatient clinics.”
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ME / CFS also as a consequence of Corona
Carmen Scheibenbogen heads the Fatigue Center at the Berlin Charité and has been treating people with ME / CFS for many years. “It is a complex neurological disease that is often triggered by an infection,” explains the doctor.

In two thirds of patients, the Epstein-Barr virus, Pfeiffer’s glandular fever, flu or gastrointestinal infection are the triggers of the disease. But “even as a result of Covid-19, younger people in particular get ME / CFS,” said Scheibenbogen.

In other patients, an injury to the cervical spine or severe psychological stress could also be the beginning of the disease. Characteristic of ME / CFS is the deterioration on the next day after a slight exertion, the so-called post-exertional malaise (PEM).

ME / CFS and Long Covid in the coalition agreement
“The fact that ME / CFS and Long Covid are explicitly discussed in the coalition agreement is a historic success for those with the disease,” said Daniel Hattesohl, chairman of the German Society for ME / CFS, last week. Carmen Scheibenbogen told Tagesspiegel that there was finally hope “that the hitherto completely inadequate supply structure for patients will be improved”.
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https://globalhappenings.com/politics/53208.html
 
Hey, let's not sell the chickens before they hatch. None of the prior eggs have hatched, it's kind of a trend.

Looking forward for the very first but this whole celebrating before anything's been done is an especially annoying trope because nothing ever gets done in large part because of that fake celebratory nonsense people point at to say: "see, things are changing!".
 
In two thirds of patients, the Epstein-Barr virus, Pfeiffer’s glandular fever, flu or gastrointestinal infection are the triggers of the disease. But “even as a result of Covid-19, younger people in particular get ME / CFS,” said Scheibenbogen.

In other patients, an injury to the cervical spine or severe psychological stress could also be the beginning of the disease.
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Is there any evidence for any of this?
 
OK this is very interesting, the new German minister of health has been quite vocal for a while about ME and generally in a good way. Recognizes the massive overlap with Long Covid and how dire things are. This could be a major change.

IIRC he shared the petition that was sent a few weeks ago to the Bundestag (German parliament) and was supportive of its aims. So now he'd be in charge of some of the government's response. But governments work with collegiality, so no guarantee there won't be pushback.

 
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